Rebuilding identity after chronic illness: room to change
You can miss the person you were and still have a say in the person you’re becoming. There is no deadline for working that out.
I was diagnosed with chronic myeloid leukemia in January 2015. In October 2023, I had open-heart surgery to replace my aortic valve. Eight years separate those events. Put them next to each other in a short biography and the years between them almost disappear.
That is one problem with telling a life through its diagnoses. The medical events get dates. Everything else has to squeeze around them.
I’m also a father, a former humanitarian worker, a runner, and the editor of this magazine. I describe myself as a disabled person living with chronic illness. None of those descriptions cancels the others. Together, they still leave quite a lot out.
When illness changes what you can do, however, it can become difficult to recognize yourself in the life you’re living. The question reaches well beyond whether you feel physically better: who am I when the routines and roles I relied on no longer fit?
Why illness can disturb your sense of self
Rebuilding identity after chronic illness can involve finding ways to express what matters to you as your abilities and circumstances change. Some familiar parts of your life may remain; others may need support or a different form. You don’t have to recover your former life, welcome every change, or follow a timetable.
Think about how much of a person’s identity lives in ordinary habits. Being the friend who hosts dinner. Being good at a demanding job. Taking the kids somewhere on Saturday without needing to think much about the physical cost.
When those things become difficult or impossible, the loss can feel deeply personal. You may still care just as much about your friends while having less capacity to see them. You may still value your work while being unable to do it. The feeling of being yourself can become tangled up with being able to prove it.
A small study by Loraine Sonia Clur and Antoni Barnard, published online in December 2024, explored identity through interviews, documents, and diaries from three people living with chronic disease. Their accounts included disruption and loss, alongside efforts to work out a meaningful sense of self. Three cases cannot establish a universal pattern. They do offer a close look at work that rarely appears on an appointment checklist.
Nor does everyone have a clear, healthy “before” to return to. Some people have been ill since childhood. Others spent years adapting to symptoms before anyone gave them a diagnosis. A story that begins with “the day everything changed” will always leave people out.
You’re allowed to still be learning
In her 2025 paper, “Chronic illness as transformative activity,” philosopher Victoria Paul suggests that we should pay more attention to what people do while learning to live with illness.
Her argument draws on philosopher Agnes Callard’s work on change that happens through activity over time. In everyday language: you may discover what a changed life means while living it, without knowing the destination in advance.
Paul doesn’t deny that illness can arrive as a shock or turn a life upside down. She argues that this can coexist with an ongoing process in which the ill person participates. The paper is a philosophical argument about experience and choice. It does not test a treatment or prove that a particular attitude produces better health.
I find that distinction useful because the familiar recovery story has such an impatient ending. Something happens. You struggle. Eventually you adjust, and everyone can stop worrying.
Chronic illness is often less considerate of the plot.
You can work out a routine and then need to change it. You can feel comfortable asking for help in one part of your life and hate doing it somewhere else. A decision that suited you two years ago may make little sense now.
That does not automatically mean you failed to accept your illness. It may mean circumstances changed, or that you now know something you couldn’t have known earlier.
What rebuilding identity can look like
The practical question can be smaller than “Who am I now?” Try: what do I miss about this part of my life, and is any of it still available to me?
These are possibilities to think with, not a recovery program.
Look at what an activity meant to you
Suppose hosting dinner mattered because you enjoyed bringing people together. Someone else might cook while you choose the music. A shorter visit might be possible. Or hosting may be out of reach entirely for now, and the useful question becomes how friends can stay connected without making you organize everything.
None of those options has to feel equivalent to what you lost. You can value a smaller gathering and still miss the old evenings.
Running is part of my life alongside leukemia, peripheral neuropathy, and heart disease. I would never turn that fact into a standard another ill person has to meet. A race result cannot measure how well someone has adapted to illness. Neither can returning to work.
There should be room to care about an activity without making your ability to perform it the price of belonging.
Make room for provisional decisions
You might try meeting a friend at home rather than at a restaurant. You might decide that one regular commitment is enough. You might stop doing something you have been preserving mainly because other people expect it.
Where a choice is reversible, it can be a trial rather than a declaration about the rest of your life. “This works for me at the moment” is a complete explanation.
You’re also allowed to discover that an adjustment doesn’t help. There is no obligation to keep an unsuitable arrangement because you were initially grateful someone suggested it.
Keep the language that feels like yours
I use the word disabled about myself. It is an accurate part of how I describe my life, and I don’t need to erase it to make room for everything else.
Other people make different choices about language. Those choices belong to them. Being told “don’t let your disability define you” can make an ordinary act of self-description sound like a personal defeat.
You can let illness matter. You can talk about it frequently, rarely, or differently depending on who is asking. You do not owe every acquaintance a statement about your identity.
Leave some losses unresolved
There may be parts of your old life you cannot replace. Advice about finding a new hobby can land badly when what you miss is a career, privacy, or the ability to get through an afternoon without negotiating with your body.
I don’t think every loss needs a compensating benefit. Nor should pressure to stay positive about chronic illness decide which feelings are welcome.
A person can make a useful adjustment on Tuesday and resent needing it on Wednesday. Both days belong to the same life.
Support changes the choices available
Here is where I would put a firm qualification around any account of adapting to illness: choice depends partly on what is actually available.
For a reader in the United States, an idea such as reducing work hours may raise immediate questions about income and employer-sponsored health coverage. Meeting friends may depend on accessible transportation. Getting help at home may depend on money, family availability, or services that are difficult to obtain.
Calling adjustment an active process must never become another way to blame people for conditions they cannot change.
Someone managing severe symptoms may have very little room to experiment. Keeping a necessary routine going can take everything they have. Resting, relying on care, or communicating a preference with assistance must not be treated as evidence that they have stopped participating in their own life.
People around us have responsibilities here. If a friend can only visit briefly, make the brief visit worthwhile. If someone needs help communicating, give them time and the support they choose. If a plan is inaccessible, change the plan before offering advice about confidence.
And ask before taking over. Johana Schwartz’s account of strangers mistaking disability for an invitation to intervene shows how easily supposedly helpful behavior can disregard a person’s wishes.
A useful question is: “What would make this easier for you?” Then listen, including when the answer differs from what you expected.
A life can remain unfinished
My leukemia diagnosis is more than a decade behind me. My heart surgery came years later. Describing those events as a single before-and-after story would be tidy, but inaccurate.
I’m comfortable leaving the story open.
You may want to hold on to familiar parts of yourself. You may want to change others. You may be too exhausted to spend much time considering the question at all. None of that gives someone else permission to decide who you are becoming.
For now, perhaps there is one decision you want to make differently, or one part of your life you want help keeping. It can be small. It can change again.
You don’t owe anyone a finished version of yourself.
Source and adaptation note
This article draws on and adapts ideas from Victoria Paul, “Chronic illness as transformative activity,” Medicine, Health Care and Philosophy 28, 177–184 (2025), © The Author(s) 2025, published under the Creative Commons Attribution 4.0 International License. The material has been substantially rewritten and reorganized for a general audience, with additional research, Brendan McDonald’s lived experience, and editorial commentary. The original author has not reviewed or endorsed this adaptation. No source images have been reproduced.
