When Illness Changes Who You Are
The grief nobody names
Most conversations about chronic illness are about the body. Appointments, medications, test results, what you can and can't manage this week. Those conversations matter, and there are people well qualified to have them with you.
This is about something else. It's about what happens to your sense of who you are when your body stops being something you can take for granted.
If you're living with a chronic condition, or a rare disease that few people around you have even heard of, you may already know the particular loneliness of this. The medical side gets attention. The rest of it, the part that keeps you awake, often has nowhere to go.
A life interrupted
Illness rarely arrives politely. It interrupts. The sociologist Michael Bury described this as biographical disruption: the way a serious diagnosis breaks the story you were telling about your own life, including the assumptions you never knew you were making. That you would keep working. That you would travel, or parent, or simply get through a day without negotiating with your body first.
When that story breaks, something has to be built in its place. That work is real work, and almost nobody is given time or support to do it.
Grief without a death
What follows a diagnosis often looks and feels like grief, because it is. You may be grieving your health, your independence, your career, your role in your family, your plans, or the future you had assumed was coming.
Australian researchers Elizabeth Bruce and Cynthia Schultz gave this a useful name: non-finite loss. Loss that doesn't resolve, because the thing you're grieving is ongoing. Pauline Boss described something similar as ambiguous loss, grief that has no closure and no ritual to contain it.
This is part of why chronic illness grief can feel so isolating. There is no recognised occasion for it, so people around you don't know it's happening, and you may not have named it yourself. It can also return, arriving again at each new limitation, each relapse, each thing you have to let go.
The particular weight of rare disease
Rare disease adds its own layers. Years spent seeking a diagnosis, sometimes being disbelieved along the way. Explaining your condition to clinicians who have never encountered it. Being the most informed person in the room, when what you wanted was to be looked after. And the isolation of a condition so uncommon that there may be no one nearby who shares it.
I bring both professional and personal understanding to this work. Not the same as yours, because no two people carry a condition the same way, but enough that you won't have to start from the beginning explaining what it takes out of you.
You are not your diagnosis, and you are not separate from it either
Two unhelpful stories tend to be offered to people who are unwell. One says the illness is now who you are. The other says you should refuse to let it define you, stay positive, and carry on regardless. Neither leaves much room to be a person.
Narrative therapy offers a third position. Michael White and David Epston wrote about how the problem is the problem, and the person is the person. In practice, that means we can look at the condition as something you live alongside and contend with, rather than something you have become. It also means paying attention to what illness has not taken: the things you still value, the ways you have coped that you may never have given yourself credit for, the version of you that persists underneath the appointments.
What our work might look like
There's no set programme. Some people come wanting to make sense of a recent diagnosis. Others have lived with a condition for years and have only just noticed how much grief has accumulated. Some come because the people around them are tired of hearing about it, and they need one place where they don't have to manage anyone else's feelings.
We might work with the story of your illness and how it has shaped your sense of yourself. We might attend to what your body is holding, gently and at your pace, which matters when your body is already the site of so much. We might make room for anger, or for relief, or for the thoughts you haven't said out loud because they sound ungrateful. All of it is allowed here.
Practically, telehealth means you can meet from bed if that's what the day allows, without the cost of travel on your energy. That's not a lesser option. For many people living with illness, it's the thing that makes therapy possible at all.
For family members and carers
If you're supporting someone with a chronic or rare condition, your own grief is real, and it's often the last thing anyone asks about. You may be managing your fear while staying steady for them, or grieving a relationship that has changed shape. That deserves its own space, not just space left over.
Group sessions.
One thing I hear often is how few people truly understand. That's something individual therapy can hold, but not entirely solve, because part of what's missing is other people who recognise it from the inside.
I'm planning to run small group sessions for people living with chronic illness and rare disease. A facilitated space, with room to speak and room to simply listen, alongside others who don't need it explained to them.
Details are still being worked out. If you'd like to know when they start, get in touch and I'll let you know, with no obligation to commit to anything now.
Register your interestYou don't have to explain everything at once.
If any of this sounds like your experience, you're welcome to get in touch. A free 15 minute conversation is a low-pressure way to ask questions and get a sense of whether this feels like the right fit, and there's no expectation to arrive with it all worked out.
Get in touchBury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4(2).
Bruce, E. J., & Schultz, C. L. (2001). Nonfinite Loss and Grief. MacLennan & Petty.
Boss, P. (1999). Ambiguous Loss. Harvard University Press.
White, M., & Epston, D. (1990). Narrative Means to Therapeutic Ends. Norton.