Chronic Rants

I’ve heard it far too many times: But you always look so good when I see you. Or along the same lines, My brother doesn’t understand your illness because you always look good when he sees you.

I’ve written before about the masks we wear to hide how we really feel. That’s definitely part of it. I’m good at wearing a smile when I feel lousy, speaking positively when I’m sad, and in general hiding how I feel. Yes, that’s definitely part of it.

But then there’s the other part. It’s so obvious, and yet people seem to constantly miss it. It’s really quite simple: I don’t leave the house when I feel really crappy. That’s why no one sees me when I don’t look ok. When I’m out, it’s because I feel well enough to be out, and if I feel well enough to be out then I feel well enough to present as ok. On the other hand, when I’m so exhausted that I have trouble picking up the tv remote, when my brain fog is so bad that I mess up making a salad (which I actually did yesterday), when the pain is so horrible that walking to the bathroom is excruciating, then I stay home. If I stay home, then no one sees me. See, I told you it was simple.

The funny thing is, as simple as this concept is, it took me a while to realize the pattern myself. When I heard those comments, I just figured people weren’t being very observant. They were ignoring my pale skin, slight limp, occasional wince. It took me a while to realize that even though the symptoms are there and can be noticed, the really bad symptoms, the ones that are just about impossible to miss, are almost never seen by others. There’s been the occasional ex-boyfriend or my mother or a friend who I was visiting with, but that’s it. No one else has seen me when I’m feeling really, really bad. So how can I expect them to understand?

I used to respond to those comments by saying that I’ve learned how to cover things up, or that they just didn’t notice, but not anymore. No. In line with my new policy of honesty, I now tell them the truth: they don’t see me on my truly awful days. And then I offer to describe what those days are like. I feel better, and I think it’s enlightening for them. I hope it makes them think twice before they judge anyone else.

Sometimes it’s what you see. And sometimes it’s the absence.

This entry was posted on Friday, August 23rd, 2013 at 10:01 pm and is filed under Educating, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Symptoms. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.