This is a common question that I’m sure anyone else with myositis or frankly any form of debilitating disease can relate to. Inevitably, people ask us how we are doing. How are you feeling? Are things any better? Are you afraid?

I was having a conversation this weekend with a friend and my fiance about this. I’ve always wanted to find a kind way of asking people to..well..not ask me. My friend Ed put this in a really simple way; I don’t want to think about it. It is difficult to explain unless you’re in the shoes of illness, but the bombardment of worriment actually causes more stress than the questioner surely intended.

I think what happens is that there is a moment of ‘self-checking’ where you have to repeat the question to yourself and ask, am I doing ok? My muscles feel poor, I’m having arm weakness, my energy level is low, I can’t move air well, etc. Not only do you then give the predictable answer of ‘no’ (or some polite form of yes), but now you’re more aware of what is going on again. For me early on it actually nearly put me into panic attacks. I dreaded visitors because I knew the conversation, through dialogue and the way they were looking at me, would center around my well-being…as if I were going to break any moment.

I spoke to my therapist about this because my wedding (which would have been a week ago) was coming up and I was working really hard on being able to make it through that day, figuring out where and when I could disappear unnoticed to medicate or rest. I was scared to death of the stream of well-wishes for my health that was about to come my way, but I couldn’t figure out a kind way to say ‘do not ask me, of course I’m not ok.’

So, this Friday I will go into surgery to have an adrenal gland removed. It got me thinking about this again. I will have visitors, I will have messages, and a few will in some way ask how I am doing, what I think of things, etc.

Know this, I love each and every one of you, but asking about my disorder in that generic way does more harm than good. I know you mean well, and I don’t want anyone to take this the wrong way. But I am not ok physically, and sometimes not mentally.

That doesn’t mean that I don’t work toward being better every single day. It also doesn’t mean that you can’t talk to me about myositis. If you have a question about what is happening, what it is, what is coming up etc. I have no problem whatsoever talking about that stuff. Saying that the situation sucks is fine. Asking what the heck dermatomyositis is, cool.

But, let’s make an agreement that illness is hard, on the body and mind. No one is ‘ok’ if they’re capable of remembering what it was like to live without it. I know you care about me. But for the future, no I am not ok 🙂 let’s talk about something else.