MS & Me

My disability is not a tragedy and I am not a burden. I am not to be pitied and most of all I am not an inspiration just because I live with MS.

My MS and disability is just one part of who I am. It is part of my identity, just like gender, sexuality, race or religion may be part of yours. Yet society rarely sees it that way. And for a very long time I did not see it that way either.

I’ve lived with MS for almost a decade now and I’ve encountered numerous other people living with MS, most of whom have gone on to become very good friends of mine. One of the first topics of conversation between friends with MS is the initial diagnosis of their condition.

The when/where/how of their journey with MS. These stories can vary greatly depending on the stage of life, the family circumstances, and the financial circumstances of the person around the time that they were diagnosed.

I was diagnosed in October of 2016. The diagnosis changed me, it made me less confident, less self-assured, more self-conscious and very worried for my future. I didn’t feel like myself any more. I had always been very independent, I didn’t want MS to rob me of that. I wanted to be able to take care of my children, I wanted to be able to provide for them. I wanted my life to just stay the same. I didn’t realise back then that things would have to change to accommodate this new addition to our lives

When people are diagnosed with an illness or have mobility problems, they face a lot of firsts. The first time trying anything is rarely going to be easy and by the time the day comes around, the worry can be blown out of all proportion.

I like to think of myself as a ‘Neurologist’s Nightmare’ – a nurse by trade, with an interest in neurology and a diagnosis of Multiple Sclerosis to boot. I can nearly sense the dread before I open the clinic door. I come armed with questions – “But why?”, “But why not” and  with new research articles, new treatment guidelines that I want to share and discuss. Education is empowerment – the more we know the more confident we can be in our disease management and in our own health care decisions.

I presume you are fed up hearing about the now, not so novel coronavirus. In fact, I am willing to bet that most of us stopped being cognitively inclined to remember which variant is currently travelling around the world at free will. 'Life with COVID-19' as the government now wants us to call the pandemic, has been a trial of mental and emotional gymnastics since the day Ireland was officially added to the global list of coronavirus-targets.

And 'life with' is simply exhausting.

This year's Mother’s Day is a tough one for me. I lost my beautiful Mam on New Year’s morning after a brief illness. The first of everything is always the hardest. My dad died suddenly last year too, both parents aged 60. It's tough but I want to spend this Mother’s Day remembering all the precious years I had with my mam. 

“I have MS, but MS hasn't got me” was the catchphrase bandied about by the MS Community circa the year 2000. Have you got MS or has MS got you? 

When I was diagnosed, I fell into the latter camp. I over-identified with having MS. In my own head, I was this tragic creature diagnosed in her prime. Instead of being a person who just happened to have a condition, illness, disease or whatever you want to call it, I became this vulnerable, scared, delicate being. I became an MS sufferer.

Grief is the one thing in life we are all guaranteed to experience at some stage of life. When you lose a loved one, a pet or experience any loss you will experience grief. And for those of us who live with a chronic illness/disability, we face grief on a regular basis.

When you receive an MS diagnosis, acceptance doesn’t happen overnight. For me, there was never a ‘light bulb moment’ nor a precise day or time… in fact, my acceptance has probably been put off for a lot longer than is healthy.

It is really hard to move from denial to acceptance, to admitting to yourself that you may need assistance (whatever form it is); because MS is a progressive and incredibly unpredictable disease, there can be extended periods of time when a person does not need to use a mobility aid (or ever for some people with MS).