Having MS is hard and weird and confusing, we all know that, but having conversations about MS doesn’t need to be.
I was diagnosed with MS seven years ago, and in that time I’ve noticed my friends and family can find it really difficult to talk to me about my illness. I get it, they worry about upsetting me by bringing it up, they don’t know what to say. If you have a loved one with MS and you sometimes feel the same, I’ve put together a few tips that should make it a bit easier for you in the future.
If you have an MSer (a name we use for people with MS) in your life, I highly recommended doing a little bit of research on reputable sites like Shift.ms, the MS Trust or the MS Society. Whilst only your loved ones can tell you about their personal experience, it’s very frustrating to have to answer the same basic questions every time you talk about MS. Plus if your MSer is recently diagnosed it’s possible they don’t know a whole lot more about MS than you do. If you can find out for yourself stuff like, what the different types of MS are, and what words like relapse mean you’ll make it a lot easier for your loved one to talk to you.
Here’s the thing about MS, it’s really important that we can talk to our family and friends about it, but, when it’s the only thing people talk to you about it gets very boring very fast. I have other things happening in my life, I’m starting a new art project, I have a beautiful niece, I’m running a noir detective agency with my cat. I imagine the MSer in your life has other things going on as well, maybe they achieved cold fusion, maybe they are secretly Banksy, you’ll never find out if they only thing you ask about is their most recent MS appointment.
There is some middle ground between never talking about it and always talking about it. That is the place I want you to live. There are always people who find out about my MS or my most recent relapse and then get super weird when I see them. It’s like they want me to talk about MS, but they don’t want to mention MS unless I bring it up. They keep trying to drop hints to get me to talk about MS but we just bumped into each other in Sainsbury’s or whatever and I’m thinking about what sandwich I want to buy or the latest murder case that my cat and I are on the brink of blowing wide open, so I keep missing the subtle hints. The whole thing would be a lot easier if they said something like ‘Hey, I was sorry to hear about your MS relapse.’ and then I could say ‘Oh, thanks’, and get back to solving the case of the Silsden Slasher, who has probably killed three golfers in the last week.
That’s the Shift.ms slogan for a reason. MS is an illness that affects people in very different ways. Symptoms vary widely from person to person and for individuals they can vary over time. Don’t fall into the trap of thinking that you know what it is like for all MSers because you know one MSer. You need to listen to the people in your life and follow their lead.
When I was diagnosed the thing I wanted most was for the people in my life to treat me like I was the same person. That’s still what I want for me, a good conversation about MS is going to be a frank one with lots of jokes, so it frustrates me when people talk about it like it was a solemn tragedy. Of course, that wouldn’t suit everyone, some people want to talk about it loads and some people won’t want to talk about it much.
If your friend or relative or crime-fighting partner has just been diagnosed with MS the best way to talk to them is probably the same way you’ve talked about everything else you’ve dealt with over the years. That’s why I talk to Bemo my cat about it over a coffee parked in a back alley at 2am while we wait for our source to show.
Hi, I’m Letty McHugh an artist and writer living in Haworth, West Yorkshire.
My hobbies include falling off ill-advised clogs into oncoming traffic, an adventure sport I created and expect to sweep the nation soon.
I’ve been making jokes about my MS on the internet since I was first diagnosed with RRMS in 2012. You can read more posts from Letty at www.lettymchugh.co.uk