Living with disability

Today is International Day of Persons with Disabilities (Tuesday 3 December 2019). This is a day to help everyone become more compassionate and understanding of the challenges faced by people with disabilities. I asked some South Leeds residents about their own experiences and those of their children, as well as sharing my own family experiences to help spread the awareness.

Elisia’s Story

I was diagnosed with Multiple Sclerosis (MS) in my 30s. MS is a condition where your immune system, whose job it is to find infection, mistakes myelin for a foreign body and attacks it. This damages the myelin whose job it is to protect the nerve fibres in the central nervous system which helps messages move clearly between the brain and body.

Damage is caused to the nerves that over time become permanent disability. Symptoms can include loss of balance and dizziness, stiffness or spasms, extreme fatigue, pain vision issues and memory. There is currently no cure for MS, but treatments are around whose job it is to slow the damage down.

Everything changed for me when I was diagnosed. It doesn’t just effect you physically, but also mentally. It’s also know as an invisible illness because you can’t always tell by looking at someone that they have it.

I’m more mindful nowadays that time is precious and that rest is extremely important, even though others my age don’t have to consider these things. My children are my absolute passion and my disability has inspired me to try new things and push out of my comfort zone. Last year myself and my children went abroad for the first time, I wouldn’t have done this before my diagnosis but these things wake you up in a way that you have to start living.

Christine’s Story

I was diagnosed with Rheumatoid Arthritis in my early 20s. I woke up one day and couldn’t bend any of my fingers and they had a blue tinge to them. Another day my knee ballooned and I couldn’t walk. I had no warning and there was no obvious cause.

Eventually I was diagnosed with Rheumatoid arthritis by a specialist. My immune system attacks the joint tissue causing it to inflame, which in turn splinters and wears away the joint bones through the pressure caused by the swelling. I’ve had toe joints removed, have deformities in my left leg, my wrist tissue has worn away completely. It can also attack organs including the heart, lungs and eyesight too. Usually other illnesses will join the party, so I also have Raynaurd’s, Osteoarthritis, Osetpina, Asthma, Endometriosis, and Cachexia (muscle wasting).

My treatment presently, as I am allergic to anti- inflammtory druga, are tramadol and methotrexate which is a chemo drug.
When I got my diagnosis I was scared. From being an extremely able, sporty type to then being told my bone age was that of a 90 year old women and I’m technically frail was a shock. It didn’t match my early 20’s dreams or aspirations and my life became about feeling well and reducing pain.

The mum guilt was real. I couldn’t push my daughter’s pram or hold her to feed as it was too painful. My kids never got into sports as I never got to pass on my passion for football because I didn’t have the energy for it.

It creates a functional depression because you have this determination to do the simplest things and you feel defeated when you repeatedly can’t do them. It did however create independent, caring and empathetic children who I’m very proud of.

I know my disability can cause confusion as sometimes I’ll use an aid, sometimes I’m fine. I completed an obstacle course twice so surely I can’t be that bad?

Well a little secret us with chronic conditions have is we strive to act well. Sure, I’m supposed to use a crutch all the time, but if I don’t need it I want to present like an able late 30s woman.

I run on a lot of pain meds too which I rely on to function at all. Some days it will hit me and I’ll have to give in, or I can’t get dressed alone. It also comes in flares so some days I’ll be just dealing with the osteo and muscle wasting, other days the rheumatoid arthritis will kick in and I’ll be stuck in bed.

Don’t presume I’m faking because you saw me on a good day. Because that good day takes a lot of effort.


This post was written by Christine Smart

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