MS Awareness Week 2022
We’re at the end of MS Awareness Week 2022. The MS Society has been using the week to shine a light on the uncertainty of living with MS. In the four years since my diagnosis, I feel I have come to terms with this unpredictability.
I didn’t know a great deal about MS before my own diagnosis. I’d heard of it. A friend’s wife has it. I’d known her for twenty years and as far as I could see it wasn’t inhibiting her life. Was it something to worry about?
Even at diagnosis, the doctor told me “we think it is an unusual presentation of MS”. My future had become uncertain with the diagnosis. Not only do I now have a life-long condition, but it is somehow “unusual”. When I was discharged from hospital, I didn’t have any real idea of what this would mean.
It was about a month before I had my first MS nurse appointment so my source for the information was…The Internet. Consulting Doctor Google is never a good idea, so I stuck to official sites. The MS Society, The MS Trust and so on. Even that wasn’t ideal. There were images of people with canes, walkers and wheelchairs. Reading more about the possible symptoms was frightening. Was that my future?
The next year was nothing but uncertainty. It consumed my every waking thought. How did this happen? Was my life over? Would I still be able to do any of the things I loved? How would family, friends or employers react? Every morning I would open my eyes tentatively, take cautious steps out of bed. I was worried that I wouldn’t be able to see, stand or walk. At that point things like running, martial arts or working seemed very unlikely.
What I didn’t appreciate then was just how individual MS can be. It feels like no two cases are identical. As I got to know more people with MS via Twitter, I learned just how varied it can be, ranging from minor symptoms to severe disability, with all points in between. No wonder so many people with MS live with, and struggle with, the uncertainty. Having said that, is the uncertainty better than a disease such as MND which has a very defined pattern, and it is not good. I imagine that knowing life will be shortened and severe disability will occur within a short time frame is exceedingly difficult. There is certainty but is that any better? I don’t think so.
That is where the awareness of MS needs to be improved. That it is not a death sentence. I would like to see emphasis that symptoms are not the same of everyone. There are descriptions of symptoms on many websites but clarification that each person could experience some, all, or indeed none of these would help. That probably doesn’t alleviate uncertainty but does at least show that one person’s experience does not necessarily represent what is in store for a newly diagnosed person. It might also help prevent the natural catastrophising that happens when you receive diagnosis. I asked on Twitter what people’s initial reactions were and “I thought I was going to die soon” was a sadly common response.
It was about a year after diagnosis that MS wasn’t occupying my every thought. By this time. I had had my first round of Lemtrada. I had started exercising again. Gradually I was able to think about other things. The uncertainty is still there but I find myself worrying less about it. As I’ve learned more about the condition, I didn’t want to find myself at 70 having spent decades worrying about disability that never happened.
Four years on from diagnosis, my symptoms have been stable. A recent MRI showed no new lesions on my brain. I have been able to exercise at close to the level I did before diagnosis. Exercise has helped me both mentally and physically deal with the diagnosis and its aftermath. Obviously, this could change but I find myself in a better mental place about it. Is that the right approach?
I suppose I now consider the uncertainty of MS to be no different from the uncertainty of driving a car, going on an aeroplane and such like. If my condition changes then I’ll have to deal with that. It’s easier to have this mindset given the relatively low impact MS has had on my life. The lack of obvious progression also helps.
Unfortunately, there is no magical tip for dealing with the uncertainty of MS. Much like the condition itself, it is an individual thing. What has worked for me, might not work for you. It depends on how the condition has affected you. I can only suggest finding out as much information as possible, to help understand the possibilities. Hopefully, the charities that support us can explain how symptoms can differ so widely and how MS is not necessarily a life-threatening condition. At the end of MS Awareness Week we know MS will always be uncertain. Ironically, emphasising that might be the best thing.