Years ago, when my doctor thought the only thing wrong with me was a light dusting of depression, I was referred to a service provided by… the council? I’m not sure, but it was in a room above the local library, which was all the enticement I needed. So once a month, on a Monday morning, I met with an increasingly pregnant dungarees-wearing woman who tried to entice me from my cocoon of illness back into the world.
The trouble was, everything she suggested sounded too scary.
“I just want to feel a bit better first,” I’d whine, when the thought of phoning some voluntary scheme for more information made me hyperventilate. Her response was always a mix of cajoling and emotional blackmail. “Well, I mean,” she’d say, rubbing her stomach, “You don’t want to live with your mum forever, do you?”
I knew she expected me to be abashed. I knew what the right answer was. But the truth is… Yeah, I kind of do.
Illness has always been a reliable ticket out of things I’m afraid of. It’s helped me dodge a long-dreaded sports day or two, a blogging event I was slated to speak at, more than one book launch, and my third yoga class. Anything I felt nervous about, anything where I was going to be OUT THERE, in front of people, where I wasn’t sure I could cope. I’m not talking about pretending to be ill. I’m talking about being so worried about something that my body magically obliged me by providing a viable excuse.
And I think the same thing happened when I got ME/CFS. Like most people who have this illness, I’ve been accused of exaggerating, being delusional, and just plain making it up. So, to be clear: It’s a real, physical illness that’s incredibly debilitating and sometimes fatal.
I’m not saying that what I’ve experienced can be extrapolated to anyone else with ME/CFS or any other illness. But a few months ago, I was slapped in the face with the realisation that although I want to want to feel better, I don’t actually want to.
I know that’s not OK. I know intellectually that given the choice between being an independent woman in her thirties and a sicko living at home, the former is the sensible option. But it doesn’t feel that way. The thought of being OUT THERE, on my own, expected to manage while feeling as weepy and incapable as a newborn baby, is terrifying.
Because I’ve done it. I went away to university full of dread, hoping I’d somehow turn into a well-adjusted grown-up. Instead, I spent my first night there crying and my first year there self-medicating, until finally I was too exhausted to do anything but go home, wrap myself in a duvet, and hope I never had to leave again.
That doesn’t mean I haven’t tried to improve my mental and physical health in myriad ways. I’ve sweated over CBT worksheets, cut out sugar, attended support groups, learned to breathe, medicated, meditated, and been to Florida to learn to manifest. For starters. But although I threw myself into everything I tried and was sure each new thing would be the cure, I’ve never been able to shake a vague sense of discontent I now recognise as my subconscious screaming: “Nooooooooooo, it’s not safe!”
To get better, you have to like the idea of where you’re going, and I don’t. There are things I’d theoretically like to do when I feel better — from travelling to New York to working on a magazine to living in my own flat — but each fantasy is followed by a backlash of terror.
I might get raped, I might get murdered, I can’t do that job, I’m not good enough, people won’t like me, I’m too scared, I can’t cope, I might get raped, I might get murdered.
As rubbish as it is to be ill all the time and to rarely leave the house, at least my life is a known quantity. Even if I was physically/financially/emotionally able to move out, adjusting to a new reality would be a shock to my system. Plus (perhaps because I’m too attuned to negativity) it feels like everything I read about women living in London includes words like “attack”, and “burglary”, while everything about working in the media includes terms like “I hate living with five other people but it’s all I can afford” and “cheese on toast for dinner!”
I know there’s no scientific evidence to prove that feeling more positive can lead to good things and it might be naïve to assume that if I were less resistant to change, my physical health would improve, but I don’t think it could hurt. If I had a vision of my future as a healthy, independent person that actually appealed to me, maybe I’d better take care of myself in all the small, daily ways that matter. If nothing else, I’d be more relaxed.
I’m not going to stop trying to get better, but I am going to work towards wanting to get better, as well. I get that not everyone believes that there’s a link between mind and body, and you certainly shouldn’t assume from what I’m about to say that I think people with life-threatening illnesses should reject conventional medicine in favour of sitting in a circle, chanting.
But my past experiences have shown me that when my mind really wants (to avoid) something, my body will play ball. I just need to learn how to harvest that power for living instead of for hiding.
Image: Kitty27 on Flickr.