On the invisible nature of chronic pain in my visible disability

It doesn’t look like it, but my skin was really sore on the day the photo above was taken. (Mostly my legs.) That’s the thing about severe skin conditions – sometimes pain is very obvious, and sometimes it’s not.

And I really relate to this article, where Samantha Rennie says

Don’t assume I’m not suffering just because I’m used to pain.

Because while I experience a level of pain most days, it’s not constant, nor comfortable, nor appearance changing. My face almost always look the same when I’m in pain compared to a low pain day, and of course I never have bare arms or legs, so apart from my walking, most people cannot tell.

That day I managed working from my desk for an hour and then from bed for three hours, then some sleep, a salt shower and some strong painkillers before I went to sleep.

And I looked the same the next day, but the pain had improved considerably.

Ableism – even from within Disability and ichthyosis communities – meant that for most of my life I didn’t call the pain I feel chronic pain. Because I didn’t feel it was bad enough compared to other impairments. Because others with ichthyosis told me that they didn’t feel pain, or they were very capable of doing things I could not. And I didn’t get the treatment I needed for the same reason.

Now I do. It’s chronic pain. In my case, chronic pain is in relation to my skin. I function as “normally” as is normal for me, and I also speak up when I cannot. I will not be shamed into feeling it’s not bad enough, or that there’s stigma around painkillers, or because of the often invisible nature of pain in visible disability.

It’s ok to say “I’m too sore today”, or “I can’t stand for long, please get me a chair” or “I’m going to find a more comfortable way to work”.

When I wrote about this briefly on Facebook last month, so many people said they experience similar, including people with ichthyosis, and parents of children with ichthyosis. It was affirming and also pervasive.

American Disability activist (and my friend), Lauren Bryant and I got chatting about chronic pain. She told me:

Chronic pain is as simple as that. pain that is chronic and doesn’t go away, ever. even if you don’t take pain medication every day, even if you’re able to ‘push through’ the pain to do the things you want or need to do, you can still say you have chronic pain. your pain is as valid as anyone else’s.”

Naming chronic pain, and talking about it – to myself and to others – these last four years – has helped me immensely.

You shouldn’t have to ride pain out, or think that it’s only “bad enough” when you’re completely unable to do things, or if your pain isn’t as bad as someone else’s. You are allowed to say “this is chronic pain” and do the things you need to do to ease it.

In writing this piece, I’ve been thinking about the language about disability, specifically invisible disability. I read this really great Twitter thread by PhD candidate and disability activist Corin Parsons de Freitas on the importance of language and perception about invisible disability. The tweets made me think of my own privilege, and also struggles, in having often invisible aspects of a visible disability. Corin writes about how aspects of disability looks.

You start to clue into terms like spoons and fatigue. You start to notice nonmedical aids and supports that serve a medical purpose. You start to appreciate a certain way of communicating about bodyminds and needs, a certain way of framing care and delivering mutual aid.

— The Tweedy Mutant ♿🌈 (@the_tweedy) September 16, 2020

This is so succinct, but something I haven’t articulated. I have a type of walk – on my toes – to take the pressure off my legs when they’re in pain. I shift uncomfortably when I’m sitting – to relieve the pain. My eyes involuntarily blink, and sometimes I can’t keep the, open – due to light sensitivity. People who know me well recognise these quirks.

Corin’s tweets have also made me think about the way I talk about and consider other disabled people. We mustn’t do an us verses them. A hierarchy of disability is not useful – all experiences are valid. If we really pay attention, all Disability is visible, especially the barriers faced.

Chronic pain, and being honest about it causing limitations, is not a weakness, nor a competition. Doing away with downplaying pain, and also doing away with playing up the disability hierarchy, is being kind to ourselves and being kind to other disabled people.

Has this post help you think differently about chronic pain and disability, or will you use it in your work? Please consider buying me a drink.

You can read more of my writing in my memoir Say Hello.