GUEST POST: Please welcome Briar Lawry, Wellington writer and bookseller, invisible illness advocate, and voice in the Chrohns-Colitis community.
Recently, friends of mine were visiting Wellington for the weekend. I hadn’t seen them in a couple of years, except through my screen – before they returned to Auckland over the summer, they’d been in the Netherlands since well before I moved down-country. Sam and Annelies have known me since I was but a wee schoolgirl at my first bookstore job, and form part of an amazing group of friends that developed over my time at Whitcoulls. And as such, they know me, and my health history well.
They are both wonderfully caring and actively interested people. So when they came over to my place, it was only appropriate that after the story-swapping of life in new cities, we moved on to chat about how I’ve been tummy-wise since we saw each other.
I’ve always been quite open about my IBD – vocal, even. I’ve written about life with a colostomy at a young age, and I’ve spoken on national radio (literally – on Radio NZ National) about how Crohn’s and colitis affect both myself and the larger IBD-afflicted community.
The thing was, though, that this particular evening a flatmate’s brother was crashing at our place, and with said flatmate out and about, the brother latched himself onto our conversation and catch-up. A bit awkward, but we dealt with it.
It was only when conversation crossed into health-related topics where I got a little more riled up internally. Years of retail have trained me into a very good poker face.
‘How’re you doing, health-wise?’ Annelies asked (or words to that effect).
FW (Fourth Wheel) chortled. ‘You look pretty healthy to me!’
Cue awkward smiles and migration away from the topic. Yes, I might be pretty vocal about my situation with friends and online, but I’m not really down with yanking up my shirt to show off my laparotomy scars and explaining the intricacies of invisible illness to this dude chugging Coronas beside me.
This was a bit of a long-winded way of getting to my point – one that has been made by writers across the world and across the spectrum of illnesses:
Never, ever assume that a person is healthy because they don’t have any physical manifestations that you can see.
Yes, when I’m clothed and in company, I look pretty darn normal. Pink-cheeked, four limbs, certainly not frail or underweight. But when have those sort of things ever really been barometers for health?
Even the most uninformed people in NZ society are aware of diabetes, for example. The average diabetic will be, well, average looking.The average IBD patient is equally average. Some of us are underweight because our disease strikes our small bowel and we can’t absorb nutrients properly. Some of us are overweight because the diet that we can safely consume without physical pain and internal ulceration isn’t terribly nutritious – or because we’ve been on a course of steroids for months and the puff just keeps on coming. On the street, we’re just one of you, going about our business, because that’s what you have to do when you have a chronic illness – you get on with things, as much as you can, whenever you can.
I wonder if FW would be saying ‘You look pretty healthy to me!’ if he saw the cupboard I used to have that was brimming with colostomy supplies. Or if he went to grab another beer from the fridge and saw my Humira pens nestled between the maple syrup and the kewpie mayonnaise. Or if I had, as I was a little tempted to, shown off my wicked scars, which are still red and raised and some of which still require biweekly nurse visits, some two months out of surgery.
It’s difficult, trying to advocate for yourself and for others when you’re simultaneously terribly unwell and look ‘just fine’.
People often comment on how peppy I am, all things considered. For me, it’s the only way forward – but it also can make it more difficult for people to understand the true depth of what you’re experiencing.
It can be quite a shock for someone to hear the words ‘colostomy’ and ‘bowel perforation’ delivered with a laugh. And the words themselves don’t really convey the experience – only providing some unknowable sense of severity. So here comes the slightly gory part of this piece. Squeamish people may want to stop here – but to be honest, I urge you not to. Because learning about the experiences of others can only help people become more understanding of the dark underbelly of ‘gross’ illnesses.
So. IBD. Inflammatory Bowel Disease. Not to be confused with IBS/Irritable Bowel Syndrome. IBS sucks, I don’t deny that whatsoever. But IBD is an autoimmune disease, comparable in many ways to things like rheumatoid arthritis and ankylosing spondylitis. It can affect anywhere in the immune system, from the very start (mouth) to the very end (the very first and last time I will say butt in this article). And what it can do in there varies hugely.
At my worst, I would be writhing in pain in bed – when I wasn’t running to the bathroom, hoping that I would make it in time. I would be two minutes into the ten minute walk to the bus, and out of nowhere would come the two unhappy strikes of pain and urgency. Painkillers (the prescription kind) might ease things a little – but pain is just a symptom of something else being very, very wrong.
When I popped tramadol on the daily, it wouldn’t necessarily cut through the pain, but it would make me feel a little less bothered by it. Sometimes that’s all you can hope for.
It’s hard to imagine. I couldn’t imagine it, until it happened to me.
I am 24. I started having what I now know to be IBD symptoms when I was about 17 or 18. I was diagnosed with ulcerative colitis at 20 and re-diagnosed with Crohn’s disease at 23, when I had surgery to take out 15cm of large intestine and a colostomy created. My emergency surgery late last year resulted in the ostomy being reversed – but it was a part of my life for nearly a year and a half. Something that wasn’t ideal, but that saved my life. Made me able to function like a normal human being – a regular 24 year girl about town, who just happened to do things a little differently.
The reality is that right now, I’m probably the healthiest I’ve been in years. But that has taken effort on my part, and that of my medical and surgical teams. I inject a drug every week that is painful, but effective. I take pills every night. I watch out for foods that might make me worse. I listen to my body, and I advocate for it, and for myself.
And that combination means that invisible illnesses can both become seen – and overcome. To the best of our abilities.
– Briar Lawry is a writer and bookseller based in Wellington. She also dedicates time and spoons to dealing with Crohn’s disease, and works with Crohn’s & Colitis NZ to help the IBD community and to raise awareness.