I’m pretty much convinced I’ve suffered from Crohn’s Disease the majority of my life. While I wasn’t diagnosed until I was 26 years old; it was in receiving that eventual diagnosis that everything up to that point suddenly fell into place. All the illnesses I’d had since birth, all the moments growing up when I knew something was wrong and that my body wasn’t ‘normal’; all of those things had suddenly been granted an explanation. Ok it may not have been the one I was hoping for, but it was an explanation nevertheless. It almost instantly lifted a massive weight off my shoulders I’d never really known shouldn’t have been there.
For a time after my diagnosis, I wondered whether my life would have been easier had I not known I was ill. It was entirely infeasible of course, but it was nice to daydream and pretend it was possible to go back to being pre-disease ‘me’.
In fact it’s a suggestion I’ve heard someone ask a friend recently;
“What if you didn’t know anything was wrong, maybe you wouldn’t play on it so much”
Now, allow me to break that sentence down to its component parts, and, if I may, use myself as an example.
Certainly for me, the idea of ‘not knowing’ would have been impossible – I was in such unbearable pain that I couldn’t have simply ‘adapted’ to it. (And believe me I tried). I required medication, and surgery, long term treatment programs and education. None of that can simply be brushed under the proverbial carpet. I could have decided just to lie in agony day after day, quit my job and never stand upright again. Never eat, drink or sleep, never engage in sexual horse-play or dance to Abba for 3hrs straight. Obviously all of that would kill me – Abba are too hard to resist for a start and I’d surely die never hearing Chiquitita again. But then I’d have been giving up, accepting my illness and living in ignorance and fear, never seeing a doctor. Being STUPID.
In the aforementioned question alone, the word ‘wrong’ is used; meaning the poser of said q was aware that there is something intrinsically wrong with having a chronic illness. Right? So, as we are taught from a very young age, when something is wrong, we fix it. In the case of Crohn’s Disease and many other incurable illnesses, the experts and ourselves, can only work together to get so far in terms of ‘fixing’ our bodies. There is no cure, therefore there is no quick fix.
Finally, the idea that patients are ‘playing on’ their illnesses is utterly abhorrent to me. It is another nasty reminder that patients are predominantly maligned rather than supported by those outside of our close circles. Don’t get me wrong, I’m well aware there are those hypochondriacs with genuine illnesses too, those who demand attention, assume the worst expect us to praise their bravery in the face of adversity at every available opportunity; but thankfully in my experience they are few and far between. (I’ve shot most of them). The problem lies mainly in those outsiders who often refuse to accept the validity of an illness they can’t see. It’s easier that way to judge and abuse rather than educating yourself. This attitude of course does untold damage to the self-esteem and outlook of the sufferer they attack. It makes me so disheartened to know there is still such a gleeful lack of understanding all around us. How do patients begin to adapt to a life-changing event when they are made to feel ashamed of their own bodies?
So in conclusion, no, life wouldn’t be easier if we were unaware of our illness. It doesn’t allow us that privilege. It causes pain, sickness, weakness, and fatigue amongst many other gut-churning symptoms. Symptoms that are impossible to ignore.
Fear at speaking out about our illnesses will get us nowhere. The minute we accept something is wrong is the first step to putting it right. It may be embarrassing, and upsetting and everything in-between, but not half as difficult as how we’d feel down the line the longer we leave it.
Swallow your pride, take back the ownership of your body, and work towards a happier future. ‘Play on it’ for a while if you want; who cares? I for one wont judge. I got 5 packets of Jaffa Cakes and a barrel load of man hugs out of mine.
