I’ve read on the internet about support groups for people with MS although I didn’t really feel like it was something I wanted to get involved with. For a start they seemed to meet up during the working day when I certainly don’t have any spare time. And anyway I have lots of support already.
Then I found out about a different type of group … a group which was meeting up in a pub and so I figured that it might be alright after all.
Working though MS is a group recently set up by someone with MS who wanted to enable those diagnosed with MS to discuss their condition with like minded people. I found out about it through a friend of a friend – Katie – who also has MS and has been both very useful and supportive through recent emails (you may have seen her fab comments on here already).
I didn’t really know what to expect. I worried that it might be like one of my trips to the hospital … where I am brutally confronted with what the reality of MS can mean for some people … and leave me in a state of deflation when I am working so hard to stay positive.
On a practical level I wasn’t sure how I would find the group in the pub. How many people would there be? How old would they be? What would they be like? What would their experiences of MS be?
I wished that I had thought about this before I had arrived. As usual I was running late. I bought a drink at the bar. I suddenly felt very self conscious, worried that I looked like I was on a date and had been stood up. I ought to have arranged to wear a red carnation. Or at least taken a mobile number of someone that was going …
I picked up my diet coke, took a deep breath and did a lap of the pub, scanning the tables for anyone who looked like they might have MS (what the hell do people with MS look like??!!)
It was then I spotted a group of people sat around a long table wearing name stickers. Phew, I thought, it must be them … and it was.
Whilst I hadn’t known what to expect, I certainly hadn’t expected them to be so positive. And optimistic. And therefore like me.
What became clear is that they had all had very different experiences of MS. Some had been diagnosed for as long as 20 years, some much less. Some were on medication, some weren’t. Some had suffered definite relapses, others hadn’t.
But what everyone did have in common was that they hadn’t let MS take over their lives, or stop them doing the things that they wanted to do. Everyone still worked although some found it easier to adapt their working hours. Everyone still lead ‘normal’ lives. Everyone was able to see the humour in their situation.
What I did realise is that I have been very lucky so far. I haven’t spent years having my symptoms written off as other things. Instead I have been diagnosed quickly and am getting the help I need.
So rather than being like my post-hospital-appointment-deflation, I felt quite the opposite. Positive, optimistic and strangely proud to be part of such a great group of people.
As one lady said to me ‘I have MS. It does’t have me’.
Well here’s to that. And to our next meeting