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.