I actually had this said to me the past week. A common misconception with people who have a chronic illness is that if we’re out doing something fun we must be feeling better. Which isn’t always the case. And certainly isn’t the case with me.
I had to explain to the person who said that that I’m still sick. And that it could be a few months before I start feeling better. My doctors are still working on some stuff and it all takes time, unfortunately. Especially when you’re waiting for specific lab tests to be done.
What people don’t see is how much these fun activities cost us in terms of energy, recovery, and pain. And what I let people see while I’m out in public is normally completely different from what I show at home. When I’m at home there are days that I’m curled up with my heating pad all day. Or my joints are killing me and I’m in tears from the pain and trying everything I can to find some relief.
So yes, I’m still sick. And yes, I decided to go ride my dirt bike for about an hour with my fiance last weekend. There are days that you just need to get out of the house and go do something. It’s important for people with chronic illness to get out and do stuff and still have fun. Even if it costs us. I don’t want to be sitting at home feeling sorry for myself.
Now, I’m not always successful in that regard. There are days that I feel too ill to go out and do much of anything. And at times I do end up feeling sorry for myself. Which is all part of having a chronic illness. Things aren’t always rainbows and sunshine and that’s ok. You just need to eventually pick yourself back up and keep going.
Which is what I’ve been trying to do. I’ve been flaring since mid-July. Could you imagine not doing anything for two months? Or more? I’m thankful that my flare isn’t so bad that I literally can’t leave the house. Because I’ve been there before. This time around I’m mostly having a lot of abdominal pain. Which can still make activities difficult. But I fight through it. I’m only functioning as well as I am right now because of the prednisone. I can only imagine what things would be like if I wasn’t on it.
So the next time you see or hear about your friend or colleague doing something fun who has a chronic illness. Try to not judge us too harshly. Many of us have gotten pretty good at faking being well in public. You won’t see the recovery that takes place behind the scenes at home. Maybe someday you’ll get to see the pain behind the mask. But instead of assuming that we’re doing better, how about asking how we’re doing instead.
Have you had someone say something like this to you before? What did you do?