Two years ago today I put the following post on Facebook:
Many of you know that I was in hospital a few weeks ago and underwent a series of tests including an MRI of my brain and spine, and a lumbar puncture. As a result of these, I have been told I have a diagnosis of MS (Multiple Sclerosis). I am truly grateful to those of you who have been asking if I had found out what caused my symptoms, and I hope you will understand that I didn’t feel ready to share this with everyone in my life all at once. However, I wanted to ensure that the people I care about hear this from me, rather than having rumours and questions circulating. At the moment, I have a numb foot/ leg, a bit of fatigue which comes and goes and a sudden and refreshing excuse for my habitual forgetfulness! But apart from that, our life goes on as usual. I am happy to talk about it, and although I make no promises that that will be the case all the time, I would still rather people feel comfortable mentioning it to me rather than feeling scared to. I have had a steep learning curve this past few weeks, and I am guessing many people, like me, don’t know exactly what MS is, but this link is a useful place to start answering the obvious questions.
I added a link to the MS Trust’s “A Short Guide to Understanding My MS” page on their website. and fielded a heap of questions and kind offers of help and support from friends and acquaintances.
As I look back now, I realise that I didn’t in fact leave it very long before I revealed my diagnosis. At the time it felt like I had waited for ages, but that is simply, I think, because it is so unusual for me to be anything other than completely candid. I recall my hesitation in working out whether it was the right thing to do, to share it with anyone and everyone, or whether I should shield this information and keep it within a small, private circle of trusted friends.
Yet now, I cannot imagine my life without the facet of my character writ large. It is true that it has not always been viewed positively by people around me (although, those people are now no longer around me – and with good reason) but, on the whole, I am happy that I don’t have such a large part of what makes me “me” hidden away.
I felt very passionately at that time that I should be frank about what I was experiencing, and that any reluctance to do so was simply me perpetuating the glorification of perfection as an ideal state. I wanted to acknowledge, even to embrace, my “flaws”, my limitations, and to reinforce the notion that it is okay to not be okay. I felt, I still feel, that if we are under pressure from society to disguise our weaknesses, then weakness becomes a stigma, rather than a perfectly normal part of being human. I am me because of MS, not despite it.
I will always feel a sympathetic sadness towards those who viewed my condition as a threat; those who felt unable to adjust to accommodate it, who lacked the intelligence and flexibility to see it as a blessing, not a curse, to realise that it actually adds to the richness of the tapestry that is me, rather than taking something away.
I now find myself surrounded by people for whom an element of misfortune is considered a gift of sorts; who view open admission of weaknesses as a sign of inner strength. Things have had to be adapted along the way, but those adaptations and shifts have resulted in a whole raft of positive effects. I now take life at a slower pace, but I embrace it and experience it more intensely, more genuinely. I listen, read, watch…see, where I once skimmed a glance whilst multi-tasking, all the while exhausted from burning the candle at both ends. I am more balanced in my approach, more realistic in my expectations, more fulfilled at the end of a day. I am less busy but I am doing so much more; being so much more.
So no, I will never look back and wish I had kept my condition secret. My revelation to others was revealing to me, but I would never wish to pull back the cloth that hid all that I now see.