Hidden disabilities: Pain beneath the surface
Imagine having to inject yourself thousands of times over the course of your lifetime, but never talking about it to anyone.
Many people live with hidden disabilities – conditions which don’t have physical signs but are painful, exhausting and isolating. Sympathy and understanding from others can often be in short supply.
Georgia Macqueen Black has Type 1 Diabetes.
She was diagnosed at the age of 11.
Type 1 Diabetes cannot be seen until I take out my insulin pen and inject myself, but the mechanical parts – blood tests and injections – are only the surface layers of what I have to manage.
Someone may see me inject, but there’s an isolating exhaustion I take with me afterwards. There will always be another injection and it can generate a disconnection between myself and other people.
Every day I gather the willpower to be a “good” diabetic, but when I follow the rules and still have high blood sugar I feel alone. It makes me feel foggy with a limited ability to concentrate. And the side-effects of too much or too little sugar in your blood can lead to you turning in on yourself.
The biggest challenge is accepting the monotony of managing diabetes. There are days when I’m tired of having a weaker immune system – a lesser known side-effect of diabetes – or when I find lumps under my skin from injections, but then I have to put those feelings to one side and carry on.
Some people might not think diabetes deserves the label “disability”, but if unmanaged it affects my ability to carry out tasks and I have to think how exercise, stress or dehydration will impact my blood sugar levels.
I often worry about how life will be when I’m older. This feeling of uncertainty hangs over me from time to time, and can make me feel lonely and a bit lost.
But I know there’s a silent solidarity out there. Someone with an impairment could be having a day where everything has become derailed and they feel ill, but I bet you they won’t show it. It’s that resilience that I really connect to.
Top tips on hidden disabilities
- There’s so much mental labour involved so if I seem distracted it’s probably because of that
- Believe me when I ask for help. Just because I don’t look like I need assistance, doesn’t mean I’m OK
- Respect priority seats and wheelchair spaces on public transport
- Listen to access requirements with an open mind – often small changes make a huge difference
- Ask for what you need – in asking for help you don’t have to pretend to be someone else
Produced by Beth Rose
BBC Disabilties 5.7.17