As part of Disability History Month 2021, a staff member shares their experience
“It might be easier if you said when it didn’t hurt!” my partner said with a laugh. I laughed too, they were right – it might be! I have lived with chronic pain all my life, but was only diagnosed with a muscle condition 6 years ago. 32 years of pretending I’d forgotten something so I didn’t have to walk with my peers, pushing myself to the point of agony, avoiding social activities where I didn’t know the route, seating, or accessibility, and I suddenly had an answer… but no cure. I have McArdle Disease, an ultra-rare Glycogen Storage Disease. In short, my body doesn’t use sugar as energy correctly, so my muscles try to break down rather than accessing the usual energy resources. This means I am in constant pain, and if I overdo it, I get muscle spasms and cramps (and these can lead to kidney issues). Oh and by overdo it, I mean use a spray bottle, carry a shopping bag, or put on a seatbelt…you know, extreme sports!
One positive that the pandemic has brought is the prevalence of virtual events – meetups with friends, quizzes, gigs, webinars and shows. If you are involved in anything like this, please continue to offer a virtual element for accessibility, even if most of society has returned to normal – us disabled folks can’t just yet.
When asked my level of pain by a doctor recently, I said “Oh, just a 5 or 6” (out of 10), which was met with disbelief – how could someone so cheerful and smiley have such a high level of pain? And that’s the thing with hidden disabilities – on a good day, most things are achievable, but I will need a day or two to recover. So the message for non-disabled people is, please keep inviting us to things and make your events and opportunities accessible – I might get there a little slower than everyone else, or may cancel last minute due to fatigue, but I want to be involved!
Written by Hannah Greer, Careers and Employability Service staff, on 18.11.21
DHM at Kent
The University of Kent and Kent Union are proud to collaborate to raise awareness of the issues people with visible and invisible disabilities face today, and share ideas and opinions both within our community and the wider community to educate, de-stigmatise, and work together for a more inclusive and equal society. The full programme is available on the Kent Union website, and there is expert support for students with disabilities at Student Support and Wellbeing. For information on assistive technologies mentioned above, check out Kent’s webpage on accessing alternative technologies.
We hope you enjoy the programme and that you use it as a starting point for deeper thought and conversations with your friends and colleagues.
Follow #DHMKent21 on social media for the latest, and if you would like to contribute your experience and perspective to conversations, podcasts or articles on this theme during the month, please email StudentServicesWeb@kent.ac.uk.
Check out further articles on Disability and Inclusion.