It’s difficult beyond belief being told how ‘well’ I look when the battle I'm fighting is raging inside

Trying to find normality amongst multiple chronic illnesses.
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Little did I know how much I should have appreciated being healthy the first 17 years of my life. Looking back now, I probably did fall ill more often than my friends but at the time I thought nothing of it. It must’ve been something I’d eaten, I was probably overtired, or maybe picked up a bug that was going around. Never did I think I’d have a life sentence of numerous chronic illnesses associated with my name, and be inundated with hospital appointments, admissions, and procedures. How could I possibly adjust? I doubted my ability to remember what ‘normal’ felt like.

Do you have any existing health conditions? Up until 2013, that answer was no for me but now I reel off my list: Crohn’s disease, Ehlers-Danlos Syndrome, Gastroparesis, Postural Tachycardia Syndrome. Four conditions I hadn't even heard of! 

I am what someone with an invisible illness looks like.

Ehlers Danlos Syndrome (EDS), my primary diagnosis, is a connective tissue disorder. The syndromes have recently been re-classified and 13 different types identified; my diagnosis is Hypermobile Ehlers-Danlos Syndrome or hEDS.

EDS manifests itself very differently in each individual. In my case, I struggle with most of my joints dislocating and subluxating on a daily basis. My bowel doesn’t work so I carry out irrigation. My bladder doesn’t work so I have to self-catheterize.

My first major medical event was having ileostomy surgery in April 2018. Living with Stewie (my stoma) has been huge to get my head around and to adapt to, but it’s something I had to do and has meant that I no longer have to irrigate. EDS, like many other chronic illnesses, is extremely cruel and has stripped me of all normality — things that I would have otherwise taken for granted.

Claustrophobia; I felt trapped in the words. My life dictated by illness.

At 20 years old I imagined myself at university, travelling and exploring what the world had to offer but instead I’m taking in excess of thirty tablets a day, having to catheterise myself just to be able to wee, having more foods that I can’t tolerate than I can, all while dealing with frequent hospital admissions, appointments, and procedures.

However, in a life dealing with multiple chronic illnesses and their implications, it’s so important to focus on the positives — of which there are many that often go unnoticed. Whilst I’ve lost some people this year, I’ve gained others who already have such a significant place in my life. I’m so fortunate to have such an amazing support network, and I wouldn’t be able to get through this without them.

Last year has been far from easy, but no matter what’s happened I’ve come out the other side and that is something I truly am so very grateful for.