It was almost certainly me who you saw in the little Sussex seaside town. I did indeed leap out of my mobility scooter, sort of run into the shop and rush out again with a bag of shopping.
The title refers to a complaint I read recently in a community Facebook page. I didn’t address it then. I still get embarrassed about my bowel incontinence. Who wouldn’t? Inspired by Sam Cleasby’s (www.sobadass.me) blogging to raise awareness of IBD and her hashtag #stoppoobeingtaboo I am responding now.
It probably was me who you saw. I leaped out of my mobility scooter, sort of ran into the shop and came rushing out again laden with vegetables and health foods.
I have Inflammatory Bowel Disease and am currently highly symptomatic. After reading your post I stayed in bed for a week, believing I don’t deserve a life and that it’s just too risky to get up.
When I am flaring, in addition to the fatigue, joint pain, acute stomach pain, eye pain and needing the loo every hour, I have bowel incontinence. At the beginning and end of a flare I can just about control this if I remain seated. So I thought I’d sit, on my mobility scooter, ride it to town and buy some essentials. I had to rush into the shop, despite pain and fatigue, or I may have had an accident.
I had to think hard about whether I was well enough to go out. I have to push myself sometimes to see how I am. Sometimes, by making the extra effort, I realise I’m going into remission. Lately I’m more likely to realise I wasn’t really quite well enough to go out. But I have to try.
I have auto immune diseases; my body is fighting itself, I am full of my own judgements over whether I should just hide or not, whether I can honestly go back to a job which my health will continue to sabotage or whether I can justify (and afford to live on) state benefits.
I look fine. And I’m proud so I present as fine. It’s hard for me to even admit to the medical profession how bad things are so I’m certainly not going to go out looking like a victim. I’m already so embarrassed by the scooter that I barely use it. So, when I’m not housebound by incontinence and pain, I’m housebound by shame.
Judgement has not been helpful. I would ask everyone, from the disabled toilet queue, to the blue badge parking spaces, from the priority seats on the train to, well, just everywhere to stop this negative judging. I’m a positive person generally but sometimes, other peoples’ projections can make it difficult to maintain that outlook.
We are hard enough on ourselves, let’s work on that and not assume that everyone else is somehow on the make.
Do you really think I want to be in a mobility scooter?
Starring Role in YOUR own Life 
