Invisible illness

A few weeks ago when I had my treatment, the first thing that the nurse said to me was…you don’t look like you’re sick. Being that we never set eyes on one another before, I’m not sure how she knew this, but ok, let’s go with it. I’ll even accept that we expect people who are/feel sick to look a certain way, but this really shouldn’t be. I might have thought that a nurse would not say something like that, but most times, people don’t mean anything by it – it’s a compliment, but sometimes, it does not feel like one. In an earlier post I mentioned that unless I am horribly tired (can’t hide that) or I am trying to walk somewhere, you might not know I have MS. If I’m seated or talking to you on the phone – I look “normal”. Unfortunately – “looking” normal and the thoughts of others do not cure MS. At the time when the nurse said I did not look sick, my feet felt as if a colony of bees were having a happy productive day in them, my torso was experiencing the horrendous MS hug, I couldn’t feel sensation in my thighs, but my legs felt so heavy, it took everything to move them. Fatigue was kicking me around, and my vision was blurry, but at least to the nurse I didn’t look sick. 🙂 She really wanted me to do so much more, to live so much more. I wonder if she knows I sometimes feel like that – many times I wish I could do more.

Often when people say “but you don’t look sick”, it makes me feel like I’m not giving this all I’ve got. You think I can do more – thus, I should be able to do more, but MS doesn’t work like that. I know what happens when I ignore my body trying to meet everyone’s (including my own) expectations.

I know not everyone feels like this. I have heard an earful from those who love to be told they look good, and think I should be happy when people say that. I should be more concerned when people stop saying it!

The following article was written by Matt, the leader of one of my MS groups. He is a young man, and I can only imagine what life is like when you’ve just started your 20s and MS comes knocking. It might seem harsh, depending on the experience you bring to reading it, but I consider what I might say if 20 people a day are insisting that I’m just fine, when I know that I’m not ok.

Please tell me again how I’m not disabled

invisible illness