When I was six years old, I was hospitalized with Rocky Mountain spotted fever. At the hospital, I was encouraged to get out of bed, get dressed, and spend as much time as possible in the playroom. I brought magazines and books up to my room to read and play with other children on the pediatric floor. There was a girl in the next room with leukemia, and we made faces and waved at each other through our shared window. Just because I was able to play didn’t mean I wasn’t sick enough to be hospitalized. It meant that regardless of my illness, I was a child with the same needs and wants as other children.
However, with adults, the same concept doesn’t seem to hold true. When sick people do, well, anything, it’s seen as “proof” that we’re bragging about our condition. Many of us are regularly confronted by complete strangers when we’re out in public, from using parking signs to requesting ADA accommodations at events. We’re challenged more by people we know, who really should know better.
After getting sick, one day I decided to go to my favorite theme park. I didn’t do much; it was a very sedentary experience. I posted a picture of myself on one of the rides on Facebook with my germ-repellent mask on backward, slept for days to recover from my adventure, and didn’t think much of it. A few days later, my mom called me about it. A “family friend” had seen the picture and was furious. Apparently, he’d complained to several people that if I was at a theme park, I was obviously well enough to be working and running some kind of scam. It got back to my mom.
I immediately lost interest and blocked the person, but their actions stayed with me. For most of the next year, whenever I posted a photo of myself doing something fun, I would look over my shoulder. I always tried to describe how sick I was and how much I needed to rest, and how tired I was afterward. I felt the need to qualify what I was doing; to verify that he was still sick and to remind everyone that there was more to the truth than what was visible in the photo. Someone’s ignorance and unpleasant judgments had made me feel guilty for enjoying my life to the best of my ability and for upsetting my mother, and that was inconceivable.
It often seems like there’s no real way for people with chronic illnesses to win this battle. Hostile people who don’t want to believe you’re truly ill will find fault with anything you do. There’s no way to appease them, no matter how you live your life.
Some people with chronic illnesses can exercise, while others can’t. Some of us are encouraged to be physically active in some way to help maintain function (I have a set of physiotherapy exercises to do every day to help with some specific orthopedic issues, for example). However, if you’re perceived as being physically active in any way, it’s seen as a sign that you’re not sick after all. Society likes to applaud Olympians who fight their illness or disability to compete. If you fight your illness or disability to do something physical sometimes, like a 5K or a dance performance, it can be seen as evidence that you’re a fraud.
It’s widely accepted that having a strong, supportive network of friends and family is helpful for people with chronic illnesses. We’re told that for our own well-being, we should get out of the house every now and then. However, if we dare to go out in public with friends or do something fun every now and then, again, some will believe we’re not sick. And if we spend an afternoon at the movies over and over again, it’s kind of like being able to spend 40 hours a week, 50 weeks a year, at work.
If you live alone or don’t have much support, you still have to take care of daily tasks, but something as simple as buying your own groceries could be seen as proof that you’re physically fit.
If you’re too tired or exhausted to shower, do your hair, or get dressed, you’ve let yourself go; if you go out with makeup and your hair done, well, obviously you’re not sick because you don’t look sick.
If you post pictures on social media where you look good, people will assume you’re not sick; if you post pictures of yourself undergoing treatment, you’ll be accused of being an attention seeker.
If you tell anyone about the progressive course of your illness, you are faking it because your Aunt Edna’s son’s niece suffered from the same illness and is now doing well.
Perhaps most concerning, photos and social media observations of people with chronic illnesses smiling and looking “normal” or running errands have even been used to deny or eliminate disability benefits. It’s hard to understand how disability adjudicators, doctors, and government benefits administrators—people expected to be familiar with a wide range of health issues—wouldn’t embrace the concepts of hello, refunds, and invisible illnesses that haven’t always been linear trajectories.
No one seems to consider what’s happening outside and around the Facebook photo they’re denigrating. The fact that this is the first time in weeks that a chronic patient has to do something truly fun is beyond them. They don’t realize the cost of these activities in terms of pain, fatigue, and reduced function. They look at a photo or Facebook status one day and think they’re an expert on your life.
I don’t know what these people think we’re supposed to do every day. We have chronic illnesses with no cure. We often spend most of our time at home or in treatment as is. We’re often exhausted and in a lot of pain. If we can’t work full-time, are we supposed to give up every moment of joy, distraction, social interaction, or pleasure? Will that help us in any way? Being sick is extremely difficult for many of us. It’s even harder when judgmental and hurtful types decide that illness should invalidate the fact that we have the same needs as everyone else. Instead of telling the chronically ill to back off from the comments and accusations, maybe the responsibility should fall on those who refrain from making them and mind their own business. Is it really that hard to leave others alone?
Eleanor Roosevelt once said, “Do what you feel in your heart is right, for you will be criticized anyway.” I’ve taken those words to heart when it comes to interacting with others about my chronic illness. I’m no longer particularly sympathetic to casual judges. Every now and then, someone honestly doesn’t understand, and politely and succinctly explaining a few things helps them. Often, though, they’ve already reached their own conclusions, and nothing I say is going to shake their hostility. I’m not going to waste time trying to justify myself to mean-spirited strangers and acquaintances who have appointed themselves judge and jury of my life.
I can’t stop other people from thinking what they want about me. However, I can and do refuse to comply when someone apologizes, blames me, or justifies me leaving the house every now and then. Anyone who decides that a chronic illness somehow invalidates my needs as a person, including my needs for happiness and socialization, I couldn’t care less.
