“Lisa can do it! She does nothing!!”
I’ve been volunteered and expected to do things like provide full-time child care for a friend’s child, because I “just sit at home and do nothing, anyway.” I can barely take care of myself some days, much less your child, who I care about deeply. It wouldn’t be safe for any of us. I “do nothing” because I am physically unable to do more. What I do is survive and treat my symptoms, and I’m very proud of myself for remaining positive about it.
“Ask Lisa, she doesn’t work.”
I’m expected to house sit, cat sit, organize things, do favors that are far beyond my physical capabilities, because I don’t work. But here is the thing. It’s not that I don’t work. It’s that I can’t work. There’s a very big distinction to be made there. If I can’t work to fulfill my own dreams and desires, I certainly can’t work for you. I’m exhausted by simply being. I’m in pain all the time. My health suffers severely from even doing small, simple things.
“Must be nice to sleep in every day.”
It would be nice, if the three hours I get in the afternoon weren’t the only hours of sleep I get. I’m not sleeping in. My pain is worse at night. The sleep I do get in the afternoon is the only sleep I typically get.
“I wish I didn’t have to work.”
And here I wish with all my soul I could work. Let’s switch, OK?!
“You’re so lucky! I wish I had a vacation every single day!”
I haven’t had a vacation in ages. I can’t make plans like that. And being home, sick and in pain, every single day, is not a vacation.
“You look good today! Are you back at work, yet? No?! Why not?!”
So many people don’t seem to understand that chronic means forever. I still have hope that some day I might improve enough to begin working again, but if I have a good day, or happen to look better than I feel, my chronic illness doesn’t suddenly disappear. Unfortunately.
“You’re wasting your life and your potential.”
This one gets to me. Because I feel like I am, too. So I write. I share my thoughts and my experiences, in the hopes I help someone. Make a difference. So I don’t feel like a waste. But, when my illness or pain are severe and I can’t concentrate or write, my potential disappears and it’s not something I can control.
“You have a brain, why don’t you use it?!”
Imagine trying to solve complex mathematics while someone is bashing your kidney with a pole. It’s difficult to think and use your brain when your body is in agony and you are massively sleep-deprived.
“I still go to work when I’m sick.”
I worked while sick too. Until one day I couldn’t anymore. When working would put me in the hospital. I hope you can always continue to work while sick. I truly wish this for you.
“You don’t need all those pills. Exercise, eat healthy and take herbs. It fixed me.”
I wouldn’t be here right now, hearing your unsolicited healthcare advice, without all of those pills. I’m grateful for them. I need them. They aren’t an option, they are a requirement.
It’s difficult being young with a chronic illness. Many people really don’t understand. I hope writing this will help some people understand those in their lives who are chronically ill a little bit better.
By Lisa Prins