You would think having had myasthenia gravis for a year and a half I would know the best way to ask someone about their condition. I don’t. This is mainly because I’m not sure there is a good way to ask.
First of all, if being asked about my condition has taught me anything it’s to figure out why I want to know before opening my mouth. If it’s simply out of curiosity or intrigue, I’ve made the decision not to ask.
People are naturally inquisitive and, as a trained journalist, I often find a probing question slips out before I’ve thought twice. But the impact of that question about the thing that appears different can be significant – it can change someone’s day. To have that kind of effect if a question is asked vacantly is a bit crap.
So if I’m not asking out of curiosity, why am I asking? To offer support? Sometimes yes. The counselling I do for Childline has taught me the difference between empathy and sympathy so I believe I can be an empathetic ear if people seem like they want to talk about it.
Sometimes it may be a desire to connect. Is that selfish too? Yes and no – as I mentioned here there is a lot to be said for being involved in a community if you have an illness like MG that not many people understand. Connecting with someone who can relate to some of your daily struggles feels good.
When I think about the difference in how I respond now compared to a year and a half ago when someone asks me about my MG it’s simply that I speak about it if I feel like it. The people I don’t mind speaking to about it have asked as part of a natural conversation – like when I’ve discussed my diet or medication. It comes up naturally often if people want it to so my advice would be not to ask out of the blue.
365 days of myasthenia 