I feel well now. I don’t want to lose sight of what’s happening.

FEELING STABLE

“Arjun” is a pseudonym. His story is real and shared with his permission.

I’ve been dealing with my health for as long as I can remember.

I had eczema as a child, which later became psoriasis. I also had gut problems from a very young age. I remember being about eight or nine and being tested because I had blood in my stools.

At first, nobody really knew what was causing it.

By the time I was 14 or 15, things had become much worse. There were times when my symptoms were so bad that leaving the house was difficult.

Eventually, I had a colonoscopy and was diagnosed with ulcerative colitis.

For years, my condition shaped my life

After my diagnosis, I came under NHS care and started treatment.

Getting my ulcerative colitis under control wasn’t quick. For years, I went through periods of flares and different treatments. At university, there was a point when things became so difficult that I had to leave for a few months and go home.

When you’re going through something like that, your health isn’t something happening in the background.

It determines what you can do, where you can go and how you plan your life.

Today, things are very different

My health is much better now.

I can still have a flare, but they’re much less frequent and usually far milder than they used to be. My psoriasis also comes and goes.

After years of living with these conditions, I’ve become very aware of my body. I know what normal feels like for me and I can often tell when something is beginning to change.

But because I’m well most of the time, I’m also much less disciplined about tracking everything than I would be if I were struggling every day.

That’s the strange thing about feeling better. When your condition stops dominating your life, it’s easy to stop paying attention to it.

Most of my health history is in my head

I’ve never really had one place where I’ve tracked everything.

When my ulcerative colitis was particularly active, I did some journalling. My GP and specialists had their notes. But much of what I’ve learned about my body over the years is simply something I remember.

I know roughly what my usual patterns are. I notice when something changes. I know there are things that seem to make my psoriasis worse.

But I’ve never systematically captured those patterns.

After living with this for decades, I know my body well. I just don’t necessarily have the data to show someone else what I know.

Being stable doesn’t mean I stop thinking about my health

When you’re feeling well, there can be a temptation to think, I’m fine. Why do I need to keep thinking about this?

I understand that feeling because I do it myself.

But ulcerative colitis hasn’t disappeared just because it isn’t affecting my everyday life in the way it once did.

There are still check-ups to think about. There are still changes in my body that I want to notice. And there are longer-term questions about my health that don’t simply disappear when my symptoms settle.

I don’t want to spend my life worrying about my condition. But I don’t want to ignore it either.

I want someone to see the whole person

One of the most important things I’ve learned is how valuable it is to have a doctor who listens.

I trust doctors and specialists. But I also think that after years of living with a condition, you develop an understanding of your own body that matters.

You know what normal feels like. You know when something has changed. You know what you’ve tried and what seems to help.

For me, the best healthcare is a conversation between those two kinds of expertise.

I know my body better than anybody else. I want a clinician who is willing to listen to that as part of the picture.

Support matters even when other people can’t completely understand

My family has been important throughout my health journey, particularly my wife.

But I’ve also realised that it’s difficult for somebody who hasn’t experienced a condition to fully understand what a flare feels like.

During a flare, you might be exhausted. You might be dealing with gastrointestinal symptoms. You might not be able to do as much around the house or with the children.

Sometimes what you need isn’t for someone else to fix it.

You just need them to understand that you’re not feeling like yourself.

I want to stay well without making health my whole life

I’ve already experienced the other extreme.

I know what it’s like when a condition dictates your day. When you can’t leave the house. When you have to step away from university. When managing your health becomes one of the biggest things in your life.

I’m fortunate that I’m not there now.

What I want today is different.

I want to understand what’s happening in my body, notice meaningful changes and keep on top of the things that matter, without having to become obsessed with tracking every detail.

For me, success isn’t thinking about my condition every day. It’s having the confidence to get on with my life while knowing I’m still looking after myself.

A note from mOI
Feeling well doesn’t mean losing sight of your health
Arjun shared his story with us before mOI was available. His experience helped reinforce the need for an easier way to keep symptoms, results and health information together, understand your baseline and notice meaningful changes over time without making your condition the centre of every day.
Keep track of what matters  →

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Name changed to protect the participant’s privacy. This story is based on a real interview and is shared with permission. Some details have been omitted to preserve anonymity. Interviewed by Carol Sun-Schuster and Raquel de Aymerich for mOI.