Getting diagnosed was only the beginning.

NAVIGATING FLARES

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

I was diagnosed with coeliac disease when I was five. It was always there in the background, but because I'd grown up with it, managing it became part of normal life.

Crohn's was completely different.

My symptoms started during the pandemic. I was dealing with gastrointestinal pain, brain fog and chronic fatigue. It affected almost every part of my life and I ended up missing more than a year of school.

Getting a diagnosis gave the problem a name. It didn’t tell me how to get my life back.

Finding the right treatment took time

Once I was diagnosed, I assumed the next step would be finding a treatment that worked.

It wasn't that simple.

I tried steroids and then different biologic treatments. The difficult part was that you couldn't always tell immediately whether something was working. You had to give it time, while still living with the symptoms and wondering whether you were moving in the right direction.

There were periods when I felt as though I was improving and others when it felt like I was going backwards.

The uncertainty was one of the hardest parts: is this the right treatment for me, or am I losing more time?

A flare affected much more than my gut

When my Crohn's was at its worst, it wasn't just pain.

The fatigue could be overwhelming. There were times when getting out of bed or going upstairs was difficult. School, exams, university applications, sport and seeing friends all had to be adjusted around what I was physically able to do.

When you're young, those are the things your life is supposed to be built around. Instead, I was constantly having to ask what my body would allow me to do.

My health wasn’t one part of my life. For a while, it determined how much of my life I could actually take part in.

Getting better was gradual

Eventually, I found treatment that made a real difference. But recovery wasn't a switch that suddenly flipped.

I had to add my life back in piece by piece. First I increased how much work I could manage. Then sport. Then I had to work out whether I could do both at the same time. Then came everything else, including having a social life again.

That process took a long time.

Recovery wasn’t just having fewer symptoms. It was being able to do more of the things that made me feel like myself again.

I still have to judge how far I can push myself

Today, I'm in a very different place. I can basically do everything I want to do, including university and high-level sport.

But there's still a conversation I have with myself that other people may not see. Can I physically handle this? Am I doing too much? Could this set me back?

My goal isn't to spend more time thinking about my condition. It's the opposite. I'd like to be able to put my hand up for something and just go for it, without always having to calculate what it might cost me physically.

Doing well doesn’t mean I’ve forgotten what it feels like to lose ground.

I don't want to track every symptom every day

One thing I've learned is that more tracking isn't automatically better for me.

I use data for sport, so I know how easy it is to become fixated on a single score or a bad day. I've found the same thing can happen with health. If I focus too much on every individual symptom, I can end up worrying about things that may not matter.

What matters more to me is the longer-term picture. Am I improving over weeks and months? Is something meaningfully changing? Is there a pattern worth paying attention to?

I want to understand the trend without having to live inside the data.

I want my condition to take up less space in my life

I've lived through a period when Crohn's dictated what I could do. I don't want to go back there.

For me, success is being able to study, train, see friends and make plans without my health being the first consideration every time.

I'm close to that now. But I also know that staying well doesn't mean pretending the condition isn't there.

It's about finding the balance between paying enough attention to recognise meaningful change and getting on with the rest of my life.

I don’t want managing Crohn’s to be the thing I’m best at. I want to be able to focus on everything else.

A note from mOI

When getting diagnosed is only the beginning

Ben spoke to us while mOI was still being developed. His experience reinforced that a diagnosis is not the end of the journey. mOI is designed to help people keep symptoms, results and health information together, understand change over time and bring a clearer picture into conversations about their care.

Understand your patterns →