It seems MS has a crafty capability of being able to helping you lose friends that you thought were pretty solid, and gain friends from places you never expected.
When I was first diagnosed, all of my friends were really shocked and incredibly supportive (at first…) I don’t think that many of them had much understanding about what MS was, and a lot of them didn’t really know how to respond. Some of them asked a lot of questions, others didn’t ask any for fear of upsetting me.
The flakey friend
What I noticed over time though, was that these friendships began to – well – disappear. I have become the flakey friend, the one that always cancels last minute, the person that can’t come out for evening drinks, and someone who can’t do the things we used to do. I think what happens is that the less you say yes, the less you get asked.
With MS, it isn’t that you don’t want to go and do these things… there are several things that stop you
- you are too in pain/too tired to go
- you are worried about being in pain/too tired to go
- you are worried about the impact it will have on your energy for the rest of the day/week/month
- the activity/event is unsuitable for you to go (too cramped/too hot/too physical
I have noticed that I definitely turn down more things than I ever have because of all of these reasons, some all at the same time! MS causes me a lot of anxiety about future planning – how on earth do I know if I will be ok on that day?
A common ground
Maybe one of the main issues is that you don’t have the same things in common like you once did. I have given up lots of things I was once really interested in due to my disability, and it means that I have less to talk about with people I was friends with. I have noticed that I just can’t find that common ground with them anymore and whenever we meet up there’s those tumble weed moments…
Strangers into friends
Weirdly, MS also has a sneaky habit of being able to turn strangers in to friends as well. Since having MS, I have met some of the best people in my life. Admittedly some of them I have only met in person once or twice, but I connect with them often through social networks. I think it is really important to connect with people who have MS, because as the saying goes
‘you don’t get MS until you get MS’
I have met people from different countries and all different places that I never would have if I had not being diagnosed with the disease. I have volunteered and taken part in things that I would not have had the opportunity to do. Weirdly, in some ways MS has made me a better person!
What can you do?
One of the things I would absolutely recommend is try and get out of your comfort zone and go and connect with people. It is definitely hard, but MS can be lonely. It has been brilliant to be able to network with other MSers and share experiences with them – one of the best things is knowing that someone else shares the same symptoms as you! You might have a weird symptom that you think no one else around you understands, but trust me, there will be another MSer out there who has it too.
If you don’t know where to go and find people with MS, I joined Shift.MS and now volunteer for them. They have a really positive friendly community and it is their mission to reduce the feelings of loneliness and isolation caused by MS. They have a buddy system, and a brilliant forum for advice from other MSers. The MS Society also has local groups across the UK, and an online blogging community and forum as well.