World MS Day was on 30th May. One of the main discussions was around #MyInvisibleMS. Some compelling stories out. I wrote this on the day but delayed posting… so publishing now….
There are many frustrating things about MS. It’s invisibility is an element of that although, whilst at times confusing, perhaps it is also something to be celebrated. Would I rather it were highly visible?
This invisibility, which I have covered before, does however lead to a question.
Should I actually tell people that I have MS?
This is a simple question but the answer is, of course, mesmerizingly complex. So many variables.
At the moment, I am physically in great shape with limited visible symptoms. My trembling is not bad, my right arm and hand are not as strong as they should be but they have also been worse. As this blog mostly focuses on cycling up mountains at the moment it is clear that I am fit.
That said, I can stumble and have had a couple of small stumbles. My coordination issues mean I am noticeably slower going down the stairs than up, perspective a little up the spout. In isolation, though, not noteworthy. Weirdly, I am stable on a bike but walking, especially in small spaces, can be a little unstable.
The main issues for me at the moment are cognitive. Memory and concentration are struggles. There is also the fatigue element. Tiredness which leads to sleep. Invisible but certainly impacting.
Fine if I am at home! But what about in the office or during a busy meeting?Not the best look to fall asleep.
Or I have a sudden twitch and drop something or have a slight fall in a busy place? With people all around me.
What happens when I am talking and suddenly cannot get the words out of my mouth and stutter or sound drunk? In the morning at breakfast when generally I am not drunk….
The way to respond is normally common sense and a bit of proportion. If you are in a shop and you stumble or drop something no-one will notice, just mumble excuses and carry on. An small moment in life that does not need explanation.
Colleagues and friends who you often see? That’s different.
Colleagues you work closely with need to know, in my experience. They need to understand just why I was listening attentively one minute and then falling asleep the next.
Similar with those with whom I will be working over several days. There are bound to be moments of fatigue in such circumstances, it’s better that key individuals, for example a trainer, are aware. No need to always be specific, just take a moment over coffee to say that I have a medical condition that can lead to fatigue and would they mind if I step out for the occasional break? Invariably it’s not a problem, adults are adults.
It is best to use common sense.
There are also times when it just happens. Moments when I suddenly say what is wrong with me. For example, something that happened at Gatwick Airport recently. A blast of the trembles just when taking out the PC and bag of fluids out of my rucksack.
“Sorry, I’ve got MS.”
Despite all I said above, it just came out. Perhaps slight nerves as this was the security desk? Certainly that probably led to a feeling that I should explain what was happening.
Not important, the response was friendly, helpful and….. Adult.
A small example that reveals just how difficult it is to make a set of personal rules about this. I was honest about my condition to a complete set of strangers because of one small set of problems.. On an impulse, contradicting much of this post. And the response was just perfect.
There are strangers who are open, friendly, helpful when they are told what is wrong….
Then there are friends who are not friends anymore.
The point is that there can be rules and preferences for everything. They don’t always work. If I could, I would be honest with everyone who is around me when I have a problem. But this would be too much effort for something that can only be moment and I cannot predict the reaction such a confession will receive from someone who I will probably never see again.
You can spend too much time thinking and worrying.
So, to answer the question of this post, should I tell? I just go with my gut. My preference is to be open but it cannot always be so. I get it wrong and I get it right. More often the former but that is pure luck.
Such is life, with MS and without.