How MS has affected my friendships

Kaz Laljee was diagnosed with primary progressive MS 14 years ago. In 2011 he founded the online community Positive about MS which has over 20,000 members. Here he discusses the impact being diagnosed has had on his friendships and why his MS friends are so important to him. 

I was diagnosed about 14 years ago when I was in my late 20s. I’d had symptoms for many years so ultimately it was good to finally get a diagnosis.  When I was told that it was primary progressive MS and that’s why I had been struggling to walk, along with other symptoms, I was just really glad to put a name to it and finally understand what had been going wrong with me.

After diagnosis I absolutely did not want my friends to know about it. I did not want a single person to know I had MS. I was afraid of being judged because of the condition and of people changing the way they were around me. I didn’t want sympathy, nor did I want excuses being made for me.  For the first year or so, I only told my direct family and my boss and maybe two or three very close friends.

It’s not because people don’t want to be friends with you any more, it’s just that when you have multiple sclerosis your habits and abilities change. It can have a devastating effect on your social life, when you can’t do the things you once did. Slowly, slowly this results in being invited to less and less things. Not because people don’t want you to come, but if they are doing something physical or they are going somewhere that’s not accessible it can feel a bit awkward.  

With close friends however, I’ve eventually come to an understanding as they know my capabilities and realise that I can’t attend every event. I’ve also made new friends though. People with MS often end up making friends with other MSers. Initially I did this just to make sure I was normal. I was experiencing all these symptoms and struggles and to be honest it was nice to hear others going through the same thing. Eventually I ended up having lots of friends who had MS and I could share experiences with them and we’d help each other out.

I think that an MS diagnosis can change the way people see your value and what you can contribute. Sometimes it feels like your ideas and suggestions are dismissed, because of your disability. 

We accept it and understand it, because we are going through it too. We can also share helpful hints and tips with each other. When I was first diagnosed I used to use chat rooms on the MS Society website. But now we are lucky to have social media. A quick search on Facebook helps you find local, national or even international groups that you can be a part of.

My advice for other people wondering how to talk to their friends about MS is, only share what you need to. It’s good to let friends know why you can’t do certain things, as it will help them to understand. Describing symptoms might also help them understand what you are going through. But I wouldn’t really share symptoms with friends to make conversation, I think that’s what our MS friends are there for. 

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