Something chronic

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.



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3 responses to “Something chronic

  1. lucyinldn

    Your condition sounds familiar. All the women in my family have a very high metabolism and only since I hit 40 have l managed to maintain a wheight above 8stone. Sadly, l have also now been diagnosed with IBD, Ulcerative Colitis as well as IBS. For about a year now, I’ve had to stop eating wheat as any attempt to eat it results in cramping. I also suffer from migraines and this gave me a clue as to the need for high calorie intake and low wheight gain. I have trouble absorbing pain killers, I think I may also have problems absorbing nutrients in food. This would explain, like you, low energy or a sudden dramatic drop in energy levels. This sometimes manifests as shaking, disorientation and feeling feint – eating a banana seems to be a good way out if that.
    Other than that, it just has to be managed. Lots of sleep. Being strict about eating and snacking inbetween meals is vital. 5 times a dsy is about right. Fluoxitine is a good iron and vitimin tonic that I sometimes use and keeping zinc levels topped up helps maintain mental health. I’d be interested to hear how you get on as I’ve reconciled myself to the fact that I have to self manage my symptoms, but I appreciate that it may not be possible in your case. I wish you luck.

  2. Mark

    I’m hoping that you get comment-notifications for this site. And maybe you remember me: Mark, from Edinburgh. Though I used to go by a different moniker. I’ve been looking for you recently. I wrote you an email, but it came back undeliverable. So, I returned to the site we both used to write on, only to find I was far too late and you had gone. 😦
    A bit of sleuthing found this. It seems you have a mixed bag, from the posts I’ve seen. Life can be very hard: the last six years turned into my own little private hell. So, I hope when life treats you well it treats you very well indeed, and when times are tough you can somehow muddle through. “This, too, shall pass.”
    If you get this, but don’t want to get in touch, maybe just write a note saying so, so I stop looking! I miss your company, and am horribly ashamed of my absence. You were always right, “Noders rock[ed]”…

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