Our latest blog is written by Shona Louise, a patient inclusion writer and advisor at Leva Clinic. Shona is a disability blogger and advocate . She has written in Metro, Guardian, Independent and was a member of the patient advisory group for the British Heart Foundation. We are delighted to welcome Shona to the Leva Clinic team.
Chronic pain is something that I’ve been living with for over 8 years now, since I was 16 years old. When my school friends were getting weekend jobs I was resting in bed, and when they went off to university to work towards their dream careers, I was having surgeries. As a child I had dreams of working in medicine, but as my genetic condition Marfan Syndrome began to affect me more and more, it felt like the concept of working any job was a far fetched one.
So, to be sat here now at 24 years old with a career I can be proud of, a career that works with my disability, is incredible.
It all started with a blog when I was 14 years old, but I never expected for one minute that one day it might lead me to my career. It was a hobby at first, but as my chronic pain continued and I realised that a typical 9 to 5 job was not going to work for me, I began to see it as a potential job. I was able to go from having no career prospects to suddenly building the perfect job for me, personalised to my needs, where I could be my own boss.
I’m now a freelance writer and journalist, a freelance photographer and I run a small Etsy shop. All of these jobs are ones that I can control my hours for, and each of them suit me better on some days more than others. Writing requires a lot of brain power so on days where I’m feeling more fatigued I can turn to my Etsy shop instead. And, when I want to do something that gets me out and about, I have photography. I can choose exactly what works suits me best depending on my symptoms and pain levels on that day.
This leads me to today, where I get to take on incredible jobs such as my new role as a patient inclusion writer and creator for the Leva Clinic. Using my experiences as a patient in my writing is something I have always been passionate about, the power of a lived experience cannot be underestimated, so I’m really excited that I’ll get to put that to good use here. The Leva Clinic is exactly the kind of personalised patient support that I would have benefitted from so I’m really proud that I can help build something that will undoubtedly change lives for the better.