When I first joined the Motability Foundation, I had no idea what it was like to be a disabled person. A year on, I thought I had gained a good picture of it. That was, until being disabled became my own reality.
Getting diagnosed
It all started with a head-on car accident in 2019, on my way to work. After the accident I felt sore but put it down to whiplash. Over time, I developed more symptoms and, after having COVID-19, my body completely shut down.
I could not understand why I was tired all the time, why I was getting muscle, joint and nerve pain, why I felt like I was sat in the Sahara. I had migraines that made me vomit. It did not make sense.
After lots of tests and back and forth with my GP, I finally had my answer: “You have Fibromyalgia and Systemic Lupus Erythamatosus (SLE)."
I was floored. I was never unwell before. The more I researched it, the scarier it felt. I remember watching Kelly Bryan on Loose Women talking about her SLE lived experience. She had a stroke, leaving her needing to relearn how to walk and talk, as well as having to have regular chemotherapy and it terrified me.
My consultant signposted me to the charity Lupus UK, where I got lots of helpful information on how best to manage Lupus.
No two days are the same
I'm fortunate my symptoms are mild, however so many overlap with Fibromyalgia it’s hard to know which causes what symptom. For those with Lupus and Fibromyalgia, symptoms can fluctuate daily and can even be weather or stress dependent.
Some days you can barely concentrate from the brain fog and, on others, your hands feel so stiff and swollen even holding a cup can be difficult. Some days you can walk ten kilometres, (albeit slowly) and some days you can barely move off the sofa.
When I see one of our grant recipients with these long-term health conditions, I understand the impact it can have on their lives.
Many of us “Lupies” can work, however, some have to work part time and others are unable to work at all depending on the severity of their symptoms. At the Motability Foundation, there are many adjustments available to me.
Since my initial diagnosis, I've developed Osteoarthritis and had a right hip replacement. I started using crutches about a year before my operation, which was daunting.
NHS crutches made my hands sore, and I hated the clicking noise they made as I moved along. Luckily, Instagram pointed me to an amazing website called Cool Crutches selling colourful ones, glittery ones, and ones you can design yourself. They were so comfortable too.
Challenging perceptions
Using my newly purchased crutches for the first time was overwhelming. People assume you have hurt yourself or ask what you've done.
In truth, I had not done anything, my body was failing me. It can feel tiring having to explain yourself all the time. I remember once telling a stranger I’d fallen off my unicorn, so they did not ask me anything else.
Inaccessible travel
Using public transport as a disabled person can be difficult. Many of us with an invisible disability avoid using trains and buses all together.
There is fear of not getting a seat, having to stand in queues or having to walk long distances between the stop and the destination. Not all of us use a mobility aid all the time.
Many of us wear a sunflower lanyard in public spaces to highlight we have an invisible disability, hoping that those around us can offer support or understanding when we need it.
There’s lots of work to be done to make public transport accessible for all and many of us are hindered further by broken lifts and escalators, inaccessible buildings and staff who are not trained to support disabled people.
Embracing the new me
This month is Disability Pride and, for me, that means embracing the new me and educating others about all kinds of disabilities and the personal impact they can have. It means raising awareness and discussing what we can do collectively to narrow the disparity for disabled people.
At times, I still feel anxious about what others think about me. Especially those I do not see every day. Some days they see me and I appear fine and sometimes I’m not as outgoing or spontaneous as I used to be. However, I am more positive now than when I was first diagnosed. I even bought myself a silver glitter crutch for my wedding day!
I know that my illness could progress but I take every day one step at a time. Some days those do not look pretty, but any disabled person will tell you we are always trying our best.
Anybody could become disabled. You might not be born disabled, but anything from an accident to childbirth could change all of that. Many disabled people face numerous barriers so let’s be more inclusive in our thinking and planning, as inclusivity benefits us all.
Disability Pride Month
Throughout July, Motability Foundation is celebrating the identities, achievements, contributions and experiences of disabled people.
Learn more about Disability Pride Month:
Scope charity: Disability Pride Month.
YouTube video from BBC Newsround: What is Disability Pride Month? | Newsround.
YouTube video: What Is Disability Pride Month and Why It Matters More Than Ever!