Invisible illness

MARIE: There was a segment recently on BBC News about a campaign to educate people about dementia, so they did an interview with an Alzheimer’s sufferer – a pleasant-looking woman in her fifties, who gave her answers unflustered and in full, grammatical sentences (not easy on live TV, I should think). One of her points was that because she generally appears completely ‘normal’, people around her don’t realize how much the disease has affected her. As she said: “You can’t see that I can’t remember things, that I can’t count money, and can’t read a book”.

Yet even after she had said that, I was still surprised to learn at the end of the interview that she had recently stopped living with her mother and had moved to a care home. Nobody lives in a care home unless they have to (however nice a home might be, it is still a very expensive way to lose your privacy), so this really brought home her point: this disease can be so far below the radar that it remains invisible even after you’ve been told that it’s invisible. How can such a well turned-out and articulate woman be living in a care home? Because appearances can be deceptive, that’s how.

And as it happens, Jon and I had discussed just that point the night before. In fact, we had started out talking about this scientific textbook he is supposed to be writing with two old colleagues, and about which he has frequently moaned and procrastinated in his posts. The manuscript is contracted for delivery at the end of the year, so if it’s going to happen at all, then it’s got to start happening quite soon. So, decision time.

Jon’s co-authors are both busy people, and I suspect that perhaps more good intentions have been shown than actual work done. And I further suspect that they suspect the same of Jon, which is perfectly reasonable as he has not said anything to the contrary. But the fact of the matter is that Jon’s ‘invisible’ illness means the job is almost certainly beyond him, and although it has been a painful process for him, he now thinks it would be a relief to drop out of the writing and focus instead on smaller and more manageable projects.

‘Everybody knows’ that Parkinson’s is all about shaking, right? Wrong. Jon has very little tremor (except when stressed). ‘Everyone’ also knows that Parkinson’s is a motor disease, right? Wrong again. Although Jon has motor symptoms (rigidity in particular), his main symptoms are to do with fatigue, poor concentration, inability to multi-task, and poor response to stress.

Because everyone can see that Jon is doing reasonably well physically, and expect the disease itself to be mainly physical, nobody actually understands how much it affects him and his life. Nobody can see how hard he has to work to concentrate enough not to have forgotten the beginning of an article by the time he gets to the end. Nobody knows see that it takes him the best part of two days to produce a blog post. Nobody realizes that even the most routine practical task becomes a major undertaking – for instance, he used to do all the vacuuming but has had to give up because rigidity means he can’t bend to clean under tables and beds, back pain means he needs a half-hour lie-down after vacuuming one room, poor balance means he can’t walk backwards (which I now realize is what one does when cleaning the floor), inability to multi-task means he can’t lift something with one hand and vacuum under it with the other, and fatigue means that if he nevertheless persisted he would completely wiped out for the day.

But he looks fine, so people think he is fine. When we see friends, Jon pops an extra pill so as to enjoy the evening more, so he usually acts fine too. And of course he only calls up his co-authors when his drugs are at maximum effect, so he performs just fine – at least for the duration of the phone call. There is no way that they can be expected to know that Jon’s invisible illness is stopping him from writing his chapters.

So he’s going to have to tell them. And they are going to have to believe him, even if they cannot actually see the issues that are keeping him from holding up his end of the writing, and perhaps think they would be doing him a favour by encouraging him to stay in the game. I didn’t realize how badly affected the woman with Alzheimer’s was until she said she was living in a care home. Maybe Jon has to point out that nobody receives permanent disability benefits unless they really are unable to do their job anymore.

(BTW, Jon sees all my posts before they are uploaded, as I see all his. He approves of what I've said here, and actually encouraged me to write it.)