Royal Pharmaceutical Society

I don’t ‘look disabled’, whatever that looks like

By Alison Astles, Subject Lead for Pharmacy at the University of Huddersfield

It was 2012 and sat at my work desk I realised that however I tilted my head or tried to focus, I couldn’t read the words on my computer screen. This was pretty alarming, so a colleague drove me to A&E where I was quickly diagnosed with optic neuritis, a condition that affects the eye and your vision. This led to an MRI and lumbar puncture which uncovered multiple sclerosis (MS).  

Things only got worse in the months that followed. First, I suffered continuously from double vision, then inflammation of my spinal cord caused a traverse myelitis, and I lost all sensation from my chest downwards – it turns out that feedback from your feet is really important for your balance.

However, I’d decided to train for a marathon, so didn’t let that stop me. I recovered a lot of feeling but am still totally numb down my left side.  

My experience of MS

I’m aware that, for many people, MS brings to mind wheelchairs and considerable disability, but so far that hasn’t been my experience. I have relapsing-remitting MS, which means months or years go by with no effect on my life at all, and people who meet me wouldn’t know I have a disability: I’ve never suffered the motor effects of MS and have mostly recovered from relapses.

Although the effects of MS on my thinking, reasoning and remembering are not visible to others, they’re the most significant daily reality for me. For example, a lot of us say we are terrible at remembering faces, but I really am, which is why I’m a participant in a research study at Swansea University looking at prosopagnosia – face blindness.

This causes real issues at work with colleagues and students; because we humans are such social animals, not being able to recognise people and follow social norms can be seen as rudeness or arrogance. Other hidden symptoms include fatigue and dizziness - compounded by heat intolerance, so I choose my holiday destinations with care. 

Work adjustments

I have always been open with employers about my MS, and my attitude to reasonable work adjustments has been 'I'll let you know if there's a problem'. I find employers readily understand physical disability issues but thinking and social issues are more difficult. I manage memory issues by fearsome levels of organisation, using all the electronic tools available to ensure tasks are not forgotten. I have become more used to saying to people, 'I don't remember who you are' in the workplace, but this still feels uncomfortable. The most important contribution from my employers has been the emotional support that allows me to take control of my own condition and to do what I feel is best to manage. The fan in my office is also welcome!

Health professional to service user

The change in focus from healthcare professional to service user has been humbling, I’m now part of the research community at the MS Society, giving the perspective of a person with MS, rather than a pharmacist, and this has greatly informed my own perspective on person-centred care. 

I'm grateful for the development of disease-modifying drugs that give hope to the MS community. Again, this has helped me appreciate the difficulties people face managing their medicines. For example, how do you take delivery of a fridge injection from a home-care provider when you are out at work all day? How can you maintain the cold chain whilst backpacking abroad for six weeks? Medicines are there to enhance life, not get in the way of it. 

Ten years on, I still don’t ‘look disabled’, whatever that means. The greatest challenge with MS for me has been the uncertainty – it is an infinitely variable condition with no standard outcome or progression. For a pharmacist who likes a lot of control, this is a tough lesson. 

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