On world IBD day (try saying that after a gin) I guess the main thing is to be visible about invisible illness. But also, a pretty taboo one. Really all invisible/chronic illness is terrible, but I couldn’t have got a slightly more socially acceptable one instead of the literal shit one?
Anyway for the record this is what someone with IBD looks like...
Pretty normal (aside from my hair)
And here's me when I was first diagnosed...
Also the one nobody has heard of. Crohns, sure lads we know that one. Famous people have that one. Oh and it makes you skinny right too?
Sigh.
Or ‘oh I get IBD if I eat too many carbs/dairy/sugar/fried chicken’
No, that’s not the same thing. Firstly IBS and IBD are totally different. And indigestion or food intolerance is neither of those. My body has decided to attack itself from the inside and picked my colon as its weapon of choice. Which is ya know, fun.
So no, I got Ulcerative Colitis, which is ‘sorta like Crohns but not’. And no, you don’t HAVE to be skinny to have them. Sorry to disappoint but no I (thankfully) never (so far) got ill enough to be super skinny. But I do love the idea that I must be lying about it, or it can’t be that bad because I’ve still got massive thighs…I still spent quite a lot of time going to the toilet into double figures, and yes that involved quite a lot of liquid and blood. Told you it was gross. And scary as fuck when you don’t know what’s going on. Which is most of us, for quite a long time.
My diagnosis was…a shit show. Pardon the pun. The thing is that they have to let you get really sick before they’ll concede there’s something wrong. Even when all the signs point to IBD…you have to stick out 6 months of peppermint tablets and ‘are you sure’ first. In fairness to the nurse who prescribed them she actually apologised saying she knew they wouldn’t work, but she had to ‘prove’ we’d tried before we could proceed with referring me to a hospital. The NHS is a wonderful thing if you’re actually dying…not when you’re trying to get a diagnosis. I was lucky, to be fair I didn’t get so sick it was really dangerous before a diagnosis, which I know is better than some people get.
I have a suitably ‘theatrical’ story about my diagnosis, that’s funny now I look back. I’d gone for what was the ‘final’ diagnosis appointment at the hospital that included a barrage of tests, and the day after I’d hopped down to London for work, and to watch for the final time Punchdrunk’s ‘The Drowned Man’. I’d gone off for lunch with a friend between things and not looked at my phone…I got back to a very confusing message from my Doctor that essentially seemed to say ‘come back to the hospital’…well now it was 3pm and obviously I was miles away…my Mum and I were frantically calling the secretary (and of course he’d left no note)…who equally was confused. At this point I was quite ill, and quite scared already. I ended up sobbing in Paddington station, to the point a woman walked past, then doubled back with a tissue. My memory of that Punchdrunk show is that of both being stuck in the toilet for IBD reasons (not ideal in a run-around-a-huge-building show) and sobbing in a toilet because I was so scared.
And I tell that story because on the outside that day. Sobbing in Paddington station aside, I looked fine. My friend I had lunch with had no idea. My friends I stood in line with for the show, and hugged goodbye after, had no idea. Anyone in the show would have seen another masked audience member wandering about, looking like everyone else…and weirdly that seems a really good metaphor.
Because most of the time everything looks normal. Whatever normal is. And in the scheme of things, I’ve not done too badly.
But what nobody sees is the not-normal days…mostly I’m able to hide them. But you don’t see the doubled up in pain moments, the rushing to the toilet however many times a day. The doing mental gymnastics over ‘is this bad enough to ring the hospital or do I sit it out’. You don’t see the runs and workouts cut short running to the loo…or doubled up in pain. You don’t see the days where I’m so fatigued, I can’t even get out on a run or a workout. (I’m endlessly amused I never manage to work out its IBD fatigue until after its over). The monthly PMS/Period making ALL of it worse (thanks being a woman etc). The ‘is this some weird new side effect of the drugs’ and ‘hmm can I not eat this thing now or was that coincidence’ a million and one tiny things a day that sometimes add up to exhaustion.
Then there’s the ‘looking forward’ in life and the endless questions. I’m pretty damn pragmatic, and with a fairly vocal online community I’m not especially scared of the future. For me it goes one of about 3 ways….
1. Plodding on with average amounts of medication, and the odd mild and odd really bad flare up.
2. Increasingly bad flare ups, heavier and heavier bouts of medication and hospitalisation periodically.
3. Surgery and probably a stoma bag.
All those are discounting the rarer, but possible scenarios of ‘sudden severe flare-up’ ‘sudden severe issues in the bowel and emergency surgery’ and yes, the real possibility that the outcome of any of that would be not surviving it. Thankfully that’s rare. As is an increased risk of cancer, but it’s there for both those. And I don’t dwell on it. But also it’s not a set of things I planned on reflecting on at 29 when I was diagnosed.
But around all the physical health stuff that I can quite honestly cope with mostly. I take my medicine like a good girl (mostly, I do still forget) I subject myself to procedures when they say so, I’ve had more blood taken than a vampire…I’ve even got over most of my fear of hospitals. But the mental health impact is often neglected.
All the above, the facing that lot at 29. The being scared out of your mind by Doctors. The ‘what ifs’ it’s all an adjustment. I (shameless plug) wrote a play about the impact of chronic illness diagnosis. Different illnesses, similar mental health impacts. (you can watch it here)
Because you know what gets me, not the ‘will I get ill again’ it’s the ‘will this mean I’m alone?’ in a romantic way, sure but also in an isolated by illness way. Because we often are. For friends who might not understand why I’m bailing- if we’re acquaintances I’m hardly going to text with ‘Sorry I can’t come I’m literally shitting blood 20 times a day’ (lord I wish that was an exaggeration). Or ‘I can’t come there because I don’t know what the bathroom situation will be’ or ‘I am just so bone-tired I can’t actually get up and I’ve been that way for 2 days now’ or ‘I’m just in pain’…Even for close friends, it’s a really hard thing to say. In fact, I’ve never said it. But all those times I cancel, you bet that half of them are my IBD working flawlessly in tandem with my anxiety (or you know I’m just stuck in the loo).
But add to that, another taboo…romantic relationship. These, my friends, are not a romantic disease. I think it’s different if you’ve got a partner going into it, they should if they’re worth their salt, accept it. And if not, show them the door. But I look at all of it, all the possibilities above and I wonder ‘who would want this’ I mean who would sign up for all that? And also, for me, it’s a really hard thing to show someone the reality of it, the vulnerable nature of it. One thing, to make jokes about shitting the bed in a blog post…quite another to explain to someone it might actually happen.
Or what about work? Life in my industry is precarious enough, without the possibility you won’t be able to work…be that freelance or that an employer will be a little bit of a shit and not renew your contract because you missed one too many things…all of this bubbles away inside…
On the outside I might not have looked ill...but the physical and mental toll is still there. And we shouldn't be embarrassed to talk about either.
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