You Don't Look Disabled

Rachel Hawley-Thomas

rachel.gabsbitesizeblogs@gmail.com

"You don’t look disabled"

This is a sentence I’ve heard many a time, and, it never gets easier to hear.

Around 1 in 4 people in the UK have a disability. Of this disabled population, it is estimated that about 80% have a hidden or non-visible disability. This equates to roughly 10 to 13 million individuals living with a condition that is not immediately obvious to others.

My disability has been diagnosed as fibromyalgia, hypermobility, chronic multi-joint pain, plantar fasciitis and a bulging disc in my L5S1. I was diagnosed approximately 10 years ago and even before this diagnosis I was told I don't look disabled so I can't be. When in fact I lived and still live with a multitude of problems every day. Fibromyalgia has over 200+ symptoms alone, and not everyone who has fibro experiences all the symptoms. But, the most common ones are general pain, fatigue and brain fog. My daily pain sits at a three; one day that could be my feet, the next my back and then the next my whole body. When my pain gets to a six, that usually means I will be spending the day in bed with painkillers, heat packs, ice packs and sleeping the day away. When my pain hits a ten, that usually means it’s time to go to the hospital. But, I don't because I get stereotyped as a drug seeker, so what do I do?

Many people go through this kind of thing every day, but we smile and we mask ourselves just to get through the day. But then that can make a flare even worse, so, we are stuck between a rock and a hard place and we slip through the cracks of the medical system because “we don’t look disabled”.

What do I do? I have learnt over the years what foods to avoid, how much exercise I can do, and what herbal remedies I can take to help. I have found CBD works for me, but I only take that when I get to a 6. I have monthly massages to help my muscles, and I do gentle stretching like yoga while also keeping a positive mind through meditation. Your mind is a wonderful thing and the phrase “mind over matter” is a real thing and can help in some ways to make my day a little brighter.

I have learnt to rest but I don’t quit; I will never quit. There isn’t a cure for my disability and like many others we have to live with what we have, but we aren't alone, we have 80% of the UK that are going through either something similar to what I have, or, one of the hundreds of other invisible conditions. There are groups on Facebook, TikTok and other social media sites where we can meet others with invisible disabilities.

Just know we aren’t invisible, we are warriors!