Living with chronic illness is hard. If you’re reading this post, I don’t have to tell you that. I don’t know what the hardest part of it is- the loss of a sense of self, the inability to do the things you love, the pain, the isolation, and the lack of independence are all pretty hard to deal with. But today I wanted to talk about something specific. The lack of understanding that we as a culture have for people with chronic illnesses makes it very hard to navigate the social world. With one paradox in particular.
You know the phrase damned if you do, damned if you don’t? When you have a chronic illness, this phenomenon is unavoidable. Too much exercise can land you in a world of pain, but not enough can lead to deconditioning. Too much medication can cause dependence or wreak havoc on your body, but too little is unbearable to live with. And the one I’m talking about today: if you act sick, you must be exaggerating, but if you act happy, you must be feeling good!
When you go to your doctor and act as miserable as you feel, they see you as a hypochondriac. When you go to the doctor with a smile on your face, they don’t take your symptoms as seriously.
When you hang out with friends with a glazed look in your face and need to be laying down all the time, you come off as a high maintenance attention seeker. When you hang out with friends acting happily and being perky, you come off as someone who feels great.
I get this all the time from people who I care about dearly. Seeing family on a good day, someone will remark, “oh, I’m glad you’re feeling better!”. It’s a perfectly nice thing to say- there’s just one problem. The underlying assumption in that statement is that you actually ARE feeling better. “Better” is a pretty tricky term for people with chronic illnesses.
But like I said, living with chronic illness is hard, and I almost never feel “good.” Better for me might mean I don’t feel like I’m going to pass out every minute I’m standing and that my head pain is at a bearable level. I still need to lie down and rest. I’m still taking pain medications on a regular basis. I’m coping- not better. At a semi-functional level. Chronic means ongoing- which means I may never get “better.”
But that doesn’t mean I can’t live my life. If I’m feeling good enough to be out and about, I’m going to smile through it. I’m a happy person. I can feel happy emotionally while my body is screaming at me to lay down in a dark silent room.
But in the days before I honed my ability to smile through the pain, there was a lot of talk. People basically questioned whether I was actually sick, or just trying to get attention and miss school. I looked a lot more like I felt- hence I must have been exaggerating or faking. Doctors suspected I was just some hysterical teenager.
I lost friends because I didn’t know how to navigate the social world. When I felt good enough to be out and about, I looked fairly normal. But if I pushed myself to be out when I didn’t feel good- people didn’t want to be around me. And I was judged for looking good some of the time and sick some of the time. I didn’t know how to advocate for myself.
Now I don’t expect people to read my mind. When someone remarks that I look great and they’re glad I’m feeling better, sometimes I just roll with it (after all, I’m using enough energy just to be there, let alone explain the complications of chronic illness to every person I meet). But if they’re someone who I think will be receptive and I’m feeling up to it, I will explain that I’m not actually better, I’m just trying really hard. They always get this surprised look on their face.
I never know if I should give in to my impulses to rub my head and put my feet up, or ignore it and keep a smile on my face. I do varying levels of both, with varying responses. I can’t speak for everyone with a chronic illness, but I pretty much never want attention drawn to my illness, because it is uncomfortable ground to cover socially.
How are people with chronic illnesses supposed to act? I haven’t figured it out yet.
We need to change the way we perceive chronic illness. Chronic means ongoing. Chronic means there might never be a cure. Chronic can mean lifelong. It means that some days you’ll look better than others.
So please stop assuming that people are either exaggerating or must be better. It isn’t an either or situation. There’s no black and white- everything is gray.
When you ask me how I’m feeling- don’t give me a look when I tell you the truth. Don’t judge me for missing an event last week if I’m able to show up today. Don’t hold me to my appearance. Don’t get upset when I do show up in sweatpants and need to sit down the whole time. Don’t get upset when I do show up in a dress and am happily interacting with people. Keep an open mind.
The thing I’ve learned most since having a chronic illness is to have empathy for everyone. You have no idea what they are going through. So that’s the principle I’m going to advocate for here. If you give people the benefit of the doubt and assume everyone has good intentions, the world is a much nicer place to live in. Try to think of everyone as a human being that has a complex life with lots of struggles. Because we all do. We all are complex.
I’m not exaggerating and I’m also not better. But that’s okay- that’s just part of my life. Thanks for understanding.