When I was six years old, I was hospitalized with Rocky Mountain spotted fever. In the hospital, they encouraged me to get out of bed, get dressed and spend as much time as possible in the playroom. I brought magazines and books to my room to read and play with other children who were on the pediatric floor. There was a girl in the room next to leukemia, and we made faces and greeted each other through our shared window. The fact that I could play did not mean I was not sick enough to be hospitalized. It meant that, regardless of my illness, I was a child with the same needs and desires as other children.
However, with adults, the same concept does not seem to be true. When sick people do it, well, anything, it is taken as a “proof” that we are boasting about our condition. Many of us face complete strangers on a regular basis when we go out in public, from the use of parking signs to the ADA accommodation request at events. We are challenged more by the people we know, who really should know better.
After getting sick, one day I decided to go to my favorite theme park. I did not do much; It was a very sedentary experience. I published a photo of myself on one of the Facebook trips with my germ mask back, I slept for days to recover from my adventure and I did not think much about it. A few days later, my mother called me about it. A “friend of the family” had seen the photo and was furious about it. Apparently, he had complained to several people that if I was in a theme park, I was obviously well enough to be working and I was doing some kind of scam. I had returned to my mother.
I immediately disinterested and blocked the person, but their actions stayed with me. For most of the next year, every time I posted a picture of myself doing something fun, I looked over my shoulder. I always insisted on describing how sick I was and how I had needed to rest, and how tired I was afterwards. I felt the need to rate what I was doing; to verify that he was still sick, and to remind everyone that there was more to the truth than was visible in the photo. The ignorance of someone and the unpleasant judgments had made me feel guilty for enjoying my life as best I could and bothering my mother, and that was inconceivable.
It often seems that there is no real way for people with chronic illnesses to win this battle. Hostile people who do not want to believe that you are really sick will find fault with anything you do. There is no way to appease them, no matter how they live their lives.
Some people with chronic diseases can exercise, others can not. Some of us are encouraged to be physically active in some way to help us maintain function (I have a series of physiotherapy exercises to do every day to help with some specific orthopedic problems, for example). However, if they see you physically active in some way, it is taken as a sign that you are not sick after all. Society likes to applaud Olympic athletes who fight against their disease or disability to compete. If you fight for your illness or disability to do something physical at times, like a 5K or a dance show, it can be seen as proof that you are a fraud.
It is widely accepted that having a strong and supportive network of friends and family is useful for those with chronic illnesses. We are told that, for our own welfare, we should leave the house from time to time. However, if we dare to go out in public with friends or do something fun from time to time, again, some will believe that we are not sick. And if we spend an afternoon at the cinema again and again, it is somehow equivalent to being able to spend 40 hours a week, 50 weeks a year, at work.
If you live alone or do not have much support, you still have to take care of daily tasks, but something as simple as buying your own food could be seen as proof that you are fit for the body.
If you are too tired or exhausted to shower, put on your hair or get dressed, you have let yourself go; If you come out with makeup and stylized hair, well, obviously you’re not sick because you do not look sick.
If you post photos on social networks where it looks good, people will think you are not sick; If you post photos of you in treatment, you will be accused of being a care seeker.
If you tell someone about the progressive course of your illness, you are pretending because the niece of your Aunt Edna’s child had the same condition and now it’s okay.
The photos of social networks and the observations of people with chronic diseases smile and seem “normal” or run errands, they have even been used to deny or eliminate disability benefits, which is possibly the most disturbing. It is difficult to understand that disability determination specialists, doctors and government benefit administrators, people who supposedly know a wide range of health conditions, do not accept the concepts of good morning, recovery of investment and invisible diseases that do not always have linear trajectories.
No one seems to consider what is happening outside and around the Facebook picture they are talking about wrong. The fact that it could have been the first time in weeks that a chronic patient had to do something really fun, escapes him. They do not realize how much those activities cost in terms of pain, fatigue and reduced function. They look at a picture or a Facebook status one day and think they are experts in your life.
I’m not sure what these people think we’re supposed to do every day. We have chronic, incurable diseases. We often spend most of our time at home or in treatment as it is. We are often exhausted and in great pain. If we can not work full time, are we supposed to give up each and every moment of joy, distraction, social interaction or enjoyment? Will that help us in any way? Being sick is extremely difficult for many of us. It is even more difficult when critical and hurtful types decide that the disease should invalidate the fact that we have the same needs as any other person. Instead of telling people with chronic illnesses to leave comments and accusations, Perhaps the responsibility falls on those who refrain from refraining from doing them and taking care of their affairs. Is it really that hard to leave other people in peace?
Eleanor Roosevelt once said: “Do what you feel in your heart to be right, since you will be criticized anyway.” I have taken these words very seriously when it comes to interacting with others about my chronic illness. I am no longer particularly nice when I am confronted by improvised judges. Every once in a while, someone honestly does not understand, and politely and succinctly explaining some things helps them. Often, however, they have already reached their own conclusions and nothing I say is going to make a dent in their hostility. I will not waste time trying to justify myself to random strangers and petty acquaintances who have designated themselves as judges and juries of my life.
I can not prevent others from thinking what they want about me. However, I can and I refuse to comply when someone asks me to apologize, blame or justify leaving the house from time to time. Anyone who decides that chronic illness somehow invalidates my needs as a person, including my needs for happiness and socialization, does not worry me a bit.