Invisible Disabilities Week

This week is Invisible Disabilities Week. Lots of people have invisible disabilities, but they go unnoticed a lot of the time because they’re not visibly easy to see. There’s no wheelchair, walking aid, other aid, altered movements, scars or other physical indication. Or some people might only use aids on bad days or specific situations. It means that your condition can be questioned a lot because people tend to like to have visual ‘proof’ of disability. My invisible disability is adrenal insufficiency, which means I feel fatigued, dizzy, sick and have pain a lot of the time, and if I overdo it, I could become seriously ill. The big problem I have is that even if I explain my condition to people who are questioning me, they still don’t understand. So I tend not to. Here are some examples of problems I’ve come across with my invisible condition:

  • questions about why I’m parking in a disabled bay.
  • complaints when I’m walking slowly or because I don’t drop my linked arm when walking with a friend to get out of their way.
  • comments thrown my way when I get bumped to the top of the triage queue in A&E and seen immediately, over people who have been waiting for hours.
  • Being shouted at by other patients in hospital that I don’t need to be in hospital and I’m ‘wasting a bed for people who really need it’. This is usually because I’m at least 20 years younger than the majority of inpatients and require minimal hands-on care.
  • quiet comments about the fact that I’ve turned up to the Doctors or hospital in my pyjamas.
  • I use a wheelchair now if I go out for the day, because I struggle to walk even short distances. I can physically walk though, so people tend to make comments when I get up out of the chair to look at something or switch seats.
  • I’ve been told off a few times for refusing to get up from a priority seat when a pregnant lady has boarded public transport. I tried to explain a couple of times but it fell on deaf ears.

I feel really frustrated in these situations because I don’t see why I should have to justify myself when other people in society don’t have to. For example, people get bothered when I get up out of the wheelchair, but nobody questions why toddlers use pushchairs even once they can walk- they can get in their buggy when they’re tired or walk when they’re able, which is exactly what I do. Or why are older people who don’t use a walking aid not subject to the same interrogation about using a priority seat as I am? Just because they’re older? That’s even worse- that’s two types of discrimination going on!

But it’s not just from strangers that people with invisible disabilities can face problems. Some Medical Professionals treating me have also been quick to judge  in the past (equally I’ve had some fab HCPs). Here are some examples:

  • The condition I have is rare/not very well known, which means some medics haven’t heard of it. And it doesn’t necessarily show up on routine tests- you have to know what you’re looking for and where. So I’ve been told more than once that it’s ‘all in my head’ and been dismissed, including once when I was critically ill.
  • If I need to go to A&E, I tend to turn up in my pyjamas with crazy hair (yeti-like is an accurate description). Unfortunately, this often makes me look like a chav, which means some staff make judgements, particularly if they can’t ‘see’ what I’m explaining to them.
  • If you add the above point to the fact that I’m unemployed (standard question), people sometimes make further judgements. I ran an experiment for a while- you’d be amazed how quickly people’s attitudes change when I casually drop into conversation that I used to be a teacher.
  • Some assume that if they haven’t heard of the condition, it can’t be that bad. Particularly if I don’t look ‘sick enough’ at that point.
  • I’ve had lots of lectures about my weight and how if I lost weight I’d be healthier, the implication being I’m not doing enough to help myself. It’s usually not until I say that I was a UK size 8 until 2.5 years ago and was technically classed as underweight until I got diagnosed with AI, that people tend to stop these lectures and realise my weight is *because* of my condition, not what’s causing it.

People with invisible disabilities face two problems:

  • Lots of people assume that ‘no visible problem’ means ‘no problem full stop’.
  • Or if they’re ‘looking sick’ eg by wearing pyjamas outside the house, some people think that they’re exaggerating their illness instead.

It’s actually really hard to live with. I try not to get involved in either dialogue, mostly because my endocrine system can’t handle the confrontation and it makes me more sick. But it’s unfair. It can make asking for help difficult, because I’m worried people ‘won’t believe me’ when I need them to. Negative experiences, particularly those coming from medical staff, stick around for a long time. And it’s all happening at a time when you’re feeling most vulnerable- sometimes it’s tempting to avoid going out rather than having to make adaptations which help you do things, because it means you spend time worrying about the negative comments you might face if you do. Like I said in this post, people might think that challenging people with invisible disabilities is well intentioned and helps to stop people abusing things designed to help disabled people, but all they’re actually doing is discriminating in a different way and creating a bigger divide.

There are some people who have invisible disabilities who do ‘work the system’, but the majority don’t. And there are obviously instances where it’s important or necessary to provide proof of a condition e.g. when applying for benefit. But whichever way you look at it, in day-to-day situations, making someone prove their disability because they don’t fit your version of the ‘sick person stereotype’ is discrimination. Just because it isn’t visible, doesn’t mean it’s not there.

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