Invisible disability

For many years now, people with chronic illness, mental health problems and other apparently ‘invisible’ disabilities have been campaigning to raise awareness. Recently, I’ve seen a shift away from explaining and towards questioning, and I realise it’s long overdue. Most illness isn’t visually self announcing, and the bigger issue is around what people individually, and society as a whole prefer to ignore.

I have read so many stories about people having their disabilities minimised and ignored by others. This happens a lot to younger folk who are dismissed as too young to be disabled. It happens so often around mental health – the minimising, the dismissal and denial.

“You don’t look like you’re in pain’ is the most common form this takes. This is because when you live with pain all the time, you learn how to not have that on your face. It’s a necessary social skill if you’re going to do anything other than scream all the time. I got most of the way to being ready to give birth with medical professionals not taking me seriously because I wasn’t exhibiting enough distress. This is not an unusual thing to have happen. 

The problem isn’t invisibility, it’s the ways in which people habitually read each other’s bodies and faces. It’s the refusal to accept that a person can both need a wheelchair and be capable of standing up. It’s hearing a person talk about how crippling their anxiety is and then just assuming they are being flakey when they don’t make it to your party. Undertaking not to notice or recognise a problem is not the same as it being really hard to notice.

It doesn’t help that representations of ill people in film and television are written by able people, for the greater part. This tends towards stories full of drama, heroism and/or tragedy. The grind of living long term with a limiting disability doesn’t feature much. Alongside this we have a government and media inclined to shame and blame ill people as scroungers who want something for nothing. Unless it affects you directly, these are likely your key points of reference for thinking about what other people experience.

I’m not that difficult to see. I carry a cushion when out because my circulation is poor and hard seats do terrible things to me. Getting out of seats is seldom a smooth or graceful thing for me. I can’t always get in and out of clothes without help – this can be entirely publicly visible with coats sometimes. I get tired far too easily and it impacts on my concentration. But I still get people responding with massive surprise when I explain how much should mobility I’ve lost, or that I really can’t handle a late night.

Illness isn’t always about obvious drama. Long term illness is something people tend to learn how to manage, but this doesn’t mean that anyone who appears to be managing doesn’t have a real problem. The issue is not really one of visibility at all, it has far more to do with what is noticed, taken seriously, respected and remembered.

About Nimue Brown

Druid, author, dreamer, folk enthusiast, parent, polyamourous animist, ant-fash, anti-capitalist, bisexual steampunk. Drinker of coffee, maker of puddings. Exploring life as a Pagan, seeking good and meaningful ways to be, struggling with mental health issues and worried about many things. View all posts by Nimue Brown

8 responses to “Invisible disability

  • becci

    I am in agreement with the topics and points that are raised. As you say we all try to make our symptoms invisible, even to the extent of learning new social habits to “fit in”.

  • neptunesdolphins

    My husband has tremours. He is shy about eating out since his hands shake when using utensils. He doesn’t look disabled until he starts shaking. You are right there is a burden to hide and fit.

    • Nimue Brown

      Oh, I get this one. The low level tremors are frustrating and I also do big occasional twitches that can send stuff flying all over the place. I’ve got to be very comfortable with someone to be relaxed eating in their company.

  • Christopher Blackwell

    With the exception of my using a walker, most of my disabilities are not visible to people looking at me. But I have acquired quite a list of medical terminology. I have added a few more of them this year. I do talk about same of them even joke about them as laughter seems to help. Later on today I will have a phone call from my team nurse and perhaps learn the results from my latest MRI and Cat Scan. I was rather surprised to have those two scheduled on a Sunday, as usually very little s ever schedules on a week end. Meanwhile I will adjust as needed, after all there really is no other option. Life always is adjusting to to change,whether expected or not.

    • Nimue Brown

      Hope it all goes well, and thank you for talking about all of this.

    • norelle :)

      I find that most of my disabilities are also invisible to most , it is only when I stand up or go to walk anywhere you can see I have difficulty. I have a walker , bracing, crutches depending on the day and soon a wheelchair is coming at some point, if the hospital ever come through as promised.lol

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: