[Image: Artful Agony]
A few weeks ago I was in the middle of gossiping with a friend about our love lives when she decided to take the opportunity to cure my chronic illness.
We’d started off exchanging tales of our sexual exploits in the usual way mates do, but she’d gradually stopped bringing her own life into the conversation and instead started asking me some slightly odd questions about how sex related to my health. My friend is a counsellor*, but I’d never approached her for advice about my physical health condition since she’s not a doctor. I didn’t realise that we’d switched from friendship to professional consultation without my consent.
She asked me about the effect sex had on my energy levels. I jokingly said, ‘I always have spoons for sex!’. At which point she nodded triumphantly and laid out her theory: my chronic fatigue and other symptoms of over 15 years’ duration were due to suppressed emotions. The evidence for this lay in the fact that I was still able to have sex despite my illness. During sex, my emotions were being expressed, which was ‘releasing a lot of energy…’.
Except, um, not.
[Context: I usually have spoons for sex because one of my health conditions, POTS, causes debilitating symptoms when I’m upright, not usually when I’m lying down.]
Epsom salts, vitamins and positive thinking
The above would be a weird but forgettable conversation if it was a one-off. But no. Exchanges like this (although usually without my sex life involved, thankfully) are likely to take place any time I mention that I have a debilitating health condition to a non-disabled person.
My dentist, while taking a cast for a filling, magnanimously told me I couldn’t be ill because I ‘looked perfectly well’. A housemate announced over breakfast one day that if I got out more, maybe I’d want to get out more, and then I’d get better. Random strangers at events tell me I should practice gratitude. And I long ago lost count of the number of times I’ve been advised by people I’ve just met to try yoga, Epsom Salts baths, turning off all the electricity in my flat, meditation, vitamins, a vegan diet, the candida diet, the paleo diet, positive thinking, or simply ‘giving myself permission’, to cure (and let’s repeat this one more time, loudly, for the people at the back) MY. CHRONIC. PHYSICAL. HEALTH. CONDITION.**
Now obviously some of the above suggestions aren’t bad in themselves – I’ve tried many of them. But that’s the point. Of course I’ve tried them. When you’ve been chronically ill your entire adult life, you’ll try anything. I’ve been practising yoga regularly for a decade. I meditate twice a day. I suspect I have tried every special diet on the internet. I’ve had a daily gratitude practice for eight years. I’m a CBT veteran. Obviously I take vitamins. The point is that not a single one of those pieces of advice isn’t glaringly obvious and/or glaringly non-medical.
To really understand how grindingly tedious this gets, you also need to remember the following:
a) I have been chronically ill for over 15 years now, and this happens in most social contexts (including online) apart from with people I’m very close to;
b) One of the main reasons I’ve been so ill for so long is that for over a decade nobody (including doctors and benefits agencies) believed there was anything physically wrong with me – leading to years of being semi-bedridden and periods of poverty and homelessness;
and c) I have never once asked anybody except a medical professional for advice on my health. Not once.
When people feel they need to explain my illness to me, it usually comes either completely out of the blue, or, if they’re strangers, in response to my stating a basic fact about my health. Maybe I ask for a rest or a seat; maybe I mention in context that I have low energy or find it difficult to be upright for long periods of time. And then it begins.
After all these years, I couldn’t help but wonder, like the spoonie Carrie Bradshaw, WHY?
Over a series of articles I’ll be discussing some different possible answers to this question, as well as looking at why unsolicited advice (also known as ablesplaining) is so harmful, and suggesting ways to combat it (whether you’re a spoonie or just want to be an ally).
For now, the basics
For now, here’s the crash course. Earn a spoonie’s respect: when they talk to you about their chronic illness, don’t give unsolicited advice. Here are a few alternative responses:
- I’m sorry to hear. That sounds really tough.
- Is there anything that can be done to make this event/workplace/etc more accessible for you?
- That must suck.
- I’d be interested to hear more about that but only if you feel like talking about it.
- Are you getting good support with that?
- That must be challenging to deal with.
- Is there anything practical I can help you with right now (eg dishes, shopping, a lift somewhere)?
- Have you heard of Spooniehacker? It’s an amazing new magazine for chronically ill people and it’s looking for contributors! ;-D
All the above responses are only suitable in the right context, of course, and we all make mistakes, and that’s OK. We’ll discuss this more in future posts.
In Part II: Rebbeca Solnit’s essay ‘Men explain things to me’, which inspired this whole series
*Details of this encounter have been changed to protect identities, not least because the friend did afterwards acknowledge they’d been ablesplaining.
**I should add that this type of advice is just as inappropriate and frustrating for people with long term mental health conditions – that’s a whole other area that I or someone else at Spooniehacker will definitely cover in the future.