A couple of weeks ago I wrote a guest post for Sarah Wilson’s Writehanded website. It’s an excellent blog about important health and advocacy issues, and it was wonderful to be included.
Here’s a snippet:
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.
I also have a couple of pieces in the latest NZ Musician magazine – I’ll link to ’em when they go up online.
In the meantime, here’s a new picture of my face.