I’ve been particularly poorly in the last few weeks; my disease has been well and truly kicking my backside, in more ways than one. I’ve noticed in this period of relentless illness that the comments and helpful ‘suggestions’ from outsiders seem to have increased tenfold.
So in order to establish whether or not I am just particularly crabbit (=irritable for non-Scots), or if people really do weigh in on my IBD as much as it seems, I undertook a silent experiment. I noted, physically and mentally, everything someone said in relation to my illness that rubbed me up the wrong way. No, it didn’t serve to make me feel any better, but it did amaze me as to how regularly I tolerate this nonsense and still don’t have a criminal record.
When advising I’ve lost weight in the past few days, a colleague;
“I’d love to lose weight that easily!” closely followed up with “It must be great to be so skinny..”
I don’t think I need to say too much about how unbelievably insulting that is to someone with a chronic illness. It may not appear rude to the untrained (or should that be un-diseased) eye, however if anyone has as much as an inkling of knowledge on Crohn’s Disease and IBD, you will know that losing weight ISN’T a positive. It’s yet another scary sign things are getting worse. At my worst I’d dropped 4 dress sizes and 5 bra sizes and was a horrifically skeletal version of my former self. I was doing everything in my power not to be photographed beside trees for fear or becoming invisible. Scrap that, I was doing everything in my power not to be photographed at all.
Involved in an online discussion with a fellow IBD patient, who advised me that my blog is;
“..misleading, as it implies we can’t get cured”
HELLO? I may have missed that almighty bombshell whist vomiting or on the toilet AGAIN, but Crohn’s is still currently INCUREABLE. Therefore I’m not actually implying anything; simply stating a fact. My blog is a diary of sorts of MY personal experience in living day to day with the disease, not a journalistic attempt at filling peoples’ already vulnerable heads with false hope and incoherent theories. To imply I don’t want to be cured is unbearably ridiculous, and if you had taken more than 5minutes to actually read my posts, you would know I don’t enjoy this disease. I despise it.
Above said daftie, then posts a passive aggressive tweet aimed clearly at me for having a difference of opinion and promptly deletes it through cowardice when I have the gall to reply. YAWN. It’s incredibly depressing when people who profess to suffer from the same illness as you then backbite simply because we don’t have the same attitude. Chronic illness can already be an incredibly isolating situation to find yourself in, so adding to those feelings through what can only be vanity or insecurity at how you truly feel, is distinctly unhelpful. I talk openly about how Crohn’s affects my mental health, relationships, bowels; I’m not ashamed of being sad or angry or afraid, I’m not frightened of being realistic about how IBD affects my life – it’s empowering for me to be open about it. I won’t ever be made to feel that is wrong, by anyone’s standards.
Stranger tells me to “eat something hen, what’s wrong with you?!” when I’m sitting alone in a café nibbling on a slice of lemon loaf.
Colleague tells me to “try eating less bread”
Colleague tells me to “try eating more nuts, I read it in Glamour magazine”
Colleague says “you’re still ill..?”
I lose the w(ill) to live.
Friend texts to tell me they read about “aloe-vera being a cure” adding “it’s probably bullshit though…”
Stranger at hospital tells me that “Coconut Water will sort you out, I read that, there are loads of supplements you can take as well” and that “Crohn’s is the same as IBS, you’d disagree but I have IBS I know what you’re going through”
I internally scream until my lungs fail.
When looking back over this few days it’s disappointing to see that this is pretty much an accurate example of everyday; nothing out of the ordinary here. Everyone and their wife/ husband/ lover/ cats have an opinion on my disease and there’s little to nothing I can do about it. Grin and bear it? Or grimace and gently correct everyone without IBD? I’ll be sticking to the latter, when I have the energy to do so. And if I want to eat half a piece of lemon loaf because that all my dodgy insides will tolerate, then I’ll do it. And generously choke you to death with the other half.