“Now I Was Fearful Even Talking About Crohn’s…”


(This is a guest post from Kathleen, who blogs at Crohnological Order. You can follow Kath on Twitter or like her page on Facebook. She lives in Scotland.)

Shortly following my diagnosis with Crohn’s, after learning little more than the basics from medical professionals, I dipped my diseased toe into researching online. I was nearly overwhelmed, but also dismayed to find almost every aspect of IBD portrayed under a massive cloud of negativity.

I visited forums which professed I would surely die, and how AWFUL my future would be if — by some minor miracle — I managed to grasp my bony hand around some semblance of a life. It was already scary enough coming to terms with not getting physically ‘better’, now I was fearful even talking about Crohn’s, too. Mainly because OMG IT’S TERRIFYING?! — and because there can be such unparalleled jealousy and competitiveness in the medical-world.

I’ve never understood the need to ‘compete’ with your fellow invalids. What does it achieve? This strange culture of ‘competitive suffering’, whereby patients seem inclined to outdo one another with bigger and better scars, tales of more traumatic ops or fewer bits of their insides is such school-yard behaviour it’s almost embarrassing.

I wholly appreciate that this negativity towards your illness is a part of life; it’s not a positive situation to find yourself in, so the natural reaction is to whine and bitch about how terrible the hand you’ve been dealt is.

But as a more experienced patient, I would gently advise using caution when audibly bashing certain aspects of your disease. Doctors, treatments, medications and symptoms may all be completely alien to new patients. Don’t tell them how horrific your experience is when they are already terrified. Bear in mind — even while your bad experience is at the forefront of your mind — not to pummel their experience into insignificance.

Yes, I would certainly say my own blog isn’t filled with endless joy, and I don’t spend my life with Crohn’s Disease skipping through forests with robin redbreasts whistling on my shoulder. But when I write I try to think of what I, as a patient, would want to read. I consider what words might aid my understanding of my disease and help me cope. What might help make someone like me feel less alone?

For starters, I want to feel that I am in positive company. I want to hear practical advice on how to cope with a chronic illness day to day. I want to feel my deepest fears are not singular nor embarrassing. I want to be able to see the good in my life, and try not to blame everything on my illness.

It’s true — of course — that there will always be those who love to wallow in the abject misery of their lives and constantly gripe about anything and everything. There are those people who seemingly choose to be unhappy — but I can’t go for that.

I want to try my absolute utmost to live happily despite my illness. I want to be able to express my pain without fear that I am going to be patronised or told how to behave. I don’t expect that behaviour from outsiders, so I wouldn’t wish those feelings on someone else.

My pain is not the same as Mrs. Smith in Bed 5. So I try not to tell her how to feel. Just because I’m not complaining (and don’t get me wrong: I DO) does not mean I should tell her not to.

I don’t need to give myself a gold star and a lollipop as a reward either – life is hard enough without us competing against one another in the Pain Olympics.

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