In many respects I appear to be, as O am, highly privileged. I’m white, cisgendered, privately educated, and I’m in a stable mixed-gender relationship. But there are two ways I’m not privileged. I’m bisexual, which is awesome but frustrating. And then there’s the subject of this post: I have a chronic debilitating illness. I’ve had it all my adult life, and I still don’t know what it is. It’s been classed as Irritable Bowel Syndrome, which is a diagnosis of exclusion – in other words, they’ve ruled out lots of things, and slapped a descriptive label on what’s left. No-one has proposed any sort of causal mechanism for my symptoms, which are now mostly worse than ever. I discovered the most effective drug for symptomatic relief myself, quite by accident.
The symptoms are invisible and unpleasant: wildly variable gut function and dysfunction, shooting muscle pains, and near-perpetual exhaustion. The gut trouble is extremely uncomfortable, socially embarassing, and makes me very worried about my attractiveness. (As far as I know it’s very rarely even noticeable to others, but I can’t escape the self-consciousness.) The tiredness hampers me in my professional work and my domestic tasks including childcare. It’s much more debilitating, day by day, than my intermittent poor mental health. And it never gets any better.
My previous employer sent me to see Occupational Health, just as my current employers are about to. This is supposed to be a form of support, but it serves mainly to make one feel guilty for being ill, as though being incapacitated was a matter of volition. The previous Occupational Health doctor required me to trek up to Harley Street to be told that it wasn’t IBS (without any tests to check this). He also flatly informed me that my condition could not be regarded as a disability in law, despite the Disability Discrimination Act (now the Equalities Act) saying so in black and white. That meant his official advice to my employers was that they didn’t have to do a damn thing to help me manage my condition. I’m very much afraid the same is about to happen again.
I’m a union member, which has helped me in the past. I’d recommend union membership to almost anyone. The simple fact of being a prominent trades unionist was excellent leverage for getting small adjustments made. But my current employer does not recognise any unions. It has a ridiculous sockpuppet entity that it calls a staff consultation group, but it’s independent of management in the same way the Press Complaints Commission is independent of newspaper editors. And my illness means I can’t muster the energy to organise a union branch from scratch myself. And thanks to legal aid cuts, I couldn’t afford to take my employers to an employment tribunal if I needed to.
The side-effects suck too. I have a fairly substantial appetite, but eating only barely keeps me going. I find it a tremendous struggle to keep my weight above ‘underweight’ for my height. One day a fortnight ago I was so hungry I ate five meals, and still suffered a fainting fit that evening. Anyone who thinks it’s wonderful that I can eat what I want and not gain weight will be lucky to escape as the recipient of merely a hard stare. Similarly, the effects of my illness on my private life and inhibitions are at least as profound as the effect of five years of Catholic high school.
Next month I go to see a gastroenterologist to try and refine my diagnosis. (Thanks, NHS!) But knowledge won’t make me less disabled, just as passing that knowledge on to others won’t automatically make them stop making my life difficult. Having an invisible disability sucks, and there’s no support charity for diseases that have no name. I’m lucky that my many forms of privilege give me opportunities to fight back, but they don’t make it OK. It may very well never be OK.