Thursday, 24 January 2013

The pursuit of life, liberty, and happiness

kaberettPosted by kaberett

If you've seen me perform with Lashings, you've almost certainly seen me take prescription medication while on stage. You've likely seen me on codeine. And here's what I can tell you for certain: you have never, ever seen me unmedicated.

Of course, I'm not the only one of us who takes meds on the regular: when my timer goes off in LashSpace I'm not the only one who reaches for tablets. But, well - it was noticeable that for the three-week Edinburgh run, the largest category by volume in my packing at the beginning of the trip was enough medication for three weeks. It's noticeable that in Lashings, as well as in my professional life, people tend to ask me for painkillers first - and that is 100% and entirely the reason that I carry ibuprofen with me at all times. (I'm continually maxing out on a different NSAID, so I can't take ibuprofen without serious health risks - but I like to be able to offer people something slightly weaker than neat opiates!)

Here's another anecdote for you: two weeks ago, I went to a GP at my surgery (never seen her before), and asked - among other things - about the possibility of sleeping pills to help with my insomnia. I was very, very careful to not request temazepam by name. She looked at the list of other things I'm taking - for the record, my daily meds are mefenamic acid, paracetamol, amitriptyline 25mg, citalopram 40mg, Buscopan, omeprazole, Fostair - sucked her teeth, and said that she didn't particularly want to prescribe it, because it can be awfully addictive, you know, and with everything else I'm on...

... and that, ladies & gents & everyone else, is when I had A Realisation.

Well, that's not quite true: it had been fermenting for a long time. But here it is: my approach to medication is not terribly common.

I'm reminded of this every time someone mentions that something is hurting, I offer them painkillers, and they demur: "Oh, no, it's not that bad," or "I'd rather wait to see if it clears up by itself," or any one of a number of other responses. It's not that I think there's anything wrong with that attitude - I used to be very, very good at it myself - but these days... well, I find it baffling (not least because ibuprofen has a rather milder side-effect profile than e.g. alcohol!).

I mean, of course, obviously - it's taught to us by the cultural expectations of a stiff upper lip, and of "musn't grumble"; by "the cure is worse than the disease"; by an ideal of self-sufficiency; and by a media that encourages us to mistrust medicine and medics, quite aside from all the people with good personal reasons to be mistrustful.

I know, intellectually, that I used to understand this at a deep and visceral level. I used to be so invested in the idea that I wasn't really in pain - that I was making it all up - that I'd skip my meds and put taking them off until I was on the floor and immobile with agony, and even then I wasn't sure I wasn't just an attention-seeker.

I know better than that these days.

These days, I know it's a lot easier to keep pain under control from the word go than it is to try to get a grip on it once it's unbearable. I know that for me, once I've started being in enough pain to notice, the vast majority of the time it's only going to get worse. And, importantly, I'm intimately familiar with drug side-effect profiles and the interaction of anything I'm asking for with everything I'm already on, and by the time I'm asking a doctor to prescribe me something I've definitely already made the cost-benefit analysis and I've probably already experimented with the drug in question. (Pro tip: people with chronic pain are often pretty relaxed about sharing meds with others they trust to act responsibly, in the general spirit of "try before you buy" and of "pay it forward".)

So I've put in all this work: on getting past my inhibitions about "making a fuss"; on researching my condition; on investigating plausible management regimes; on working out what might improve my situation.

Off I trot to the GP, and I say... "um, I'm having this problem, er, is there anything at all you might be able to do for that?" And if the GP sounds encouraging, I bimble on to "um, um, um, I've done some reading, um, it sounds like drug X might be useful? Maybe?"

Because here's the problem: I can't afford to be seen as "drug-seeking". I cannot afford the risk of doctors deciding that I don't actually need pain relief as pain relief, but what I do need is weaning off my addiction to the drugs that make my day-to-day life liveable. I can't be an effective self-advocate in medical settings in case gate-keepers decide that I'm a pushy patient - in case I seem too high-functioning, too well, to really need all those drugs.

And it was earlier this week that I worked out why this problem keeps arising.

(Before we go any further, I want to point out that my experiences as wheelchair-using crip are also my experiences as somebody who is thin, and white, and upper-middle class, and has access to medical journals and the education to make sense of the jargon, and covered by mummy's health insurance up to the age of 25. Most of the chronically ill people I interact with are either at (a) my university's Disabled Students' Campaign or (b) Diary of a Benefit Scrounger, i.e. heavily skewed towards activists; both have significant overlap with my areas of privilege. I can't - and don't - speak for all people living with chronic illnesses.)

People with chronic pain - with chronic illness - seem to me to be more likely to be very, very good at judging whether the side-effects and interactions of a new medication are worth the benefit we'll get from it. I've got so many things I need to discuss at every doctor's appointment that by the time an issue makes it to the top of the queue, I've probably been dealing with it for months. I often know what we want - but I don't have an awful lot of time to discuss it in, because I need to talk about three other things this appointment too.

But if you're well? Mmm. If you're healthy, and you're used to uncertain patients who aren't keen on taking pills... well, I can see why I'd come across as worryingly desperate. Mostly, it's because I am.

Just another thing, I suppose, to chalk up to coming from different sides of the cultural divide that is pain.


  1. I was brought here by a friend who linked this to me. Thank you so much for sharing and it really helps understanding your perspective to explain it this way. It's deeply illuminating to hear from someone dealing with chronic pain, as someone with a limited and different understanding of pain.

    1. Thank you so much for commenting - this was lovely to hear :-)

  2. Thank you - it's valuable reading this from your point of view.

    From mine, I dislike taking painkillers, not for some I-mustn't-complain thing, but more because, I suspect, I am lucky enough not to experience pain enough to know my limits. By which I mean: if I'm sick and I take pills and then I feel better, I give in to the temptation to continue with my day as normal, and then when they wear off, I discover I've actually made myself much worse in the meantime. Thus, I prefer not to take them, as feeling bad and being forced to take is easy is, in the long run, better for me than taking the pills. Being able to make this choice is a luxury.

    On the other hand, I *do* understand my body well enough to know that I respond badly to fevers; it overeacts and sends my temperature up into dangerous territory, and I've previously had to be treated by doctors and hospitals to bring it down again. Knowing this, the one thing I take is paracetamol if I have a temperature, to stop it from getting out of control. If I didn't have that problem, I probably again would be less tempted to take it for having a bad cold.