Milestones of chronic illness and evolving identity

It’s a horrifying realisation that if my condition was a human being – it would be old enough to be in primary school.

For many, milestones such as a five-year anniversary stir various emotions, usually positive, and result in a whimsical look down memory lane. But when you are chronically ill, they can be horrifying. Hence, the aforementioned realisation.

I was struck by this realisation while preparing a reflection task for a careers talk at my university, and began to reflect on my relationship with my condition.

In May 2018, I was formally diagnosed with Crohn’s disease and spent the entire bank holiday weekend in a gastro ward watching fellow patients walk by with IVs and ports attached somewhere to their bodies from the little window of my hospital room.

Losing self-worth

Some milestones were met that year – I turned 18, stayed in a hospital and had an IV put in for the first time. But many weren’t.

I was too fatigued to pass my A levels and didn’t go to university with my friends. I couldn’t have my first foray into alcohol since I had no clue if my gut could handle anything other than my ‘safety foods’ – scrambled eggs and Heinz soup. I missed my first concert because I couldn’t make the trip to the venue, let alone sit down to watch the show.

When you can’t hit the typical milestones of young adulthood and don’t have the energy to engage in hobbies and social gatherings, you lose much of your identity and self-worth.

How we identify ourselves is linked with how much we can physically do and, in turn, how much energy we have. Think about it, hobbies require concentration and often physical activity, and socialising with friends requires paying attention and listening – all of these expend energy.

But what if you are too exhausted and can barely leave the house on your own? Does that mean I’m just my condition and nothing more?

For almost two years after my diagnosis, I struggled with my identity.

For almost two years after my diagnosis, I struggled with my identity – like many with chronic illness. We are no longer the same people we were before our symptoms began. Our lifestyles, our habits and our relationships with people change almost overnight. How we are perceived in society changes. Our priorities change, and our perspectives change with them.

I didn’t look, feel, or think like myself anymore. And that’s okay, actually.

Evolving identity

Maybe it was all the time alone attached to IVs or in hospital waiting rooms that gave me the perspective or time to reflect – but I concluded, like many of us at Kaleidoscope, that identity is never stagnant – it’s always evolving.

There will be things like our core values that never change, but the things that give joy, fulfilment and purpose do. They may originate from trying moments of growth, but when your identity doesn’t quite fit any more, it’s alright; you’ll find yourself again in something else.

For many of us with chronic illness, our identity is something we constantly confront, mourn and nurture. With the bit of energy we possess, we work to find ourselves again, whether through mindfulness, blogging or, in the case of my Perspectives project, art.

And yes, while milestones like this can be horrifying and a reminder of the never-ending nature of your ill health – it can also be a proud signifier of growth (as well as a cheesy look down memory lane). To you and others, a small part of your identity is your condition – but the rest is everything that brings you joy, connection and fulfilment regardless of the energy you do or don’t have.

There will be milestones you hit and some you miss or even hit later on. But that’s okay – you’re just taking the longer, and often more reflective, path to the finish line.

Find out more about our Low on Spoons, Not Identity art exhibition here.