Friday Thoughts: Invisible Disabilities Week

‘You look so well’

It’s a phrase I absolutely dread hearing.

The last time I remember hearing it was at my mum’s 60th birthday. Earlier in the day friends and neighbours may have spotted me leaving the house with my walker to get on the bus to pick up the last few supplies for the party after a tearful and stressed out morning. I’d been at Guide camp all week and I was sore and tired. I didn’t have the energy to curl my hair as I’d intended but I threw on a nice (but comfy) jumpsuit and popped on some red lippy. It was my Mum’s 60th, not a night I could really miss out on. But with my walking stick put away and makeup concealing my tired eyes, all of a sudden people see a different person. It’s almost as though, to others, my conditions disappear.

These days I decide honesty is my best policy and reply with ‘I wish I felt it’ and wait for the awkward silence that ensues.

Why can’t people just say ‘you look nice’? What does it have to do with how well I am? Am I not allowed to look nice and have a disability? Am I not allowed to get dressed up and still be in pain? Am I supposed to look unwell all of the time? What does unwell look like? What does a disability look like?

Pain is invisible. Fatigue is invisible. Headaches are invisible. Low blood pressure is invisible. High heart rates are invisible. Very few of the symptoms of my conditions are actual things you can see. But just because you can’t see a disability or condition it doesn’t make it any less real. Sometimes we can smile through the pain and push through the fatigue but it is always there.

Recently I’ve had a lot of comments telling me ‘You’ve Got This’ , and I know I do. I do not post these things for sympathy or encouragement, I post them to make my invisible more visible to those who may not see or understand. I spoke to someone recently who is having problems with pain and we agreed that you can’t mention it all the time because otherwise, we would never talk about anything else. But just because we aren’t talking about it, or we are in a good mood, or we are all dressed up, it doesn’t mean that it doesn’t exist.

I am often terrified to use my blue badge or a disabled toilet without my mobility aid, despite the fact these things help so much and I have full right to use these aids. I fear being tutted at or having a nasty note left on my car because I LOOK young and healthy. I am scared of being seen at the gym for fear that people will think I’m ‘faking it’, even though what they don’t see is the muscle pain I still have 3 or 4 days later.

We all know the phrase don’t judge a book by it’s cover.  Feel free to tell me I look great, but never tell me I look well.

Everyone is fighting a battle you know nothing about. Be Kind, Always.

Spoons & Love.