For those of us with multiple sclerosis, the term MS sufferer crops up time and time again. Usually it’s in a news article reporting an incidence of discrimination or a breakthrough in research and so it’s of direct relevance. But, whatever the context, what never ceases to amaze me is people’s reaction to the word “sufferer”.
So many people I know, who have MS, throw their hands up in horror at the very mention of the word, as if it is in some way shameful.
Don’t get me wrong, I do not wish to be defined by this condition and there are many more facets and qualities to me than simply having MS. I also consider myself fortunate that my scale of disability is relatively mild compared to many I know, and yet I am fully aware that I could wake up tomorrow a paraplegic. It is such a varied condition that no two people are affected in the same way, and each individual may experience a multitude of different symptoms on a daily basis.
However, anyone who has MS, however mild or aggressive their particular flavour of it is, it has an impact on their life. They will undoubtedly have suffered at some point and probably do so almost all the time, but they don’t even think about it because adjusting to accommodate becomes an unconscious reflex.
If it takes you an hour and a half to get up and dressed in the morning, you are suffering.
If you experience chronic pain, numbness and weakness, or have no sense of balance which means you cannot walk unaided, you are suffering.
If fatigue means you have to reduce your working hours which results in your chances of promotion being diminished, or you lose your job altogether because brain fog means you simply cannot function at an acceptable pace, you are suffering.
If you cannot pop down to the shop to pick up a pint of milk on a whim because you cannot be sure there will be a parking space within hobbling distance, you are suffering.
If you cannot have a hot bath or shower because it causes your legs to go numb or collapse, you are suffering.
If you are reliant upon others to help you with your personal care because you don’t have the dexterity to hold your own toothbrush, you are suffering.
And if you are deluded enough to think that you are not suffering personally, please ask your partners, friends and children (who by default become your carers) their opinion on this apparently dirty word.
There is no shame in admitting that we suffer. It is not a sign of weakness.
If we don’t suffer, why do we need disability benefits and disabled parking spaces, accessible loos or reasonable adjustments in the workplace?
If we ban the use of the word sufferer in the context of this cruel and pernicious condition, we lose the right to ask for the quest for a cure and improved treatments to continue. We cannot expect anyone to cough up their hard earned cash when we are rattling a tin under their nose or begging them to sponsor us for our wobbly walks. Why do we need an MS therapy centre and what is the point of having the MS Society to represent and support us if we don’t suffer?
MS sufferer is not a derogatory term and it’s time people stopped complaining about it.
In the words of Forrest Gump, life with MS is like a box of chocolates; you never know what you’re gonna get. Because we suffer, by necessity we become brilliantly resourceful and find alternative methods of doing everyday tasks that non-MSers don’t even have to think about.
Of course we are not simply sufferers, we are inventors, our lives are utterly unpredictable and yet we are meticulous planners. We are strategic masterminds, we are resilient, we are battlers and we are brave warriors.
There is no weakness in admitting to ourselves and others that life with MS is tough. On the contrary, it takes more strength of character to come out of denial and deal with the realities of the situation we find ourselves in.
I am an MS sufferer and I wear that title with pride, as a badge of honour.
Badge of Honour
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