MS & Me

There is a fear of disability ingrained in many of us from a young age. Being disabled or sick is seen as abnormal. Those of us with Multiple Sclerosis (MS) often deny ourselves the joy of participating for fear of being stigmatised. Disability has typically been something to hide as it makes others uncomfortable. Since some MS symptoms are invisible many people choose to conceal their disease as they worry about being treated differently or being isolated. This is further perpetuated by ‘masking’- passing as ‘non-disabled’. Invisible MS is more ‘palatable’ to the ableist world we navigate, which is perhaps why stigma is still so rife.

Last week (Part I) Rosie Farrell wrote about changing how we view and talk about disability to bring change & acceptance as part of someone’s life experience. This acceptance is part of creating personal, societal and systemic change so accessibility & equality become basic standards in Irish society. Read on for Part II: Why are you still blocking our way to equality

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 have been diagnosed with Relapsing Remitting Multiple Sclerosis for 10 years now. That’s one MRI per year- plus the clinical trial related ones. Let’s say that I have been in a giant, buzzing magnet over 20 times.

On the eve of World MS Day, let’s talk about the importance of staying connected and mending those broken connections

The importance of connections cannot be overstated, and many people take them for granted. It is often confused with Fear of Missing Out (FOMO) Syndrome. Joni Mitchell sums it up beautifully in her song “Big Yellow Taxi” –

“Don't it always seem to go

That you don't know what you've got

Till it's gone…”

I will always remember the day my MS was diagnosed. Summer of 2010. It was a hot one.

I’m late. I schedule meetings and forget about them. I double book myself for coffee dates. I overcommit to events clinging to the unrealistic expectation that I can do it all. My life is a perpetual cycle of semi-organised chaos. Time management is my Achilles heel, a mirage glittering in the distance, just within reach but somehow unobtainable. I have always found it incredibly hard to stick to schedules, but brain fog means it’s become substantially worse. I have taken living for the now to the extreme believing that every day I wake up feeling well is limited and I’m on borrowed time. This urge to do all of the things all of the time is accompanied by latent procrastination which just adds an extra dose of panic to my entire existence. This inevitably leads to punishing guilt.

Multiple Sclerosis (MS), Motor Neurons Disease (MND), Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Guillain-Barré Syndrome (GBS)…an array of chronic illnesses, with varying abbreviations, different treatments, trajectories and yet a multitude of similarities.

All of these illnesses involve damage to the Central Nervous System (CNS) in some shape or form and the initial presentations of weakness, pins and needles, double vision and fatigue can be the workings of any and all of these conditions. Is it any wonder that MS take its time in a diagnosis? There are so many other options to be ruled out before MS can be ruled in. So many opportunities for both a missed diagnosis and a mis-diagnosis. I have always considered my MS to have been somewhat of an evolutionary diagnosis – a process of elimination by which to reach a final conclusion.

Health is a crown worn by those who are well and seen only by the sick.

                                                                                                                       Sudanese proverb

If I had it all over again… the phone call that confirmed that I had Multiple Sclerosis, and the subsequent 11 years, would I deal with it any better? Could I have made my journey to this point any easier? Were there ways to stop the mental and emotional carnage along the way? Would I ever stop feeling guilty? What would I say to myself? What would I say to me, to that Mary? It would go something like this…