My Sassability - "If we are not seen, we are not heard"

28 April 2023

My Sassability - "If we are not seen, we are not heard"

Hayley was diagnosed with MS aged just 13. In this blog and video, she passionately advocates for the importance of being seen, not just using her wheelchair but being proud to use her wheelchair.

Hi my name is Hayley and I'm a 36 year old mum of one. I was diagnosed with MS at the tender age of 13. This was in the year 2000. It started one morning with severe pins and needles in both my feet which just wouldn't go away. The pins and needles gradually travelled up my legs and body, within the space of a week I was completely paralysed from the neck down. I was admitted into intensive care and had to be assisted to breathe via ventilation as my lungs had stopped functioning.

I spent a total of four months in hospital, undergoing various tests including lumbar punctures and MRIs, as well as having rehabilitation to learn to walk again. I was initially diagnosed with transverse myelitis (TM), but I relapsed again within that year and my final diagnosis was 'severe rapidly evolving MS'.

Over the years I've gone through many relapse and remission states and experienced symptoms such as paralysis, spasms, cramps and optic neuritis. I have also tried many DMDs to try and halt the disease progression. The longest I've been on was about 14 years. It was Tysabri and I had an amazing response to it! I was able to work and was fortunate enough to have my little girl during that period too. Unfortunately, I suffered an unpleasant relapse last year in 2022, and now need to use my wheelchair along with many other mobility aids to help me get through daily tasks. I am now on Ocrevus and hoping I remain stable enough to carry on with life!

The hardest part of living with MS is the total unpredictability of the condition. Life planning becomes so challenging as I'm constantly thinking about fatigue levels and the pain and weakness that often occurs down the right side of my body. I can be out and about using my crutches, then all of a sudden I'll be desperate to find a wheelchair as my right leg has "gone dead" and I'm struggling to walk.

If I'm not seen in my wheelchair, establishments aren't going to change as they don't know I exist. But they need to change!

This is why I am proud to use all my mobility aids and to help promote positive inclusion for everyone who lives with MS and other disabilities. I will not let MS or disability takeaway my character and style! I strive to retain as much of myself as possible which helps my mental health immensely because I'm displaying "Hayley" and not the illness

MS has taught me to try my best to live in the moment as much as possible and to be proud of how far I've come. I aim to advocate for those with all disabilities and use my own experiences and situation to be as proactive as possible. I feel that if we are not seen, then we are not heard, especially when representation is very much needed in today's society.