Patricia de Wolfe is tired of saying ‘sorry’ on account of her energy-limiting illness.
I’m sorry. I’m really sorry.
Sorry I can’t make it to your birthday party, your family gathering, your funeral. Sorry, no, I can’t come over for tea on Friday. Why? No, I’m not doing anything else. But I’m going out for lunch the Tuesday before. Yes, I know that gives me Wednesday and Thursday to recover but Friday would still be pushing it. And tea is a bit late in the day for me. Yes, I am sure. Perhaps we could meet next week? Yes, I know I cancelled last time. Yes, of course I understand you’re very busy… Sorry.
I want to stop apologising. I want to stop explaining. For me, inclusion would mean, at the very least, living in a society in which it is generally accepted that some people are ill. Chronically. Perhaps permanently. And in which we are not regarded as freaks, or hypochondriacs, or scroungers, or, for that matter, just “poor things”, but as people valiantly trying to cobble together something that feels like a life in the teeth of gargantuan obstacles.
It’s possibly because I have ME, a contested and fluctuating condition, that hardly anybody grasps how limited and fitful my capacities are. But I’m not sure. I have another, medically more respectable, autoimmune disease, but that doesn’t do it for me either, socially. Nobody’s heard of it. Perhaps you need a well-known disease that is clearly visible at all times. Or perhaps, whatever the problem, people desperately don’t want to register that there is such a thing as illness that doesn’t get better, and could hit anyone. Them, for instance.
A sense of exclusion is probably unavoidable when you live in such an atypical and restricted way. It can be hard to be the only person not to make it to, say, a family celebration, even if everyone were understanding. And, on the rare occasions when I get to a social event, it can be painful to hear stories about holidays and outings I would love to go on myself. But it would at least be good not to feel embarrassed at not contributing to these conversations. It would be amazing if the currently dread question: “What do you do?” could be taken to mean something broader than: “What paid employment are you in?” so that a truthful answer didn’t produce an excruciating silence.
Of course, there’s a massive obstacle here. If you’re of working age and not in paid work, people wonder how you survive. And a social transformation enabling you freely to admit that you claim out-of-work benefits – well, my imagination doesn’t stretch that far. Sorry…
It’s because I want to rescue chronic illness from the realm of the unmentionable that I opt for “chronic illness”, not “disability”. “Disability” sounds so much more optimistic now that we have the social model. Just provide – not, of course, that anyone usually does but it’s the principle of the thing – the appropriate aids and adaptations, and: problem solved! But with illness it’s often more complex: no, sorry, really sorry, but I can’t come to the demonstration even if you push me in a wheelchair: exhaustion… dizziness… noise. So sorry, really kind of you, though… Sorry.
Patricia has had ME and a collection of other complaints for many years. She whiled away some of these years slowly studying for a PhD in medical sociology. She is now a trustee of her local ME group and helps members with benefits information and applications.
Read Patricia’s article: ‘Private Tragedy in Social Context? Reflections on Disability, Illness and Suffering’