As part of Disability History Month 2021, a staff member shares their experience<\/p>\n
\u201cIt might be easier if you said when it didn\u2019t hurt!\u201d my partner said with a laugh. I laughed too, they<\/span> were right \u2013 it might be<\/span>! 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\u2019d forgotten something so I didn\u2019t have to walk with my peers, pushing myself to the point of agony, <\/span>avoiding social activities where I didn\u2019t know the route, seating, or accessibility, <\/span>and I suddenly had an answer… but no cure. I have <\/span>McArdle<\/span> Disease<\/span><\/a>, an ultra-rare Glycogen Storage Disease. In short, my body doesn\u2019t 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<\/span> (and these can lead to kidney issues). Oh and b<\/span>y overdo it, I mean use a spray bottle, carry a shopping bag, or put on a seatb<\/span>elt…you know, extreme sports!<\/span><\/p>\n One positive that the pandemic has brought is the prevalence of virtual events \u2013 meetups with f<\/span>riends, 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 \u2013 us disabled folks can\u2019t just yet.<\/span><\/p>\n When asked my level of pain by a doctor recently, I said \u201cOh, just a 5 or 6\u201d (out of 10), which was met with disbelief \u2013 how could someone so cheerful and smiley have such a high level of pain? And <\/span>that\u2019s the thing with hidden disabilities \u2013 on a good day, most things are achievable, but I will need a day or two to recover. So the message for <\/span>non-disabled people<\/span> is, please keep inviting us to things and make your events and opportunities accessible \u2013 I might get there a little slower than everyone else, or may cancel last minute due to fatigue, but I want to be involved!<\/span><\/p>\n Written by Hannah Greer, Careers and Employability Service staff, on 18.11.21<\/p>\n DHM at Kent<\/strong><\/p>\n 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<\/a>, and there is expert support for students with disabilities at Student Support and Wellbeing<\/a>. For information on assistive technologies mentioned above, check out Kent’s webpage on accessing alternative technologies.<\/a><\/p>\n 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.<\/p>\n 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<\/a>.<\/p>\n Check out further articles on <\/span><\/span>Disability and Inclusion<\/span><\/span><\/a>.<\/span><\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"