"You're being dramatic"
I was diagnosed with Colitis in January 2018, just before my 25th birthday. I had been suffering from the symptoms since my mid-teens. For almost a decade I had been told by doctors that what I was going through; the pain, the excess toilet time, the fatigue, the food issues, the bloating - all of it was merely a case of IBS. That most people had it to an extent, and that I had nothing to worry about.
With each doctor’s appointment the unspoken words “you’re being dramatic”, rang in my ears. I felt stupid. Like I was making up how bad I felt. Perhaps I was? The doctors said there was nothing wrong with me. They’d taken blood samples and everything. Could it be that I was just sensationalising the whole thing? Being over the top when the waves of nausea threatened to make me faint? Or putting on theatrics when I suddenly had to run, mid conversation, to the nearest toilet? Was my exhaustion just laziness? Maybe it was all in my head.
Being diagnosed, whilst a little scary, was one of the biggest reliefs of my life. I wasn’t making it up. These symptoms, which seemed to be barely there one minute, then crippling me the next, were real. I had a genuine condition. A disease, in fact. Something that I could point at and say “That! I have that, and it is the reason I feel this way!” It was freeing to know that I had the validation of an official diagnosis to back me up. For a while.
“Oh, bowel disease? Yeah, I have IBS, I know exactly how you feel!”
The amount of people who, even after I was given this life sentence of an illness, still seemed to think that there’s nothing ‘really’ wrong with me, was a shock. Don’t get me wrong, some people, some of my nearest and dearest, really got it. They understood that Colitis is a real and significant thing, and that living with it would require some changes in behaviour and attitude from me, and a little from them. But too often I felt like my disease wasn’t ENOUGH.
Despite the handful of pills I was now throwing back each day, and the Can’t Wait Card tucked in my wallet, it wasn’t a terrible enough diagnosis to be considered an actual problem by most of the people I talked to about it.
“Colitis? Yeah, I know someone with a stoma bag. Do YOU have a stoma bag?”
No. No, I don’t have a bag. I don’t have a bag, nor do I have any scars from surgery or experiences of enemas or any treatment that could be considered significantly difficult to deal with. I have to take several fairly large tablets every day, and be careful about what I eat and drink. At this stage, that’s all. That’s my treatment. Looking at all of the wonderful and strong sufferers of Crohn’s and Colitis who have been through so much more than I makes me feel two very different ways...
The first is inspired. Those people let me know that even if my condition does get worse, I will be okay, life will go on and I don’t need to be afraid. The second thing I feel, I am somewhat ashamed of. They make me feel insignificant. Like my experience, my story, is meaningless. These people have been through some really awful times, and I’ve heard first hand horror stories that my worst days can’t hold a candle to. I feel like I’m not ‘ill enough’ to count. This is of course, rubbish!
When I first saw the ‘Not Every Disability is Visible’ campaign, it spoke to me on a level that nothing else had before. It made me realise that just because others couldn’t see the horrible effects of what I’m going through, doesn’t mean I’m not going through them. That just because my problems weren’t as severe as others, doesn’t mean they still aren’t significant and a burden.
It gave me the courage to, when desperate on a busy train and facing a 7 person queue for the toilet, go further down the carriage to use the disabled loo for the first time. I had my Can’t Wait card to back me up, but more importantly, I knew it was necessary. I knew that just because others might not be able to see it, I had just as much right to use that toilet as a person in a wheelchair.
Ellie Jordan
Living with Ulcerative Colitis
There are still times where I feel the guilt of being an imposter. With my relatively healthy looking body, it’s easy for people, even myself, to dismiss what might be happening inside. But I do feel that things are improving. Everything from inflammatory bowel diseases, to mental health issues, to endometriosis, are ailments that are being talked about more. Are being accepted more. Treated with both more seriousness and less stigma. I hope that this momentum continues. Everybody deserves to feel that whatever they are going through matters, whether it’s visible or not.
Thanks to @captainellie for sharing her story and using her voice to show that Not Every Disability is Visible.
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