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Seren Kiremitcioglu โ€ข 2 June 2019 โ€ข 4 minutes

๐Ÿง—โ€โ™€๏ธ #SpoonieSeren: A Disability Identity Crisis ๐Ÿง—โ€โ™€๏ธ

When you get diagnosed with an illness, it can change the perception you have of yourself and the world around you. For example, gaining a disability illustrated to me how inaccessible the world can be – restaurants having their toilets up narrow stairs, people not recognising the need for ‘invisible illness’ patients to have blue badges and access to disabled toilets, etc. When you’re at a disadvantage, you realise that the world around you isn’t always thought of with you in mind.

a picture of me in the Blue Lagoon in Iceland, before my illness

The change illness brings

Pre-diagnosis, it was easy for me to navigate the world. I felt like a different person – limited only by my mental illness, I could drink, travel at a moment’s notice, go sailing, walk around town, and live an active lifestyle.

But when my vasculitis rendered my lungs redundant, I was barely able to walk through the house, let alone from place to place. Sometimes I’d have to crawl up the stairs, other times I’d be breathless turning over in bed. Being on steroids and unable to move, I gained weight and felt excruciating pain every time I moved my legs. Long gone were my days of traveling, sailing, and generally having fun.

a picture of me during my illness

Losing your identity

It felt as if my freedom had been snatched overnight and all essence of myself had been lost. I was just a husk.

A lovely guy I met in Turkey, Seรกn McKiernan, speaks of his experience of this in his blog ‘Growing Pains – My Year of Illness Changed Me’. Reading this really inspired me to speak up. It reminded me of the huge issues I experienced in regards to my identity.

Struggling to do the things I once enjoyed, I wasn’t sure where I stood. Who am I? What do I enjoy? I used to be traveller, sailor, adventurer. Over the past couple of years, I’ve had to figure out how to recreate myself – and it’s been a huge learning experience. I have been sad and have felt empty, but I’ve also built resilience and self-confidence.

a photo of me on holiday - i'm floating across a lilo, smiling at the camera with sunglasses on. it's sunny and i'm in the ocean surrounded by cliffs

The questions I asked myself

Honestly, it’s tremendously difficult when your life changes like this at such a young age. For example, my peers are generally partying, travelling, and living fairly limitless lives, whereas I do have an illness-related cap on things. I don’t really go on nights out, and travelling anywhere new – even in the UK – is a huge mission for me.

Sometimes I think, ‘am I living my best life? Am I squandering my youth?’ But the reality is, I’m not. I’m very much career-oriented. Building a career is what’s always been important to me, and I am really happy with my life now. I have gained new interests, realised what it is I love to do and focus on things that empower me. But it’s always going to be natural to wonder if I should be partying like a quintessential 20-something-year-old.

The great thing is that my illness has enabled me to realise that life is precious, and shown me what I really like doing. In the past few months I’ve been able to begin exercising in new ways by doing something I’ve never done before – bouldering. I’m incredibly slow to learn and progress, and I really didn’t think it would be for me, but it makes me happy and has changed my thought processes.

me climbing on a climbing wall, in a t-shirt with Mind's logo on it

Trials and tribulations: nothing is straight forward with illness

It wasn’t all smiles. In the beginning, I used to get angry and think, why am I so bad at this? Why is everyone progressing so much quicker than I am? I’d get in such dark moods, but then I remembered that I’m strong for even being there and trying to better myself.

I realigned my thoughts, no longer focussing on completing a climb and progressing through the levels, but prioritising the actual act of climbing and the liberating feeling of being able to move my body. If I don’t get all the way to the top, it doesn’t matter – as long as I tried and got up some part of it, that’s what counts. It not only improves my physical fitness, but it really is mentally beneficial too.

Recreating my self-image

My identity has very much been vasculitis first, everything else second. But I’m changing it around. I’m a writer, a creative, a girlfriend, a best friend, a climber. I care about people and I try my best. And really, who doesn’t have an identity crisis in their twenties!?

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