If you meet someone, and they tell you they have Multiple Sclerosis (MS), what should you do? Hmm, the best thing to do first is to say hello! Don’t feel sorry for them, don’t tell them about your sister’s next door neighbour’s cousin who cured themselves of MS, and certainly don’t assume you know more about the disease than they do.
I’ve know I have MS since 2010, and probably had it for five or so years beforehand, according to my neurologist. I have suffered from these ill-informed responses quite a few times in my ‘career’ as a person with MS. Having MS can be a terrible thing, it can be a trial, an irritation, or sometimes it can be a little bit of not much at all. It all depends on how the disease is going for the person, what their situation is regarding how they’re coping, what the weather’s like, and a large variety of other things.
I have MS, but I would never assume I know more about another person’s experiences than they know about how it is for themselves. I’m doing well with my current medication, Gilenya, but I know other people who did badly with it. I also know people who are on a medication I’ve been on, and they’re doing extremely will with it, whereas I only did OK with it, rather than extremely well.
I think the best thing to do if and when you meet a person with MS is to let them lead the conversation. Some people are happy to talk about their MS situation, others are bored by such talk, and still others don’t want to discuss it at all. That’s the thing about people, they’re all different, and with MS, peoples’ experiences can be all different too. When you have a disease that differs in the symptoms, depending on where in your body the damage has happened or is still happening, the symptoms can all be quite different.
Some people with MS suffer from Optic Neuritis, but I have no problems with my own eyes from MS, apart from being short sighted. Other people suffer from pain, whereas I would say I only suffer pain when I fall over! And that’s one thing most people with MS will agree with, they fall over more than people without MS. I also like to talk to people, so will happily launch
So, if you meet a person who has MS, why not just say hi, maybe talk about the weather to start with, and just see how the conversation goes!