Much is made of Crohn’s being a ‘toilet-centric’ disease. When described in the press, the focus is primarily on bowels and what goes in and out of them — which is understandable, as many patients with IBD do find their symptoms stem from unusual bathroom… activity.
However, all the light shone in our rear ends takes focus away from the countless other, often more devastating symptoms attached to chronic illness: joint pains, extreme fatigue, and the often atrocious mental health, to name but a few.
For me, the discovery that my head — as well as my body — might be affected by my disease was one I’ve made all by myself. No doctors told me I’d suffer from depression. Or that my moods would be so changeable. No nurses told me there’d be days when I’d struggle to get out of bed. These little joys have been like opening a Easter Egg to find it empty. A Christmas stocking filled with coal. A fridge without cheese. You get the general idea.
The decline in my mental health has been steady from the moment I first felt a twinge and knew it was more than just trapped wind. Every day I’m aware of the fact that I have this disease. My body simply won’t allow me to forget it.
But some days, more often than I’d like, I KNOW I have Crohn’s. It hits like a bolt from the blue and I am utterly floored by it.
These days are often completely unexpected and without reason. In these moments the stark realisation that I am never getting better is almost too much to bear, and I feel overwhelmed. Feelings of hopelessness are generally not amongst the symptoms described when you’re diagnosed. I can see why; doctors probably don’t want to induce mass suicide amongst their patients. Far too much mess and paperwork for starters.
That aside, in some sadistic way I like the light and dark of life with chronic illness; those feelings of relief and achievement in coming through a bad patch. I’m 99% sure I wouldn’t say the same when wallowing in Crohn’s-induced misery, or having my colon investigated, but I try to appreciate happiness when it lingers around a while.
Mostly I have a positive outlook on life with my disease. I try to make the best of a bad situation. I don’t see any alternative; what would my 65-year-old self make of me lying down to a life of pain and unhappiness on her death-bed? (I’m Scottish so if I live to 65 I’ll be delighted; all that deep-fried-whisky-flavoured-heroin has taken its toll).
Unlike Crohn’s, these blue moods of mine are temporary. They’re an established part of my illness and like The Terminator, they’ll be back. It’s been a long road since Crohn’s entered my life without invitation and I’ve found myself surprised at just how much I’ve subsequently changed as a person.
This isn’t entirely a bad thing; alongside the negative impact the disease has had on my life I’ve also found reserves of strength and courage that I’d never assumed I’d possessed. I’ve found immense empathy for others, where I’d previously had a default disdain-setting on my face 24/7. I’ve accepted my condition as much as anyone can, but I’m still well aware it will hit me brick hard in the face from time to time. That’s not something I look forward to of course, but I don’t spend my life waiting for it either.
This is the part of Crohn’s Disease and many other chronic illnesses that for the most part goes unspoken. Not by me. I’m not ashamed of these feelings. That doesn’t mean to say they don’t antagonise and frustrate me; they do, incredibly so.
I live my life to the fullest when I have the physical and mental capacity to do so, and I try not to be too hard on myself when I don’t. I know that talking about my feelings is never my failing.
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