Get to know me
Chronic illness has been a part of my life for pretty much as long as I can remember, due to being diagnosed with ME at the young age of 2 years old. Since then, I’ve picked up various other diagnosis along the way, with my health unraveling the most during my early 20’s. What started as occasional flare-ups and a need to pace myself soon spiralled into a relentless cycle of symptoms that disrupted pretty much every part of my life. I now use a mobility aid (of one form or another) everyday, have a stoma bag, wear hearing aids and have orthotics for just about every joint!
It’s taken years for me to start to work out what is going on – and there are still many unanswered questions. I’ve been dismissed, misdiagnosed, or told I was too complex for help. At times, I’ve been made to feel like a burden simply for needing support. I’ve seen first hand where systems excel and where they fail us as people with disabilities. Due to the options provided being unsuitable, I’ve had to privately source my own mobility aids – and often, I’ve got it wrong, costing me time, comfort and money. I’ve been misold, misled and ended up with mobility equipment that hurt me more than it helped.
A major turning point for me was meeting the AYL team and getting properly fitted for a new manual chair. The difference I felt in having something that was actually made for me has been game-changing. I want to help others have the same experience and not be left overwhelmed by the concept of the process.
Outside of working with AYL, I run my own disabled-led company with my Husband, Cameron, which is called Inkfire. We help businesses like AYL market themselves inclusively – by helping with everything from their tech set-up, to social media and building websites (like this one!). I also love to have a little go at blogging about my day-to-day over at maliandme.co.uk
Outside of work, as you can imagine I spend a lot of time at the hospital, but I’ve tried to pick up hobbies that I can take with me along the way. These include learning British Sign Language, reading, crochet, listening to Taylor Swift and watching Disney movies!