My disability exists even if you can’t see it

I was waiting in a queue when I noted the disabled toilet behind. I couldn’t reach the door to see if it was vacant so I asked the lady behind me if anyone checked.
“It’s locked,” she said. “And anyway it’s for disabled people.”
“I have a hidden disability,” I said to her, expecting some sort of backlash, but that never came.

“People don’t know how hard it is,” she said. “My daughter is on the spectrum but people can’t tell when they look at her. They don’t know how difficult it is,” she said.

We talked about the impact of living with hidden disabilities until cubicles became vacant.

I have experienced it myself, and I’ve heard many stories from people all over the world living with hidden disabilities about how they are often misjudged, or assumed to be misusing services because they look able-bodied or their disability cannot be seen.

I often feel the pressure too, admittedly, when I get on the Tube or train and sit in a priority seat, and other people come on staring at you expecting you to get up because you look well on the outside. Of course if I am able to on that day I would give up my seat and often I do, but there are days when I am in so much pain and I’m flat with exhaustion so I actually need to sit.

But the people staring at me in judgement cannot see my pain or fatigue. They don’t know how many prescription tablets I take to get through the day or the adjustments I have to have at work. Admittedly, I put pressure on myself too because I am afraid that people will judge me. And I don’t want to have to validate my disability to anyone.

Read more: Dear unbeliever: what I would say to the fibromyalgia doubters

Like the time at a previous work place when I first started and I went to use the disabled toilet, and a security guard stopped me and pointed out that it was only for disabled people. I said I was. She stared me up, down and up again in a not so nice manner before saying the loos were only for disabled people and staff.

I complained to my then manager and nothing came out of it but imagine that on top of your everyday life challenges, as a disabled person you have these extras to deal with. Anybody living with a disability has extra stuff to deal with. There’s the stuff you see, and the stuff you don’t. 

Like the many times people shouted at my friend for parking in a disabled bay even though she had a badge on display. She might look fine on the outside but she too has a disability. But why should she have to validate it to someone just because they can’t see it?

Who has the right to judge? No one knows what someone had to do this morning to get out of bed, and comb their hair or have a shower and make it to work if they can. 

I often find that people assume that if you’re working it must mean you’re free of a disability, despite us knowing that disabled people are capable of achieving anything despite our challenges.

I don't want to have to validate my disability to anyone. The people staring at me in judgement cannot see my pain or fatigue. They don’t know how many prescription tablets I take to get through the day or the adjustments I have to have at… Click To Tweet

Once, I moaned about having to attend a work event at a venue on the third floor when the sole lift had broken. I was gasping for breath by the time I got to the top and I was in so much pain.

The colleague I was moaning to said “Imagine if you had a disability.”

“But I do. Fibromyalgia is a disability. I no longer need a walking stick but I’m still in pain and experiencing a lot of symptoms that you can’t see,” I said.

She replied: “Yeah, but imagine if you had a REAL disability.”

Steam could have come out of my ears.

On International Day of Persons with Disabilities, I just wish everyone would educate themselves and be more aware. Understand that just because you can’t see a disability, it doesn’t mean it’s not there. Just because someone looks well on the outside, doesn’t mean that they are. Just because they’re working doesn’t mean it’s not ‘that’ bad. You don’t know the sacrifices and efforts people make to get through the day.

Disabilities have many different faces. It’s sometimes evident from someone using an aid like a wheelchair or walking stick, and sometimes it’s invisible.

Gentle hugs x

Cover image by Svetlana Pochatun

Read more: Five misconceptions about invisible disabilities

Read more: Hiding hidden disabilities

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2 Replies to “My disability exists even if you can’t see it”

  1. I totally understand! I taught at a school where we had to park at the bottom of a hill (no public transport available). Then we had to climb steep stairs to get up the hill and to the school buildings. Or we could walk up a steep drive to get up the hill. I used my walking stick, but it became so hard for me to climb the stairs that I began walking up the drive. One day, leaving the school and walking back down the drive, I fell. That’s when I decided to leave at the end of the school year.

    1. Gosh, that’s terrible Deb! You should have never had to be in that position to start with! I’m sorry 😞
      How have you been lately? x

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