It is a question that has always seemed simple on the surface. It is the kind of question people ask when they want to know what you are working toward, what goals you have, and what kind of future you imagine for yourself. It is often associated with ambition and success, with creating a plan and having a clear direction for where you want your life to go.

For a long time, I loved this question. I could easily imagine my future. I could picture the person I wanted to become and the things I wanted to accomplish. I had goals that excited me, dreams that felt possible, and a sense that my life was moving in a direction I understood.

I was always thinking ahead, always imagining what was next, and always believing something was waiting for me in the future if I worked hard enough to reach it.

I did not believe life would be perfect. I knew there would be obstacles. I knew things would not always happen exactly the way I wanted them to. But I believed there was a path. I believed that even when things got difficult, I would eventually find my way back toward the future I had imagined. I think many people experience this before life forces them to question it.

We move through the world assuming that tomorrow will look somewhat like today. We make decisions based on the belief that a future version of ourselves will get to experience the results of those choices. We plan careers, relationships, goals, and dreams because we believe we’ll have time to accomplish them.

Then something happens that changes everything.

For me, that was chronic illness.

It did not just change my health. It changed the way I understood time, plans, and the future itself. When you live through something that completely alters your life, you begin to realize how fragile the things you thought were guaranteed actually are. The future you spent years imagining can disappear in a moment. The person you thought you were becoming can suddenly feel like someone you no longer recognize.

And I think that is one of the hardest parts of chronic illness that people do not always see. It is not only about losing abilities or dealing with symptoms. It is not only about appointments, treatments, procedures, and everything that comes with managing a body that no longer works the way you expected it to.

It is also about losing certainty.

It is about realizing that the future you spent so much time building in your mind might not happen in the way you thought it would.

There is a unique kind of grief that comes with losing something you never actually had. You grieve a future that only existed in your imagination, but felt so real that losing it still hurts. It is grieving the person you thought you would become. It is grieving the goals that suddenly need rewriting. It is grieving the timeline you thought you were following.

Before chronic illness, I could dream without hesitation. I could make plans without thinking about whether my body would allow them to happen. I could imagine years ahead without considering all the ways my life might need to change.

Now, I think about the future differently. Not because I no longer have dreams. Not because I have stopped wanting things. Not because I believe nothing good can happen. It is because I have learned something I never expected to learn at this point in my life: life can change in an instant.

A diagnosis can change everything. An accident can change everything. One unexpected moment can completely redirect the path you thought you were on. And when that happens, you are left rebuilding.

You are left trying to create a new life from pieces of the old one. You are left figuring out what still matters, what still feels possible, and who you are when the future you planned for is no longer the future you are living.

I think before chronic illness, I viewed rebuilding as something that happened once. I thought life had challenges, you overcame them, and then you moved forward. But sometimes rebuilding is not a one-time thing. Sometimes it becomes a part of your life.

Sometimes you have to rebuild your expectations. You have to rebuild your routines. You have to rebuild your identity. You have to rebuild the way you measure success.

And that process can be exhausting.

People often talk about resilience as if it is this beautiful, inspiring thing. As if being forced to adapt automatically makes you grateful for the experience that caused it. But resilience is complicated. Sometimes resilience is not feeling strong. Sometimes resilience is simply continuing when you are tired. Sometimes resilience is accepting that something unfair happened without forcing yourself to find a reason why. Sometimes resilience means admitting that you would never have chosen this life while still finding ways to make it meaningful.

For a long time, I thought accepting uncertainty meant giving up. I thought if I stopped making detailed plans or stopped imagining exactly where I would be years from now, it meant I was losing hope.

But I have realized that uncertainty and hopelessness are not the same thing.

You can have hope while acknowledging that life is unpredictable. You can have dreams while understanding they might look different from what you originally imagined. You can build a future while knowing that future might change.

In some ways, chronic illness has taken away my ability to assume things will work out exactly as planned. But it has also given me a different perspective.

I no longer believe a perfect plan is what creates a meaningful life. I no longer think success is only measured by how closely you follow the path you originally imagined.

Because the truth is, none of us truly know what is coming.

Some people are fortunate enough to go many years without being reminded of that. Some people have their lives interrupted earlier than they expected. Chronic illness just forced me to understand something that everyone eventually has to learn.

Nothing is guaranteed.

Not our health. Not our timelines. Not the person we think we will become.

And while that realization can be terrifying, it can also be freeing. If life does not always unfold according to the plans we make, maybe we do not need to spend our entire lives trying to control what happens next.

Let’s focus more on building a life that can adapt. A life that has room for change. A life where setbacks do not erase everything we have created. A life where starting over does not mean starting from nothing.

Because I have learned that rebuilding is not the same as losing everything.

Every version of myself has carried something forward. Every challenge has changed me, but it has not erased me.

I am not the person I thought I would be five years ago. But maybe that does not mean I failed to become her. Maybe it means I became someone else. Someone I never expected to meet. Someone who understands things I never wanted to understand. Someone who knows that life can change without warning and still believes there is something worth building.

So where do I see myself in five years?

I do not know.

And maybe that is the most honest answer I have ever been able to give.

Five years ago, I could not have imagined this life. I could not have predicted the challenges I would face, the things I would lose, or the person I would become because of them. Maybe five years from now, I will look back and realize the same thing. Maybe the future was never about knowing exactly where I would end up. Maybe it was always about trusting that wherever I end up, I will find a way to keep going.

Because I have learned that life is not about creating a future where nothing ever changes; it is about creating a life where, when everything changes, you know how to begin again.

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There are medical rooms I will probably never step into again. Not because I have forgotten them, but because I remember them too well. They blur together now: examination tables covered in thin paper, fluorescent lights that make everything feel too bright, computers sitting between me and the person who is supposed to be listening, doors that close with a quiet click, and the familiar question of what brings you in today when the answer is so complicated you don’t even know where to begin. I remember sitting there trying to explain what was happening inside my own body and slowly realizing that the person across from me had already decided what my experience meant before I had finished speaking.

I remember trying to find the right words. That is something nobody really prepares you for when you become sick. You can know your body better than anyone else and still find yourself sitting in a room trying to translate it into a language that another person will accept. You learn quickly that pain is not always enough. You need to describe it, locate it, quantify it, explain when it started, what makes it worse, what makes it better, whether it moves, whether it burns, whether it aches, whether it is constant or comes and goes. You learn to turn your body into a timeline because you know that simply saying, “Something is wrong,” may not be enough.

Sometimes, even when you do everything right, it still isn’t enough. I know what it feels like to leave a medical appointment wondering if I somehow failed. Maybe I explained it badly. I focused on the wrong symptom. Maybe I sounded too emotional. Maybe I didn’t sound emotional enough. Maybe I should have brought more documentation, asked a different question, been more specific, stopped talking sooner, or not cried. Maybe if I had just been calmer, more articulate, more convincing, more agreeable, more anything, the person sitting across from me would have understood.

That is what dismissal can do to you. It doesn’t always convince you that the other person is right. Sometimes it simply makes you unsure that you are allowed to believe yourself. That uncertainty can follow you long after the appointment ends. It follows you home and sits beside you when you’re trying to sleep, making you wonder whether that symptom is actually getting worse or whether you’re just paying too much attention to it. It comes with you to the next appointment when you rehearse what you’re going to say in your head.

You start collecting evidence for your own body: dates, symptoms, test results, medication lists, previous diagnoses, previous treatments, questions. You document your own suffering because somewhere along the way, you learned that experiencing it wasn’t always enough. You had to prove it. There is something deeply damaging about having to convince another person that you are hurting when you are already spending all of your energy trying to live with the hurt itself. People often think dismissal ends when the appointment does, but sometimes that is when it really begins. You leave the room, but you take the doubt with you.

I don’t think people understand how much that can change the way you enter a room. Eventually, you stop walking into medical appointments assuming that you will be believed. You walk in prepared for the possibility that you won’t. You watch the person’s face when you speak. You notice whether they look at you or at the computer, whether they interrupt, whether their tone changes when you mention your previous diagnoses, the number of doctors you’ve already seen, or the treatments that haven’t worked. You notice everything, not because you want to, but because you have learned that being misunderstood can have consequences.

There is a particular kind of fear that comes from knowing you may need medical care while also knowing that medical spaces have hurt you before. You need the room. You need the person sitting across from you. You need someone to help you. And yet some part of you is still preparing to protect yourself. That is what medical trauma has meant to me. It is not simply remembering a bad appointment or being angry about something a doctor said years ago. It is carrying the emotional memory of those experiences into the appointments that follow: feeling your body tense before someone even touches you, becoming hyperaware of every word, and wondering whether crying will make you seem unreliable, whether being angry will make you seem difficult, or whether being too calm will make them think it isn’t serious.

I wish I could say that once you understand this is happening, you can stop caring. You can’t. At least I can’t. Knowing that I have been dismissed does not magically undo what being dismissed did to me. Knowing that someone was wrong does not erase the part of me that still wonders whether they were right. Sometimes the people who dismissed me are no longer in the room, but I am still carrying their voices. Sometimes I question myself before anyone else gets the chance. Sometimes I minimize something because I don’t want to be perceived as dramatic. Sometimes I hesitate before saying that something hurts because I already know what it feels like to have pain treated as an inconvenience. Sometimes I leave an appointment and replay everything I said, wondering if I said too much or not enough.

That is what makes medical trauma so complicated. It doesn’t always look like fear. Sometimes it looks like self-doubt. Sometimes it looks like avoidance, over-preparing, apologizing for taking up time, or saying, “I’m sorry,” when you have done absolutely nothing wrong. Sometimes it looks like sitting in a parking lot after an appointment and crying because you held yourself together until you were finally somewhere no one could see you. Sometimes it looks like being relieved when a doctor believes you and then feeling ashamed that being believed feels like such a remarkable event.

It shouldn’t. Being believed should not feel like winning. Listening should not feel like a privilege. Respect should not feel like exceptional care. And yet, when you have spent enough time being dismissed, basic human decency can start to feel extraordinary.

There were rooms where I was brought to tears, rooms where I felt silenced, rooms where I left with more questions than answers, rooms where I was made to feel like my pain was an inconvenience, and rooms where I was told things that made me question my own understanding of what was happening to me. There were rooms where I walked out wondering whether I had imagined the severity of what I was experiencing. There were also rooms where I believed people who told me I was fine, even when my body was telling me otherwise, because they were supposed to know. That is one of the hardest things to untangle. You are taught to trust medical professionals, and you should be able to. You should be able to walk into a room, tell the truth about what is happening to you, and expect that the person sitting across from you will take that truth seriously.

Instead, many of us learn to advocate for ourselves because we have to. We become fluent in our own medical histories. We learn terminology we never expected to know, how to read reports, which questions to ask, how to request records, when to push back, and when “no” does not necessarily mean the end of the conversation. People will call that strength, and sometimes it is. But sometimes it is simply what happens when you have been left with no other choice. I don’t always want to be strong. I don’t always want to have to advocate. I don’t always want to know what questions to ask. I don’t want to have to walk into another appointment wondering how much of myself I will have to defend before someone starts helping me.

I want to be a patient. I want to be able to say, “Something is wrong,” and have that be enough to start a conversation. I want to be able to cry without wondering whether my tears will be used to explain away my symptoms. I want to be able to say that I am scared without having my fear become evidence against me. I want to be taken seriously without having to know the medical terminology. I want to be allowed to be a person before I am a case.

Maybe that is what those rooms took from me. Not my voice exactly. I still have that. But the ease with which I used to use it. The assumption that if I spoke honestly, someone would listen. The belief that asking for help would lead to help. The trust that the person in the room with me was automatically on my side. Those things have been harder to rebuild than I expected, because healing from medical trauma isn’t as simple as deciding that the past is over. You can know that an experience happened years ago and still feel it when you walk into a new appointment. You can have a good doctor and still brace yourself for the bad one. You can be listened to today and still remember what it felt like not to be listened to yesterday. The body remembers things the mind would sometimes rather forget.

Maybe that’s why the prompt stayed with me. Write about a room you’ll probably never step into again. I thought about the rooms themselves at first, but then I started thinking about the person who sat inside them. There are versions of me I can remember so clearly that it almost feels like I could reach back through time and find them there. The girl who still believed that if she explained herself clearly enough, someone would understand. The person who kept answering questions, waiting for answers, trying again after the last appointment had gone badly because what other choice did she have?

I wish I could go back and tell her that she did not fail. Not when she cried. Not when she struggled to find the right words. Not when she trusted someone who turned out to be wrong. Not when she walked out of a room wondering if she had somehow misunderstood her own body. She was not difficult because she kept asking questions. She was not dramatic because she was scared. She was not weak because she needed someone to help. She was sick, she was hurting, and she was trying to make sense of something that had already changed her life.

There is a particular grief in knowing you cannot go back and give yourself what you needed then. I cannot walk into those rooms as the person I am now and change what was said. I cannot stop certain moments from happening. I cannot give my younger self the knowledge I have gained through years of living inside a healthcare system that taught me things I never wanted to learn. I can only look back at her differently now.

For a long time, I thought surviving those experiences meant becoming harder. I believed I needed to know more, prepare more, ask more questions, and trust less. I thought strength meant making sure nobody could ever make me feel powerless again. But something is exhausting about living as though every room is a fight waiting to happen. You can become so focused on protecting yourself that you forget what it feels like to exist without waiting for something to go wrong. I don’t want to spend the rest of my life entering medical spaces already preparing for war.

I want there to be doctors I don’t have to convince. I want appointments where I don’t leave analyzing every word I said. I want to be able to ask a question without wondering whether it makes me look difficult. I want to be able to say that I don’t know something without feeling ashamed. I want to be able to sit across from someone and feel like we are trying to understand what is happening to me together, rather than spending the appointment trying to prove that something is wrong in the first place. I want room for trust again, even if it has to be a different kind of trust than the one I had before. Not blind trust. Not the kind that asks me to ignore my own instincts. A trust that leaves room for questions, uncertainty and disagreement without making me question whether I am allowed to know my own body.

I don’t know what healing from medical trauma looks like when medical care is not something you can simply leave behind. I can’t close the door on healthcare forever. There will be more appointments, more rooms, more people who will know things about my body that I need them to know. I will have to keep walking into those spaces. But I don’t have to walk into them as the person those worst experiences created. I can remember what happened without allowing those experiences to shape how I approach every room that comes after them. I can be cautious without deciding that everyone is unsafe. I can question something without believing that questioning makes me difficult. I can accept help without surrendering my own understanding of myself.

And maybe most importantly, I can stop asking whether those experiences were bad enough to affect me.

They were.

I don’t need to make them smaller because I survived them. I don’t need to turn them into a lesson. I don’t need to be grateful for what they taught me. There are things I learned because I had no choice, and I am allowed to wish I had never needed those lessons in the first place.

Some rooms hurt me. Some rooms frightened me. Some rooms made me question myself in ways that took years to untangle. Some rooms contained moments I wish had happened differently. But those rooms are behind me now. Not erased. Not forgiven. Not forgotten. Behind me.

And maybe that is what I misunderstood about the prompt. Maybe a room you will probably never step into again doesn’t have to be a room you physically left behind. Maybe it can be a version of yourself you can no longer return to.

I cannot be the person who walked into those rooms before any of this happened. I cannot unknow what I know now. I cannot give back the years spent learning how to navigate pain, dismissal, uncertainty and fear. But I also don’t want to spend forever trying to become her again. I can look back at the person who sat in those rooms, crying, questioning herself, trying desperately to find the right words, and understand that she was never the problem.

She deserved to be believed. She deserved to be listened to. She deserved better than what happened to her.

And I don’t need to go back into those rooms to prove any of that.

I was there. I know what happened. And I believe myself.

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Piece inspired by a journal prompt I came across from @ kritisachan on Instagram: “Write about a room you’ll probably never step into again.”

I know what it is supposed to mean. Zero means no pain, the state in which nothing hurts and your body is apparently minding its own business for once. It is the starting point of the pain scale, the nice, clean baseline against which every other number is measured. But when you live with chronic pain, zero can start to feel less like a useful reference point and more like something you are expected to understand despite having very little personal experience with it. We talk about pain level zero as though it is the most obvious thing in the world, but chronic pain has a funny way of making supposedly simple questions much more complicated.

The pain scale itself seems straightforward enough. You are asked to rate your pain from zero to ten, with zero being no pain and ten being the worst pain imaginable. You choose a number, someone writes it down, and everyone carries on with their day. It is practical, quick and easy to understand, which is probably why it has become such a common part of healthcare. The problem is that pain is not actually a particularly straightforward experience, and reducing it to a single number can leave out a ridiculous amount of information. A number can tell you something about what a person is experiencing, but it cannot possibly tell you everything about the life happening around that number.

Take a three, for example. What does a three actually mean? Is it a three compared with every type of pain you have ever experienced? Is it a three compared with yesterday? Is it a three because it is what your body has become accustomed to? Is it a three because you are currently functioning well enough that you do not want to describe it as something higher? There is no universal measuring stick inside our bodies that allows everyone to experience pain in the same way and then report it using the same numerical system. We are all essentially doing our best to translate an incredibly complicated physical experience into a number because someone asked us to.

When Pain Becomes Normal

When you live with chronic pain long enough, you stop measuring every day against the idea of feeling no pain at all. You start comparing it with what your body has come to consider normal. A three after a week of sevens can feel like an enormous relief, while a three that has become your everyday reality may barely register as a good day. The number is the same, but its meaning depends on what came before it. Sometimes better is less pain than yesterday, a little more sleep, enough energy to do something you have been missing, or a day when your body feels slightly easier to live in. Improvement does not always mean getting closer to zero. Sometimes it means noticing that today is different from the days before it.

That is part of what makes the pain scale so limited. It gives us a quick way to describe intensity, but it does not tell us what that number means to the person experiencing it. One person’s five may be a significant improvement from their usual, while another person’s five may be the level they have learned to live with.

Even a ten is subjective because “the worst pain imaginable” will mean something different to everyone. We each bring our own history to the number we choose, which is why two people can give the same answer and still be having very different experiences. The number can tell us where someone is on the scale, but understanding why they chose that number tells us much more.

Listen Beyond the Number

So, WTF is pain level zero? Technically, it is no pain. But for someone living with chronic pain, the more useful question may not always be “What number are you?” It may be “What is different today?” Has the pain changed? Is this worse than your usual? Is something new happening? What does this particular number actually mean for you?

You do not have to experience someone’s pain yourself to believe them, and you do not have to decide whether their number sounds high enough. If someone tells you they are at a three, that number does not need to fit some universal definition for their experience to be valid. Their history matters. Their baseline matters. What has changed matters.

So yes, zero means no pain. But if someone tells you they are at a three, four or seven, they are not giving you a mathematical answer. They are trying to put an experience into words using the only system they have been given. Maybe instead of asking whether the number sounds serious enough, we should ask what made them choose it in the first place.

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The person I struggle with is not myself. It is the version of me that pain creates. It is the version of me that appears when I have spent too long pushing through, too long pretending I am okay, and too long carrying something that was never meant to be carried alone. It is the version of me that becomes overwhelmed, frustrated, emotional, and exhausted. It is the version of me that I sometimes look at afterward and wonder, “Where did that come from?” because it feels so far away from the person I know myself to be. The hardest part about chronic pain is that it does not only affect your body. It changes your emotions, your relationships, your patience, and the way you see yourself. It forces you to confront a version of yourself that you never wanted to meet.

As I sit here writing this piece, with tears streaming down my face, I realize these tears are not coming from one single moment or one specific thing that happened. They are the release of everything that has slowly built up over time. They come from all the moments where I have had to be stronger than I felt, all the times I have smiled when I wanted to cry, and all the times I have said “I’m okay” because explaining the truth felt too exhausting. They come from the constant emotional weight of living in a body that has required more from me than I ever expected. Chronic pain is not only the pain you feel in the moment. It is the accumulation of every appointment, every setback, every unanswered question, every treatment, every disappointment, and every reminder that your life has changed in ways you never asked for.

Today, July 29th, 2026, marks 3,190 days of living with pain. That is 3,190 days where pain has been part of my everyday life. That is 3,190 days where I have never experienced a day completely free from pain. There has never been a morning where I woke up and forgot what it felt like to hurt. There has never been a day where my body was completely quiet. Pain has been there through the good moments, the bad moments, the milestones, the accomplishments, and the moments where I wondered how I would keep going. While I have learned how to live alongside pain, I do not think there is ever truly a point where you “get used to it.” You learn how to adapt. You learn how to function. You learn how to continue living while carrying something invisible. But adapting to something does not mean it stops being difficult.

People often say that things get easier with time, but I do not always believe that is true. Sometimes things do not become easier. Sometimes you become better at carrying something incredibly heavy. People living with chronic pain become experts at adapting because they have no other choice. We learn how to have conversations while our minds are focused on what is happening inside our bodies. We learn how to show up while exhausted. We learn how to make plans while knowing there is always a possibility our bodies will change them. We learn how to continue participating in life while constantly managing something that other people cannot see. But what people often do not understand is that constant adaptation comes at a cost.

The cost is that eventually you become tired of fighting. You become tired of constantly monitoring yourself, your symptoms, your emotions, and your reactions. You become tired of having to explain why something that seems small to someone else feels impossible to you. You become tired of trying to convince yourself that you are okay when a part of you is struggling. And because so many people with chronic pain become experts at hiding how much they are struggling, the people around them often only see the moments where everything finally comes out.

They see the frustration, but they do not see everything that caused it. They see the anger, but they do not see the exhaustion underneath it. They see the moment where your patience runs out, but they do not see all the moments before that where you fought to keep yourself together. They see the reaction, but they do not always see the pain that created it.

And that is one of the most painful parts.

When I am in extreme pain, I am not always the person I want to be. I become more emotional. I become frustrated more easily. My patience becomes smaller. I can become short with the people around me, even when they have done absolutely nothing wrong. The hardest part is knowing that most of the time, my reaction is not actually about the person in front of me. It is not because they failed me. It is not because I do not appreciate them. It is not because I do not love them.

It is because I am hurting.

It is because I am tired.

It is because there is a level of exhaustion that comes from waking up every day knowing your body is fighting against you.

But understanding that does not make the guilt disappear. In many ways, the guilt becomes another layer of pain. After those moments, I often replay everything in my head. I think about what I said, how I reacted, and whether I hurt someone who did not deserve it. I feel guilty because I know the people around me are not responsible for my pain, yet sometimes they experience the impact of it. I feel guilty because I know there is a kinder, calmer version of myself underneath all of this. I feel guilty because I never want the people I love to feel like they are fighting against me when the truth is that I am fighting against something inside myself.

That is the complicated reality of chronic pain. You can understand why something happens and still feel hurt by it. You can recognize that your pain affects your behaviour while also feeling devastated by the fact that it does. Both things can exist at the same time. I can take accountability for moments where I did not respond the way I wanted to while also acknowledging that I am navigating something incredibly difficult. I can apologize without deciding that I am a bad person. I can forgive myself while still wanting to do better.

Because the truth is, I do not hate myself.

I hate what pain takes from me.

I hate that pain can make me feel disconnected from the person I know I am. I hate that something outside my control can influence my emotions, my reactions, and how I show up in the world. I hate that there are moments where I feel like I have to apologize for something that I never asked for. I hate that chronic pain does not just challenge your body; it challenges your identity. It makes you question yourself. It makes you wonder if the person you are becoming is the person you truly are.

But I am learning that pain is not my personality. Pain is not my character. Pain is not a reflection of my heart or the kind of person I am. The person I become in my hardest moments is not the entirety of who I am. It is a person who is overwhelmed. It is a person who is exhausted. It is a person who has been carrying something incredibly difficult for a very long time.

Maybe one of the hardest parts of chronic pain is learning how to forgive yourself for the ways you survive it, learning that your worst moments are not proof that you are a bad person, learning that needing compassion does not mean you are avoiding responsibility, learning that you can be frustrated with yourself without turning that frustration into hatred.

Because I do not hate who I am.

I hate who pain sometimes forces me to become.

And underneath all of that, I am still here. I am still the same person underneath the pain. I am still trying. I am still learning. I am still showing up in a body that has asked more of me than it ever should have.

I am not my anger. I am not my frustration. I am not the moments where I finally break after holding everything together for too long.

I am a person living through something incredibly difficult.

And that does not make me a bad person.

It makes me human.

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I think about the version of me who got sick more often than I probably admit. Not the version of me before everything changed, but the exact moment when life became something different. The person who had no idea that their world was about to become divided into a before and an after. The person who was still making plans, still believing that their body would always work the way they needed it to, still assuming that if something went wrong, it would eventually get better.

You had no idea what was coming. You didn’t know that hospitals would become familiar places, that medical appointments would start filling your calendar, or that words like chronic pain, disability, and treatment would become part of your everyday vocabulary. You didn’t know how much energy would go into explaining something that other people could not see. You didn’t know that one of the hardest parts of being sick would not always be the pain itself, but constantly having to prove that the pain was real.

If I could go back to that version of you, I don’t think I would tell you everything that was ahead. I don’t think I would give you a warning or a timeline of every difficult moment you would experience. The truth is, some things are too heavy to carry all at once. Instead, I would sit beside you and remind you that it is okay to be scared. It is okay not to understand what is happening. It is okay to grieve the life you thought you were going to have.

Because that is something nobody really prepares you for when you become chronically ill; you do not only lose health. You lose expectations. You lose the certainty that tomorrow will look like today. You lose the ability to assume your body will cooperate. You lose the version of yourself who could make plans without thinking about consequences, who could say yes without wondering what it would cost later.

There is a very specific kind of grief that comes from losing a future you never got to experience. You mourn the person you thought you would become. You wonder what your life would look like if your body had not changed. You wonder who you would be if you did not have to spend so much time advocating, recovering, explaining, and adapting. You wonder about the opportunities you missed and the experiences you never had.

And I want you to know that you are allowed to feel that grief.

For a long time, you thought that acknowledging what you lost meant you were not grateful enough. You felt like because you were still here, because you had survived, and because you had found ways to keep moving forward, you were not allowed to admit how much this hurt. There was an unspoken expectation that if you were going to talk about your illness, you needed to talk about it in a way that made other people comfortable. You needed to focus on the strength it created, the lessons you learned, or the person you became because of it.

But sometimes you did not want to talk about the lessons. Sometimes you did not want to find the silver lining. Sometimes you just wanted someone to acknowledge that this was hard, that something was taken from you, and that you were allowed to be angry about it. You felt like you had to turn your suffering into something inspiring before anyone would understand its impact, as though your pain needed to have a purpose before it was worthy of being seen.

The truth is, your pain did not need a purpose to be valid. Your struggles did not need to make you stronger for them to matter. You were allowed to grieve what you lost without feeling like you were failing to appreciate what you still had. You were allowed to wish things had been different while still being proud of the person you became.

What happened to you was difficult. It was unfair. It changed your life in ways you never asked for. You do not have to pretend otherwise.

I am sorry for the moments when you blamed yourself. I am sorry for every time you wondered if you were trying hard enough, doing enough, or somehow failing because your body was not recovering the way you wanted it to. I am sorry for every time you apologized for needing help, for resting, for changing plans, or for taking up space.

You were never a burden because you needed support. You were never less valuable because your life looked different. You were never difficult because you were struggling. You were a person going through something incredibly difficult, trying to navigate a world that was not always built with you in mind.

I know you still wonder who you would have been without all of this. I know there are parts of your old life you miss. I know you miss the person who did not have to think about pain before getting out of bed. The person who could make decisions without calculating the impact on their body. The person who did not have to explain why they looked fine but were not fine.

I miss that person too.

But I also want you to see the person you became. Because despite everything you lost, you did not lose yourself.

You became someone who understands suffering in a way you never wanted to. You became someone who listens differently because you know what it feels like to not be heard. You became someone who notices the struggles people hide because you know what it is like to carry something invisible. You became someone who fights for others because you know what it feels like to fight alone.

That does not mean getting sick was a gift. It was not. I will never believe that suffering had to happen for you to become a good person. You were already kind before you were sick. You were already valuable before you had a diagnosis. You were already enough before your life changed.

But I am proud of the person you became despite everything.

I am proud of every appointment you walked into when you were tired of explaining yourself. I am proud of every setback you survived. I am proud of every moment you thought you could not continue but somehow found a way forward. I am proud that you kept believing there was more to your life than your pain.

You did not choose this journey, but you chose yourself again and again.

And maybe that is what I want the version of me who got sick to know most: you do not have to spend the rest of your life trying to become the person you were before. That person was important, and they deserve to be remembered, but they are not the only version of you worth loving.

The person you became deserves love too. The person who needs accommodations deserves love. The person who has bad days deserves love. The person who rests deserves love. The person who struggles deserves love.

You were worthy before illness. You are worthy during illness. You will always be worthy, regardless of what your body can or cannot do.

So, to the version of me who got sick, I am sorry that this happened to you. I am sorry you had to learn things no one should have to learn. I am sorry you had to become stronger in ways you never asked for.

But I also want to thank you.

Thank you for surviving the moments I thought would break you. Thank you for continuing when things felt impossible. Thank you for becoming someone who uses their experience to make other people feel less alone.

Most importantly, thank you for reminding me that a life can change completely and still be meaningful.

You were never the version of me that was ruined.

You were the version of me that had to rebuild.

And I will spend the rest of my life making sure you know that you were always worth fighting for.

With love,

Me.

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There is absolutely nothing wrong with those things. For many people, movement, fitness, nutrition, and healthy routines are meaningful parts of their lives. They can provide confidence, structure, connection, and joy. They can be powerful ways to support physical and mental health. The problem is not that these things exist. The problem is that we have started treating one version of wellness as the only version.

Somewhere along the way, we began measuring health from the outside. We started assuming that the person who is doing more, moving more, and accomplishing more must automatically be healthier than the person who cannot. We began confusing productivity with wellness and achievement with health. We turned wellness into something that could be displayed and proven, something that looked impressive to other people. But health has never been that simple. A person’s ability to constantly achieve, perform, and push themselves does not tell the full story of their health. Someone can look healthy from the outside while struggling in ways nobody sees. Someone can be incredibly strong while needing rest. Someone can be taking care of themselves even when their wellness does not look productive, impressive, or inspiring.

We have created a culture that rewards people for ignoring their own needs. We celebrate the person who wakes up earlier, works harder, pushes further, and refuses to stop. We admire the ability to overcome exhaustion, pain, and limitations. But we rarely stop to ask whether constantly pushing yourself is actually an act of wellness. Somewhere along the way, we have confused endurance with health and suffering with strength.

I think part of the reason this conversation matters so much to me is that I know what it feels like to think you are failing at wellness. When your body does not allow you to participate in the version of health society celebrates, it can become incredibly easy to believe that you are not doing enough. You begin comparing yourself to people with completely different circumstances, abilities, and experiences. You start measuring your worth by what your body can no longer do, instead of recognizing everything it takes to care for yourself in the reality you are living in.

Living with chronic pain has changed the way I understand wellness. It has forced me to question a definition of health that is often based on what the body can accomplish rather than how a person cares for that body. When your body changes over time, when your abilities shift, or when simply getting through the day requires more effort than anyone else realizes, you begin to see how limited society’s definition of wellness truly is.

The reality is that not everyone has the same starting point.

Many people are navigating bodies and circumstances they never chose. Some people are managing chronic illness, disability, injuries, mental health challenges, financial barriers, caregiving responsibilities, or limited access to resources. These realities shape what wellness can look like. For some people, wellness is running a marathon. For others, wellness is walking to the mailbox after their body has spent years making even simple tasks feel impossible. For some people, wellness is pushing themselves through an intense workout. For others, wellness is learning that constantly pushing past their limits is not strength; it is a way of breaking themselves down further.

We rarely talk about that version of wellness because it does not fit the picture we are used to celebrating. It does not come with a medal, a transformation photo, or a perfectly curated social media post. It is the version where accomplishments are invisible. It is getting out of bed on a day when your body is fighting against you. It is taking your medication, going to appointments, managing symptoms, asking for help, adapting your expectations, and making the decision to rest before your body forces you to.

These forms of wellness often go unnoticed because they are not always visible. They do not come with obvious achievements or external recognition, but that does not make them any less meaningful. In fact, sometimes they require a different kind of strength. There is strength in knowing your limits. There is strength in adapting. There is strength in continuing to care for yourself when the outcome is not a transformation story, but simply the ability to keep going.

We took the idea of caring for ourselves and turned it into another form of self-improvement. Instead of asking, “What do I need right now?” we are encouraged to ask, “What can I do to become better?” Rest has become something we have to earn. Relaxation has become something we have to schedule. Even self-care has become something that feels like another responsibility we have to complete correctly.

There is something deeply contradictory about a culture that tells people to prioritize themselves while simultaneously making self-care feel like another thing they can fail at. We are told to slow down, but often only in ways that allow us to return more productive. We are encouraged to rest, but often with the expectation that rest should prepare us to work harder afterward.

But what happens when rest is not a tool to help you become productive again? What happens when rest is necessary? What happens when taking care of yourself does not lead to some dramatic transformation story, but instead allows you to continue living your life?

For many people, especially those living with chronic illness or disability, wellness does not look like adding more habits, more routines, or more goals. Sometimes wellness looks like removing expectations. Sometimes it looks like cancelling plans because your body needs rest. Sometimes it looks like choosing the easiest option because you do not have the energy for the ideal one. Sometimes it looks like accepting that surviving a difficult day was enough.

Those forms of care rarely get celebrated because they do not fit the image we have been taught to admire. They are not aesthetic. They are not impressive. They cannot always be photographed, shared, or turned into inspiration. They are quiet decisions made behind closed doors by people who are simply trying to care for themselves given the circumstances they are living with.

Maybe it is time we change the way we think about wellness. Maybe we need to stop viewing wellness as a performance and start viewing it as a relationship with ourselves. Wellness is not about becoming the most impressive version of yourself. It is not about proving that you are disciplined, productive, or capable enough to deserve care.

A person who runs a marathon and a person who fights through a difficult day are both showing strength. Their strength looks different. One person’s accomplishment does not become more valuable because it is easier for society to recognize. One person’s struggle does not become less meaningful because it is invisible.

Wellness was never supposed to be about becoming someone else. It was supposed to be about learning how to take care of the person you already are, in the body you have, within the life you are living.

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Some realities exist completely outside our control, and no amount of reframing, discipline, or perspective changes that fundamental fact. Illness is not a choice. Disability is not a choice. Trauma is not a choice. Grief is not a choice. Poverty, loss, family circumstances, discrimination, systemic barriers, and countless other hardships can profoundly shape the course of a life without ever being chosen. They shape access, opportunity, stability, and capacity in immediate and ongoing ways, not abstract ones. Some limitations are real and unavoidable, some obstacles are significant, and some burdens are genuinely unfair in ways that do not respond to mindset or effort. Acknowledging agency does not require denying any of that, and any honest conversation about human behaviour breaks down the moment it ignores those realities.

Part of why I feel strongly about this comes from years of learning, not in theory but in practice, the difference between what I can control and what I cannot. Chronic pain forces that lesson into your life whether you are ready for it or not. It strips away the idea that effort guarantees outcome or that intention always leads to direction, and it introduces limits that determination, optimism, discipline, or hard work cannot override. There are things I cannot do. There are opportunities I have lost. Some experiences have permanently changed because of circumstances I never chose and would never choose. No amount of positive thinking changes those realities. At the same time, living with chronic pain has also taught me something else that many people never have to confront so directly. Losing control over some parts of your life does not mean you lose control over all of it, even when everything starts to feel like a single continuous category of limitations.

That distinction became incredibly important to me because if I treated every limitation as absolute, my world would have shrunk without me noticing. I would always find a reason not to try something, not to pursue something, not to adapt, not to learn, not to continue, not to step into anything unfamiliar. Pain could have become the explanation for everything, even for things it did not actually define. Instead, I had to learn to think differently in a way that felt necessary rather than inspirational. I had to separate what is genuinely impossible from what is difficult, uncomfortable, uncertain, or inconvenient, and those categories are not the same, even though people often treat them as interchangeable, because collapsing complexity feels easier than sitting inside uncertainty.

Maybe that is why I have become increasingly sensitive to something I notice in other people over time. I notice how often discomfort gets mistaken for powerlessness, fear for impossibility, and uncertainty for inability. I notice how often people speak as though they have no options while refusing to engage with the options still available to them. Most of the time, this is not conscious. People do not wake up and decide to remain unhappy or deliberately choose stagnation, dissatisfaction, or resentment. Instead, the process unfolds gradually, almost invisibly, until they no longer recognize the pattern forming.

When something does not work out, they become a little more hesitant to try again. Something feels uncomfortable, so avoidance becomes the easier and more automatic option. A few disappointments begin to carry more weight than they should, not because they are decisive, but because they accumulate without interruption. A few failures begin to feel like evidence rather than isolated experiences. Over time, people build a narrative without fully realizing it. They begin to tell themselves nothing will change, nothing works, nothing is possible. Eventually, that narrative becomes so familiar that it stops feeling like something they constructed and starts feeling like reality.

From the outside, it often looks like someone describing their life as unbearable while making very few changes to the structures and patterns that keep producing the same outcomes. It looks like someone who deeply wants a different life but continues to resist the very conditions that would make it possible. It looks like years of dissatisfaction paired with years of repetition, in which intense emotional experience coexists with a largely unchanged behavioural pattern. That mismatch between desire and action is where the tension becomes visible, and this is where my frustration lives. I want to be careful with that word because frustration is not judgment. In many ways, it is closer to sadness, a heaviness that comes from watching patterns repeat in ways that feel unnecessary rather than unavoidable.

I have met people who are intelligent, capable, creative, compassionate, and resilient in ways that are often obvious in one part of their life but absent in another. People with talents they never develop, interests they never pursue, opportunities they never investigate, and goals they never commit to, not because those things are unavailable to them, but because pursuing them requires stepping into uncertainty that cannot be fully controlled in advance. It requires risking failure, becoming a beginner again, tolerating discomfort without immediate reward, and confronting the possibility that change is actually possible, which is often more psychologically disruptive than believing nothing can change at all.

That last part is more frightening than people realize. If nothing can change, there is a strange and powerful comfort in that certainty. It removes responsibility, risk, uncertainty, and the possibility of disappointment. If the outcome is already decided, there is no need to engage with the process at all, no need to expose yourself to failure, no need to step into ambiguity, and no need to risk discovering something different about yourself or your circumstances.

The problem is that this certainty often comes at an enormous cost. Years pass. The same complaints remain. The same frustrations remain. The same routines remain. The same dissatisfaction remains. The same explanations remain. Eventually, people begin to use the results of that repetition as evidence that change was never possible in the first place, rather than recognizing that repetition itself may have shaped those outcomes.

The cycle becomes self-reinforcing in a way that is difficult to see from inside it. The same thoughts lead to the same actions. The same actions lead to the same outcomes. The same outcomes get interpreted as proof that the original thoughts were correct. What begins as fear slowly transforms into something that feels like a worldview, stable and factual simply because it has been repeated enough times without interruption.

I think that is one of the reasons perspective matters so much to me, not because it solves problems or eliminates suffering, but because it shapes how we interpret possibility itself. Living with chronic pain forced me to confront limitations that were real and unavoidable. Because of that, I became deeply aware of how important it is not to impose additional limitations on top of those that already exist. When you already have enough genuine barriers, creating extra ones through assumption, fear, or avoidance becomes something you cannot afford without slowly shrinking your range of movement in life.

That does not mean everyone should be relentlessly positive, because I have very little patience for that kind of thinking. Some situations are genuinely terrible. Some circumstances deserve grief, anger, frustration, and disappointment, and pretending otherwise does not create clarity; it creates distance from reality. What I struggle with is something different. I struggle with the pattern of people describing themselves as trapped while refusing to test the boundaries of the cage, or declaring that nothing is possible while dismissing every possibility before it has been meaningfully engaged with. I struggle with the certainty that often accompanies these beliefs despite the absence of real attempts to challenge them in practice rather than in thought. Most of all, I struggle with it because I do not think people deserve the lives they are quietly reinforcing for themselves. That is the part that stays with me.

I do not look at these situations and think people are lazy or weak. More often than not, I think they are scared. I think they have become attached to familiarity because it feels safer than uncertainty, even though it is also the source of their continued dissatisfaction. I think they have repeated the same story for so long that questioning it feels threatening rather than liberating. I think they have confused predictability with safety in a way that becomes self-protective over time.

And I understand that. Truly, I do.

Change is uncomfortable. Trying something new is uncomfortable. Failing is uncomfortable. Looking foolish is uncomfortable. Starting over is uncomfortable. Uncertainty is uncomfortable. But discomfort and impossibility are not synonyms, even though they often feel identical from the inside when you are living inside them day after day.

One of the hardest lessons I have learned is that life is rarely transformed through dramatic reinvention. Most meaningful change begins with interruption. A different decision. A different habit. A different environment. A different conversation. A different response to the same situation. The change itself is often small enough to feel insignificant in the moment, but what matters is that it disrupts the cycle long enough to prevent repetition from quietly reasserting itself as identity. Without interruption, repetition takes over. The same thoughts create the same behaviours. The same behaviours create the same experiences. The same experiences reinforce the same beliefs. Eventually, the cycle becomes so familiar that it stops feeling like something that is happening and starts feeling like something that is.

That is why I keep returning to this question, even though I am not entirely comfortable with it: at what point is your misery a choice?

Not because suffering is chosen. Much of it is not. Not because hardship is deserved. Often it is not. Not because life is fair. It is not. The question exists in the space between limitation and agency. It exists in the gap between what has happened to us and how we respond to it. It is about the difference between what we cannot control and what we still have influence over, even if that influence is limited. I do not think misery is usually chosen in a single moment. I think it is more often reinforced through repetition, avoidance, fear, and the protection of familiar patterns that no longer serve us as they once did, or perhaps never did at all.

And maybe that is why the question matters. If misery can be reinforced, then it can also be interrupted. The most important changes do not begin when circumstances improve, but when someone becomes willing to challenge the story that improvement is impossible in the first place. Freedom does not begin with the absence of limitation, but with the recognition that limitation and possibility can exist at the same time without cancelling each other out. The tragedy is not that people suffer, for suffering is an unavoidable part of being human and inseparable from life itself. The tragedy is when people become so convinced that nothing can change that they stop allowing change to prove itself in the first place.

That is the part I find hardest to watch, not because I think life should be easy, but because I think many people are far more capable than they believe, and sometimes the thing standing between them and a different future is not the absence of possibility, but the absence of interruption.

When people talk about a broken system, they are usually referring to overcrowded emergency departments, physician shortages, endless waitlists, funding issues, or the growing difficulty of accessing basic care. These problems are real, and they deserve attention. But they are also symptoms of something larger. The healthcare system is not failing because one part has stopped working. It is failing because many of the assumptions it was built on no longer reflect the reality of the people moving through it.

This is not an argument that modern medicine has failed. Far from it. Medicine has advanced in ways that would have been unimaginable only a few generations ago. Once fatal diseases are now treatable. Injuries that once meant permanent loss can often be repaired. Diagnostic tools, surgical techniques, and treatment options continue to improve at a remarkable pace. Every day, healthcare professionals save lives, reduce suffering, and help people return to their families.

That reality matters.

But it is equally important not to confuse medicine itself with the systems that deliver it. Criticism of healthcare is often misread as criticism of science or clinical practice, when in reality the issue is not what medicine can achieve, but how it is structured, accessed, and experienced. Medicine has progressed. The system around it has not always kept pace with the complexity of the people it serves.

Even for patients with relatively straightforward conditions, the system does not always function as intended. Diagnoses are missed. Symptoms are dismissed. Medical errors occur. Patients wait months or years for answers that should have come far sooner. Sometimes, serious conditions are only identified after significant progression. No system is flawless, even for patients whose conditions fit neatly within medical textbooks. The difference is that most people experience these failures briefly. They go through a difficult period, receive treatment, and move forward with their lives.

For those living with chronic illness, chronic pain, disability, or complex medical conditions, there is no moving forward in the same way. They remain inside the system indefinitely. What others experience as isolated failures becomes their ongoing reality.

This is where one of the healthcare system’s deepest structural flaws becomes visible. It was built on the assumption that patients get better. The entire flow of care reflects this expectation: symptoms appear, care is sought, diagnosis follows, treatment begins, recovery occurs, and life returns to normal. It is a narrative so deeply embedded in modern medicine that it often goes unquestioned.

Yet many people do not fit this story.

Some conditions do not resolve. Some symptoms do not disappear. Some lives do not return to what they once were.

Recovery is not always the destination, because recovery may not exist.

Instead, many patients are left trying to build meaningful lives around limitations that medicine cannot remove. But healthcare systems remain largely structured as though improvement is always the expected outcome, leaving a significant gap between what the system is designed to do and what many patients actually need.

For these patients, healthcare gradually becomes something more than medical care. It becomes administration.

Chronic illness is often imagined only through symptoms: pain, fatigue, nausea, neurological changes, mobility limitations, and more. These are real and life-altering, but they are only one part of the experience. The other part is the constant administrative labour required to stay within the system.

Managing care can become a second full-time responsibility. It involves navigating referrals, coordinating multiple specialists, tracking medications, organizing records, completing paperwork, waiting for approvals, and repeatedly re-explaining complex histories to providers who are meeting you for the first time. Over time, many patients find themselves functioning as project managers of their own healthcare.

The irony is difficult to ignore. The people with the least energy are often required to carry the greatest administrative burden.

What makes this even more difficult is how much responsibility is placed on the patient to keep the system functioning at all.

Patients are expected to advocate for themselves, research their conditions, monitor symptoms, coordinate communication between providers, and ensure information does not get lost between appointments or departments. They are expected to remain organized, informed, persistent, and emotionally regulated while also managing the condition that brought them into care in the first place.

When the system fails, the response is often repetitive: follow up again, call again, ask again, push harder, advocate more effectively.

In theory, patient advocacy is empowering. In practice, it often becomes a survival skill developed out of necessity, because the alternative is being overlooked.

Nowhere is this tension more visible than in the way healthcare responds to uncertainty.

Medicine depends on evidence, and it should. Testing, imaging, and objective findings are essential tools of modern care. The problem arises when the absence of clear results is treated as the absence of illness.

Many patients know what it feels like to receive normal test results while living in bodies that are anything but normal. They sit across from clinicians trying to describe symptoms that have fundamentally altered their daily functioning, only to be told that nothing conclusive appears in the data.

In those moments, two realities exist at once: the reality documented in medical records and the reality lived every day.

And when they conflict, lived experience is often given less weight.

Dismissal in healthcare is rarely dramatic or explicit. More often, it is subtle and accumulative. A rushed appointment. A quick suggestion that stress may be contributing before other causes are fully explored. A quiet implication that concern itself may be amplifying symptoms. Individually, these moments may seem small. Over time, they become something heavier.

Patients begin to doubt themselves. They question whether they are misinterpreting their bodies or overreacting to sensations that feel undeniable. Ironically, people who spend years advocating for their health are often told they are focusing on it too much, while those who stop advocating risk being forgotten entirely.

Trust does not break in a single appointment. It erodes gradually through repeated interactions that carry the same message in different forms.

You are not being heard. You are not being believed. You are not being taken seriously.

Eventually, many patients enter appointments expecting disappointment rather than care. Some bring family members because they do not trust their voice will be enough on its own. Others arrive with detailed notes, timelines, and records, not simply to share information, but to build a case for themselves.

What should feel like a collaborative relationship increasingly feels like something adversarial.

This reality is rarely discussed openly, yet it may be one of the most damaging consequences of a strained healthcare system. We often talk about waitlists, shortages, and delayed diagnoses. We talk far less about what it does to a person to lose trust in the system they depend on for care.

We talk even less about the anxiety that builds before every appointment after years of dismissal. We rarely name the fear that accompanies being believed or disbelieved again. We rarely acknowledge medical trauma as something cumulative, formed not by a single event, but by repeated invalidation over time.

Healthcare systems tend to focus on physical outcomes, but relational experiences matter too. Feeling heard matters. Feeling believed matters. Trust matters.

A diagnosis may eventually arrive. Treatment may eventually be offered. But when the path to that point is shaped by years of doubt, dismissal, and self-questioning, it becomes difficult to describe the process as successful care.

At the same time, none of this exists in opposition to gratitude.

Many patients know exactly what medicine has given them. They know which treatments improved their lives. They know which clinicians changed the course of their care. They know the surgeries, medications, and interventions that made function or survival possible.

They also know how many healthcare professionals work within constrained systems, trying to provide care under immense pressure and limited resources.

This is what makes the conversation so complex.

Patients are often expected to choose between gratitude and criticism, as though acknowledging one invalidates the other.

But both can be true at the same time.

A person can be deeply grateful for life-changing care while still recognizing harm in how that care is accessed or experienced. They can value individual providers while still questioning the structure around them. They can respect medical progress while still demanding better systems of support.

The greatest failure of the healthcare system is not that it sometimes fails to cure.

No system can eliminate uncertainty, limitation, or error.

Its deeper failure is that it too often fails to care for people while they remain unwell.

It continues to measure success through recovery, even when recovery is not possible. It continues to prioritize solutions when support is what is needed most. It continues to treat suffering as something to be solved rather than something to be acknowledged, witnessed, and carried alongside the patient.

Until that changes, millions of people will continue moving through healthcare not only unwell, but profoundly alone.

It does not take long before you realize how conditional that acceptance really is. Some people will swear they can handle chronic illness until they are actually faced with it long-term. Until plans change at the last minute, until exhaustion lasts for weeks, until your body becomes unpredictable, and until hospital visits, flare-ups, and limitations stop being hypothetical and start becoming real. That is usually when people reveal who they are, because it stops being something they can romanticize and starts being something they actually have to live alongside.

Dating is already complicated for everyone. Add a chronic illness into the mix, and suddenly there are layers that many people never have to consider. There is the disclosure dilemma: when do you tell someone? How much do you tell them? Do you explain everything immediately, or wait until there is enough trust to have that conversation? And then comes the uncertainty. Will they understand? Will they ask questions? Will they quietly decide it is more than they signed up for? These are not hypothetical concerns. They are real questions that shape the entire experience.

What people fail to understand is that dating while chronically ill is not about finding someone who simply accepts your illness. Acceptance is the bare minimum. It is about finding someone who does not weaponize your illness against you later, who does not resent the accommodations your body needs, and who understands that flexibility, patience, and empathy are not optional in a relationship like this. There is a difference between someone supporting you in theory and someone supporting you when it actually costs them comfort.

And there is something deeply dehumanizing about realizing someone sees your illness as a burden before they see you as a person, or when your limitations are treated like character flaws instead of realities you are already trying to survive. You should never have to convince someone to care about your well-being, and you should never have to shrink your illness into something easier for them to tolerate just to keep them in your life.

The reality is that chronic illness teaches you what unconditional love actually looks like. Not because illness is a gift or some hidden blessing, but because it strips away the superficial. When your body is struggling, when your energy is limited, when your life does not fit neatly into someone else’s expectations, people have a choice. They can focus on what they are not getting from you, or on your well-being. Unfortunately, not everyone chooses the latter.

You can be fighting for your life, fighting through pain, fighting through exhaustion, fighting through symptoms that no one else can see, and some people will only notice that you are not showing up for them in the way they want you to. They will focus on the cancelled plans rather than the reasons behind them. They will focus on what you cannot give rather than on everything you are already carrying. They will measure your love by your availability instead of your effort.

Those are not the people you should be building a future with.

We should not waste our time on people who are more concerned about their presence in our lives than our well-being within them. Relationships cannot survive when one person’s needs are treated as valid while the other’s struggles are treated as inconveniences. Love cannot thrive where empathy only exists when circumstances are easy.

Intimacy also shifts in ways that are rarely talked about properly, not just physically but emotionally and relationally. Chronic pain and fatigue do not remove intimacy, but they make it inconsistent in ways that can be hard to navigate if there is no open communication about it. Some days, closeness feels grounding and natural, reinforcing connection. Other days, it is not possible at all, not emotionally and not physically. That unpredictability can easily be misinterpreted if it is not understood in context, because people often attach meaning to physical closeness that illness does not actually reflect. A lack of touch can be read as rejection, and a need for space can be seen as emotional distance, when in reality it is often just a shift in capacity from one day to the next. Without understanding, those gaps begin to fill with assumptions, and those assumptions can slowly shape how both people experience the relationship in ways that feel real even when they are not accurate.

There is also a quieter, more internal layer to dating with a chronic illness that often goes unspoken. It is the way you begin to pre-emptively manage yourself in relationships, not because anyone explicitly asks you to, but because you are trying to protect both yourself and the connection. You start thinking ahead: will this cancellation feel like too much? Have I explained my limitations enough? Am I being too much today? Am I not present enough? Am I too unpredictable to build a future with? Over time, that kind of internal monitoring becomes exhausting in itself because you are not only navigating your health but also how your health is perceived.

And underneath all of that, there is often a fear that sits quietly in the background, even if you do not always say it out loud:

• The fear that no one would want this.

• No one would choose this.

• How could anyone love a life that looks so different from what most people imagine for themselves?

• How could anyone love someone whose body is constantly demanding attention?

• How could anyone love a sick girl?

Those thoughts can become difficult to escape after spending enough time feeling misunderstood. They can grow from enough disappointments, enough people pulling away, enough moments where your reality felt like too much for someone else to handle. But those fears are not evidence. They are wounds. They are conclusions drawn from painful experiences, not objective truths about your worth.

Because a chronic illness does not make someone less lovable.

It does not make someone a burden.

It does not disqualify someone from meaningful relationships, deep connections, affection, partnership, or a future built alongside another person.

The harsh reality is that not everyone is willing to date someone with a chronic condition. That is true. Some people will decide it is more than they can handle. Some people will walk away. Some people will be open to dating someone with an illness, only to prove later that they are not actually capable of being the kind of partner that the relationship requires. But that is not a reflection of the worth of the person living with the illness. It is a reflection of the other person’s capacity, expectations, and limitations.

Chronic illness does not make someone unworthy of love. What it does is remove the illusion that love is simple, stable, or unaffected by real life. It removes the fantasy that relationships only require effort when it is convenient and replaces it with something more grounded and real, where connection exists in unpredictability rather than despite it. What remains, when it is healthy and mutual, is not something effortless, but something steady in a different way. Care becomes visible through consistency rather than intensity, patience becomes active rather than theoretical, and understanding becomes something that is practiced rather than claimed. It is not about someone fixing anything or making life easier, but about someone not turning your reality into something you have to apologize for or shrink to maintain.

Dating with a chronic illness is not just about finding someone who stays. It is about finding someone who does not require you to disappear to be loved. It is about finding someone who sees your illness as part of your reality, but not the entirety of who you are. Someone who understands that your value was never dependent on how much you could do, how available you could be, or how closely your life resembled everyone else’s.

Because the right person is not the person who tolerates your illness.

The right person is the one who never makes you feel like you have to earn the care, understanding, and compassion that every human being deserves.

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I think we carry them all.

Quietly.

I think there are still pieces of me frozen in moments that happened years ago.

There is still a fifteen-year-old version of me standing on a volleyball court with absolutely no idea that her entire life is about to split into a before and after. There is still a version of me that believed injuries healed the way you’re told. That pain was temporary. That life would eventually return to normal.

She still exists somewhere inside me. And so does every version that came after her.

The terrified version. The angry version. The exhausted version.
The version learning how to survive hospital rooms, surgeries, medications, appointments, procedures, uncertainty, and the unbearable loneliness that can come with becoming chronically ill at such a young age.

People see the current version of me and assume this is who I have always been. But they do not see the museum inside of me. They do not see the exhibits I carry every single day.

The grief exhibit. The trauma exhibit. The chronic pain exhibits.
The “learning how to stay alive inside a body that betrayed me” exhibit.

Because chronic illness changes you in ways people do not fully understand unless they have lived it.

It is not just pain.

Pain is only one room in the museum.

Chronic illness changes the way you view time. Relationships. Your future. Your body. Your safety. Your identity. It forces you to grieve things other people never even have to think about grieving.

I grieved the body I had before pain.
I grieved the simplicity of existing without constantly calculating energy levels, symptoms, limitations, flare-ups, recovery times, appointments, medications, and uncertainty.
I grieved the person I thought I would become before survival became my full-time job.

And the hardest part is that grief does not fully leave. It simply becomes part of the collection.

I think that is what this quote made me realize.

I am not only a person. I am an archive.

A living archive of everything that ever mattered enough to leave something behind.

I carry every surgery with me.
Every moment, I felt dismissed.
Every night, pain kept me awake while the rest of the world continued moving normally.
Every friendship that survived this version of my life.
Every person who left because my reality became too inconvenient or too difficult for them to understand.

I carry every moment I had to learn how to rebuild myself from nothing.

But I also carry the things that kept me alive.

The people who stayed.
The nurses and doctors who listened.
The moments of hope after years of feeling hopeless.
Anything that made the unbearable feel survivable for a few minutes at a time.
Conversations that reminded me I was still human underneath all the pain.
The parts of myself that refused to disappear, no matter how badly life tried to break them.

I think museums are beautiful because they preserve history. They say: this mattered. This existed. This changed something.

And maybe that is what people are, too.

Maybe every person is simply a museum of everything they survived and everything they loved.

When I think about my own life, I realize there are entire wings inside me dedicated to resilience. Entire sections built from grief. Entire rooms filled with memories I still cannot revisit without feeling something crack open inside my chest.

There are parts of me still grieving the life I imagined for myself before chronic pain became permanent.

Because that is another thing people do not talk about enough: when you become chronically ill young, you do not just lose your health. You lose the assumption of a normal future. You lose certainty. You lose innocence. You lose the ability to move through life without constantly being aware of your body.

You become hyperaware of suffering.
You become hyperaware of how fragile life actually is.

And once you know that, you can never unknow it.

I think that is part of why I feel things so deeply now. Why certain words stay with me. Why certain things now physically hurt to revisit or remember. Why small moments matter so much more than they used to.

Because when your life changes overnight, you learn very quickly that nothing is guaranteed.

And somehow, despite all of it, there are still beautiful things inside the museum.

There is still laughter.
Still connection.
Still purpose.
Still love.

There are still parts of me that are soft despite everything life has done to harden me.

And maybe that is the most miraculous thing of all.

Not that I survived.

But after everything, I still can care deeply. To love deeply. To feel deeply. To continue letting life affect me instead of shutting down completely.

Because it would have been so easy to become bitter.

And some days, if I am being truthful, I still am.

Some days, I am angry at what chronic pain stole from me. Angry at the years spent surviving instead of living. Angry at how much of my youth disappeared inside hospitals, recovery periods, fear, exhaustion, and pain levels no number scale could ever accurately explain.

Some days, I mourn the person I could have been.

But maybe she still exists, too.

Maybe every version of me still exists somewhere inside this museum.

The hopeful one. The grieving one.
The broken one. The healing one.
The terrified teenager. The exhausted adult.
The person I was before pain. The person pain forced me to become.

Maybe none of them are gone.

Maybe they are all standing quietly inside me, waiting to be remembered.

And maybe that is why this quote affected me so much.

Because when I look at my life honestly, I realize I am not just carrying pain.

I am carrying everything.

Every loss. Every memory. Every person. Every wound. Every moment of survival. Every piece of love that stayed long enough to leave fingerprints on my soul.

I am a museum of everything I’ve loved.

And despite everything, I think that is something beautiful.

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Before all of this, I never really questioned whether my body would allow me to live the life I imagined for myself because I never had a reason to. You assume your body will work the way it is supposed to. You trust it without thinking about it. Then one day, something changes, and suddenly your entire life feels unfamiliar.

Developing Complex Regional Pain Syndrome after a leg fracture and surgery was not my fault. I did not choose it, cause it, or fail my way into it. CRPS is rare, unpredictable, and can happen to anyone. It just happened to me. Everything that followed, from surgeries involving my leg, hips, shoulder, and back, to the appointments, flare-ups, exhaustion, grief, and the way my entire life changed after my accident, was also outside of my control. That is one of the hardest things to accept when you live with a chronic illness. Not just the pain itself, but the realization that your own body can completely alter the direction of your life without asking for permission first.

One of the hardest parts of all of this is accepting that pain is not temporary for me. It is something that exists in my life every single day in some form. There are days when I cannot get out of bed, when my body completely takes over, and resting is no longer a choice I get to make. I used to fight against that reality because accepting it felt too close to giving up. But I have learned that ignoring my limits does not change them; it just leaves me frustrated with myself for not being able to function the way I want to.

Living with a chronic illness is not just about managing pain. It is also about learning how to build a life alongside something that does not go away. I still want experiences, memories, laughter, and moments that are mine and not defined by my illness. But those things do not exist separately from my body. Even good days can come with consequences, where a full day is followed by exhaustion or a flare-up that lasts far longer than the moment itself.

So it is not really a choice between living and avoiding pain. It is about learning how to live with it in the background of everything I do. Some days that means resting. Some days it means pushing through. Some days it means dealing with the aftermath. I still do not know if there is a perfect balance, but I am learning that it is not something you figure out once. It is something you keep adjusting to as you go.

Over time, I realized that adjustment is not only physical; it is also mental. Chronic illness changes the way you relate to your own body. That is the thing people underestimate the most: how terrifying it is to lose trust in yourself physically. Living with a chronic illness forces you to think about things most people never even notice. You start calculating everything. How much walking will this involve? How long will it take me to recover from this? If I push myself too hard today, will I be stuck in bed tomorrow? Eventually, it becomes automatic, like your brain is constantly trying to predict outcomes before anything has even happened.

For a long time, I thought staying mentally ahead of everything would make me feel more prepared. I believed that if I expected the worst-case scenario in advance, it would not hurt as much when it actually happened. But instead, it only left me exhausted in a way that had nothing to do with my body. I became angry, frustrated, and mentally drained from trying to manage situations in my head before they even played out in real life.

Don’t get me wrong, I still have moments where I spiral. I still overthink symptoms or get stuck thinking about what my future might look like. But I am slowly learning that there is a difference between dealing with what is actually happening and sitting in every possible outcome at once. One is reality. The other is exhausting yourself over things that have not even happened.

No one prepares you for how lonely it feels to want more from life than your body can safely give you. It is one of those things that is hard to explain unless you are living it. Your mind still wants things your body cannot always keep up with. You watch people your age move through life without having to think about medications, surgeries, recovery time, flare-ups, or whether they will physically be able to handle something tomorrow. Meanwhile, your life slowly becomes shaped around adapting, recovering, and figuring out what is possible in the moment.

Chronic illness also changes your relationship with time. It interrupts the timeline you thought your life would follow. There are moments where it feels like everyone else is moving forward while you are just trying to manage what is in front of you. I am trying to remind myself that different does not mean behind. My life was interrupted, not erased, even if I do not fully believe that every day.

There is also a kind of grief that comes with chronic illness that does not really have an endpoint. It is not something you move through once and leave behind. It shows up in different ways over time. You grieve treatments that did not work. You grieve doctors you trusted who could not help you. You grieve versions of yourself that felt easier, lighter, or more certain. You grieve plans that no longer fit your reality.

And even when you understand logically that none of this is your fault, guilt can still find its way in. I know I did not cause this. I know I am doing everything I can. But there are still moments where my mind questions it anyway, wondering if I should be doing more or handling things differently. Chronic illness has a way of turning something completely out of your control into something you still somehow feel responsible for, even when you were never meant to be.

Over time, I have started to understand that letting go of control does not mean giving up entirely. It means learning where control actually exists and where it does not. I cannot control my diagnosis. I cannot control the fact that my body still hurts. I cannot control flare-ups or setbacks, or whether a treatment will work. But I can control how I respond to all of it. I can control how I speak to myself on hard days. I can control whether I let guilt take over my thinking, or whether I let fear shrink my life. I can choose grace for myself when surviving the day is all I can manage.

Some days are still harder than others. Some days I feel capable, and other days I feel like I am just trying to understand myself through it all. But I am starting to realize that healing is not always about fixing what is broken. Sometimes it is about learning how to live with it without losing yourself in the process.

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I wasn’t functioning. I wasn’t living. I was existing in a body that felt like it was constantly working against me. I was practically bed-bound at this point, not because I wanted to be, but because there was no other option. Everything required energy I didn’t have and came with a level of pain that made even basic things feel impossible. Over time, my world became smaller without me fully realizing it. The things I used to do, the places I used to go, the person I used to be, all started to fade. When pain becomes that constant and that severe, it doesn’t just stay physical. It affects how you think, how you feel, and how you see your future.

At that stage, the idea of amputation didn’t feel extreme. It felt like a solution. It felt like a way out of something that no one had been able to fix.

After years of being tossed around the healthcare system, going from doctor to doctor, the only reason I was finally referred to a pain clinic was because of a complete breaking point. It came after a meltdown on my end, and my mom stepping in and fighting for help when we had both reached a point of being exhausted from no one wanting to help me (that moment is something I’ll share in its own post). It then took about a year and a half from that referral for me to actually be seen at the pain clinic.

When I finally had that consultation, I honestly don’t remember the doctor or most of that appointment at all, except for one thing. I remember leaving with a referral to explore spinal cord stimulation, and it was the first time I had ever heard of it.

That referral led to a hospital in Toronto with, at the time, the only neuromodulation program in the country. Of course, to me, this felt like just another appointment, another “maybe” after everything else had failed, with no real hope or belief that something like this could actually help manage my pain. But that appointment ended up being one of the most important moments in my entire journey. For the first time since everything started, I sat in front of a doctor and felt heard. I wasn’t questioned, dismissed, or made to feel like I had to prove anything. I was understood. It was the first time I truly believed that someone actually wanted to help me get my life back, not just manage my condition, but help me live again. That moment alone changed a lot for me because when you’ve spent so long fighting to be believed, being seen like that changes what you think is possible, because it allows you to believe in hope again, even if it’s just the tiniest glimmer.

At this point, I had been documenting my journey on Instagram for quite some time. It became almost like a public diary, where I shared what I was going through and how I was feeling in real time. Because of that, I can go back and see exactly where my head was at during different points in my journey, instead of relying on memory alone as I continue to write about this experience.

The day before the trial, I shared, “Tomorrow is SCS trial day. There is a sense of nervousness. This trial brings a lot of unknowns, but I’m going to stay hopeful that I might get my life back and get back to everything I used to enjoy.” That captured exactly where I was mentally. There was nervousness because this wasn’t a small step. There were a lot of unknowns, and I had already experienced what it felt like to hope for something and have it not work.

The next day, on February 9th 2021, I had two leads placed for the trial in my spine, with the external battery pack attached outside my body. When I woke up, I noticed a difference almost immediately. It wasn’t subtle, and it wasn’t something I had to convince myself of. It was real. My pain dropped from a constant 9/10 to around a 2–3, and it stayed there. For the first time in a long time, something was actually taking the edge off the pain.

Two days after the trial started, I had my follow-up appointment. I shared, “Today’s appointment went really well. My entire team is amazing, and I have never felt so validated, let alone have people actually care. That I want my life back.” That appointment wasn’t just about progress. It was about confirmation that this was actually working. For the first time, I didn’t feel like I was waiting for someone to believe me. We discussed the implant, and the plan was simple. If my pain continued to stay consistently low, the implant would go ahead. Life 2.0 was no longer just something I hoped for. It was something real and within reach.

On February 16th, 2021, a week after the trial, I underwent the implant surgery. From the very first time it was turned on, unless you’re my mom, you truly will never understand how much this medical device saved my life. It really is the reason I am here today. I would never have admitted this back then, but I am grateful to my younger self for holding on to that small piece of hope just a little bit longer.

That same day, I shared, “Been waiting and wishing for this day for 1200 days. I truly never thought this day would ever be a possibility for me, but today is the first day of a pain-free (of course, my definition of pain-free is different) and normal life.” That number—1,200 days—holds everything. Every failed treatment, every appointment, every moment of pain, and every time I questioned whether anything would ever change.

Two weeks after the implant, everything was healing well. I was feeling good overall and seeing a huge improvement with the stimulator. But what stood out the most wasn’t just the physical change. It was everything else. People around me started noticing something before I fully processed it myself. I was happier. Not in a forced way, or in a way where I was trying to convince myself, but genuinely. My care team noticed how different I was compared to the first time they met me, and that says everything. The version of me they met at the beginning was someone in unbearable pain, exhausted, and barely holding on. This version of me was starting to come back to life.

That surgery changed my life forever in the best way possible. I was given the opportunity for a better life, one that wouldn’t have been possible without my spinal cord stimulator. This is why I will always say that pain management is suicide prevention. In many cases, like mine, access to proper care and medical technology doesn’t just improve quality of life; it saves lives. A life where pain can be managed, even slightly, is fundamentally different from a life defined by unbearable suffering. You never know whose life you may be helping save or what future you are giving someone.

As time went on, living with a spinal cord stimulator became its own reality. It wasn’t just about the surgery anymore. It was about maintaining it, charging it, adjusting it, and learning how to live with a device inside my body that most people will never have to think about.

There were also practical considerations that became part of that adjustment. My doctor had concerns about how well my body would protect the device, since there wasn’t much natural cushioning. Because of that, my mom was asked to help me gain around 20 pounds to better support and protect it. That became part of the process too, preparing my body for something it wasn’t necessarily built for, on top of everything else.

At the one-year mark, I shared, “365 days with my SCS. Happy one year of being bionic and charging myself every few weeks. Big shoutout to my two favourite devices that keep me functioning.” That line might sound light, but it reflects something real. This device became part of how I function and how I move through my life.

My first stimulator was the SJM Prodigy MRI with burst technology. It lasted about three and a half years, but over time, it became harder to manage. I reached a point where I was charging it every other day for around three hours at a time. It wasn’t sustainable anymore, and it started to impact my day-to-day life in a way that couldn’t be ignored. The pain relief was still there, which made it clear the issue wasn’t that it had stopped working or that it had been the wrong choice. It was simply getting older and reaching a point where it was no longer practical to manage. At that point, moving forward with a replacement made the most sense.

So on July 23, 2024, I had my revision surgery, where my original stimulator was replaced with a newer model, the Abbott Eterna. That moment was a reminder that this isn’t a one-time fix. It’s something I will continue to manage and adapt to over time. And even with that, I am still so beyond grateful to have access to a medical device like this.

Getting a spinal cord stimulator didn’t take away the pain in my leg. It lowered it to a level that became manageable, a level where I could actually function and have a life worth living. It didn’t give me my old life back exactly as it was, but it gave me something I didn’t have before. It gave me a way to live again. It gave me space to exist without being consumed by pain every second of the day, to function, and to slowly find pieces of myself again. My life wasn’t restored. It was rewired. I never thought I would be on this path, but I am so incredibly grateful for the life I have now, because at one point, I didn’t know if I would have one at all.

A CT scan.
An intra-articular hip injection, done at high volume.
Followed by intensive physiotherapy aimed at releasing adhesions.
Then a return to clinic to reassess.
And if it does not work, the next step becomes clear.
Arthroscopic, keyhole surgery.

On paper, it is logical. Stepwise. Controlled.

But my body has never existed only on paper.

Because I live with Complex Regional Pain Syndrome. And even though it is in my lower leg, not my hip, it is part of every decision I make.

The current thinking is that what I am experiencing could be due to capsular retraction.

Essentially, the joint capsule around my hip may have tightened or stiffened following my previous surgery over two years ago. Instead of moving freely, the joint feels limited, and the pain is constant and extreme.

That understanding is what explains this plan.

The injection is intended to expand the joint space.
To create room.
To help disrupt some of that restriction.

The physiotherapy that follows is not general rehab. It is targeted and intentional, designed to release adhesions and restore movement while the joint is in a more open, responsive state.

It makes sense.

And that is what makes this harder.

I am not questioning whether the plan is valid. I am questioning how my body will respond to it.

Because there is a difference.

For most people, this approach is about progression. Relief, then rebuilding.

But with CRPS, especially in the lower limb, nothing involving that system behaves in a predictable way.

Even though the treatment is focused on my hip, my nervous system does not divide itself that cleanly.

It remembers.

And that memory changes the way I have to approach this.

My biggest fear right now is not the CT results. It is not even the injection itself. It is what comes after.

The intensive physiotherapy.

Because that is where variables increase. Where interpretation matters. Where someone else is guiding how far I go, how hard I push, how much is “expected.”

And that is where things can go wrong if CRPS is not fully understood.

Physiotherapy often comes with a mindset of pushing through discomfort to regain function. And in many cases, that is appropriate.

But CRPS does not follow those rules.

There is a threshold. And it is not always predictable.

Pain is not always a signal of progress. Sometimes, it is a warning.

The fear is that my hip will be treated in isolation. That the focus will stay on range, strength, and release.

Without fully accounting for the fact that my lower leg lives with a condition that can react, flare, and escalate.

That I could be pushed just slightly past what my system can tolerate. And that “slightly” could mean something much bigger in the context of CRPS.

More than anything, this comes down to one thing.

Being seen fully.

Not just as a hip case.
Not just as post-surgical stiffness.
But as someone whose body has already demonstrated how complex and sensitive it can be.

I need this plan to be carried out with that awareness. With adjustments. With communication. With an understanding that progress might not be linear or fast. That caution is not hesitation. It is necessary.

I need this treatment. And I am scared of it.

Both of those things are true at the same time.

I want pain relief. I want movement back. I want to address what is happening before it potentially leads to yet another surgery.

But I also know what it feels like when my body reacts in ways no one expected.

And that knowledge stays with me. In every appointment. Every explanation. Every step forward.

So I will move forward with the plan.

The CT.
The injection.
The physiotherapy.

But I will do it aware. Asking questions. Setting limits if I need to. Making sure the people involved in my care understand that CRPS is not just part of my history. It is part of my present.

Because success here is not just about improving my hip.

It is about doing it in a way that does not cost me more somewhere else.

And that requires more than a plan.

It requires understanding.

The Burning Ribbon.
Aidan.A

Originally published on Together Through Pain Blog.