RAiISE Your Voice – Amber

RAiISE Your Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with invisible illnesses and conditions. In this post we hear from Amber, 18, who responds to the phrase ‘you don’t look disabled.’

“You don’t look disabled” an exclamation that has become all too familiar. Your eyes scan over me, trying to depict an ailment that in your eyes would entitle me to utilise the facility from which I just surfaced. But I know, you’re right.

I don’t.

Society is painted with the preconceived idea of disability being that of someone who is elderly, wheelchair bound, clutching a walking stick, missing a limb, with a nasogastric tube upon their face. Clinging to a visual indication of illness to validate another’s actions. When in reality thousands of people live with disabilities that are completely invisible at surface level.

Be it Crohn’s, Postural Orthostatic Tachycardia Syndrome, Autism, Fibromyalgia or Myalgic Encephalomyelitis the list is endless. In a lot of cases people with these illnesses and many others can appear completely healthy to the outside world. But in actual fact they are living with debilitating symptoms, so having to explain to staff in the cafe why they need access to the disabled facilities or having to justify their actions to complete strangers, is just another hassle to add to an already exhausting trip out.

For me scenarios like the one outlined above have become a part of life in the past 4 years.

I am 18 years old and was diagnosed with Myalgic Encephalomyelitis (ME) in late 2018 at the age of 16. 2 years after the initial onset of my symptoms. I am an ambulatory wheelchair user, using my chair for long distances and busy days to help with energy management. The invisibility of my ME to an onlooking stranger when I’m not using my wheelchair is something I struggle with a lot. Whilst sometimes it’s useful to be able to blend in as “able bodied” most of the time not visibly looking disabled causes issues when trying to access help or facilities. But really I only appear to be able bodied when looking at a glance, when you delve a little deeper my disability is clear to see, whether or not I’m using my wheelchair.

If you were to pass by me in the street on a day where I didn’t need my wheelchair you wouldn’t know I was sick.
The struggles I face daily are invisible when looking at surface level.
You don’t see the pain that plagues every part of my being
Or the fatigue that leaves my body feeling like a dead weight
My worst days are invisible to you too; for they are spent in darkness hidden away
The struggles I face invisible
Until you look a little harder
Do you see me hold the wall for stability?
Do you see the empty desk in my classroom?
Do you see me flinch with pain as I stand?
Do you see me constantly hunting for a place to sit down?
Do you see the empty seat at the party? The one reserved for me
Do you see the family photos I’m not in?
Do you see me wince as the sounds of everyday life become too loud to bear?
Not so invisible now…
So the next time you decide to tut me or someone else as we leave the disabled facilities, I ask you to remember one thing: disability doesn’t have a look, an age, a gender, an ethnicity, a religion or sexuality. Just because you might not be able to see an obvious disability does not mean that there isn’t one.

Image description: Amber sits cross-legges, on a blue bed.She is wearing a red T-shirt which says ‘#MillionsMissing. She has shoulder-length brown hair, is wearing glasses and is smiling.

Amber is a blogger who writes more about her experience with invisible illness. You can read more of her work over at: https://aspectsofamber.wordpress.com/

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