Door: Denise Reich
When I was six, I was hospitalized with Rocky Mountain spotted fever. In the hospital I was encouraged to get out of bed, get dressed and spend as much time in the playroom as possible. I brought magazines and books back to my room to read and play with other children walking around on the kids’ floor. There was a girl in the next room with leukemia and we made faces and waved each other through our shared window. The fact that I could play did not mean that 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.
Yet the same concept does not seem to occur in adults. When sick people do it – well, whatever – this is seen as “proof” that we bluff our state. Many of us are regularly confronted with complete strangers when we go out in public, from everything from using parking placards to applying for ADA accommodation at events. We are challenged more by people we know who should actually know better.
After I fell ill, I decided one day to go to my favorite amusement park. I did not do much; it was a very sedentary experience. I put a picture of myself on one of the attractions on Facebook with my germ mask on backwards, slept for days to recover from my adventure and did not think much about it. A few days later my mother called me about it. A ‘family friend’ had seen the photo and was furious about it. Apparently she had complained to several people that if I was in an amusement park, I was clearly good enough to work and drew a kind of scam. It had returned to my mother.
I quickly became friends and blocked the person, but their actions stayed with me. Most of the following year or so, when I put a picture of myself doing something nice, I looked over my shoulder. I have always made a point to describe how sick I was and how I had to rest, and how tired I was afterwards. I felt the need to qualify what I was doing; to verify that I was still ill and to remind everyone that there was more to the truth than what was shown on the picture. Someone’s ignorance and unfriendly statements had made me guilty because I had enjoyed my life as well as possible and had upset my mother, and that was unreasonable.
Het lijkt vaak dat er geen echte manier is voor chronisch zieke mensen om deze strijd te winnen. Vijandige mensen die niet willen geloven dat je echt ziek bent, zullen fouten vinden in alles wat je doet. Er is geen manier om hen te sussen, ongeacht hoe je je leven leidt.
Some chronically ill people can train, others can not. Some of us are encouraged to be physically active in one way or another to help us maintain the function (I have a series of physical therapy exercises to do every day with some specific orthopedic problems, for example). But if you are physically active in one way or another, this is seen as a sign that you are not ill. The society is pleased to welcome those Olympic athletes who are struggling to compete due to their illness or disability. If you fight because of your illness or disability to sometimes do something physical, such as a 5K or a dance performance, this can be seen as proof that you are a fraud.
It is generally accepted that having a strong, supportive network of friends and family is useful for people with a chronic illness. We are told that for our own well-being we have to leave the house every now and then. However, if we try to go out in public with friends or do something fun every now and then, some will believe that we are not sick. And if we occasionally spend an afternoon in the film, it somehow means that we can 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 the daily tasks, but something as simple as buying your own messages can actually be seen as evidence that you are healthy.
If you are too exhausted or have too much pain to shower, do your hair or dress up, then you have let yourself go; if you go out with make-up and styled hair, well, you are clearly not ill because you do not look ill.
If you post photos on social media where you look closely, people will think you are not ill; if you take photographs of yourself, you will be accused of being an attention-grabber.
When you tell someone about the progressive course of your illness, you fall for it because your aunt Edna’s son’s niece had the same condition and she is doing well now.
Social media photos and observations of chronically ill people who laughed and seemed “normal” or went shopping, have even been used to deny or remove disability benefits, which is perhaps the most worrying. It is difficult to understand that experts in the field of disability, doctors and managers of public benefits – people who apparently have knowledge of a wide range of health problems – do not agree with the concept of good days, payback time and invisible diseases that are not always linear job.
Nobody seems to ever consider what happens outside and around that Facebook photo they are snarling at. The fact that it was perhaps the first time in weeks that a chronically ill patient had something fun to do is beyond them. They do not realize how much these activities cost in terms of pain, fatigue and impaired function. They view one photo or one Facebook status about one day and think they are an expert in your life.
I’m not sure what these people think we should do every day. We have incurable chronic diseases. We spend most of our time often at home or in treatment as it is. We are often exhausted and have a lot of pain. If we are unable to work full-time, do we have to forego all the moments of joy, distraction, social interaction or pleasure? Will that help us in any way? Being sick is extremely difficult for many of us. It is even more difficult when hurtful, condemning types decide that disease would invalidate the fact that we have the same needs as everyone else. Instead of telling chronically ill people to shake off remarks and accusations, maybe it should be the responsibility to keep these hecklers from making them and keeping their business in mind. Is it really so difficult to leave other people alone?
Eleanor Roosevelt once said: “Do what you feel in your heart to be right – because you will be criticized anyway.” I have taken these words to heart when it comes to dealing with others about my chronic illness. I am no longer particularly nice when I am confronted with improvised judges. Occasionally someone does not understand it honestly, and politely and succinctly explaining a few things helps them. More often, however, they have already reached their own conclusions and nothing I say will undermine their hostility. I will not waste my time justifying myself to random strangers and nasty acquaintances who have appointed themselves as judges and judges of my life.
I can not prevent others from thinking what they want about me. However, I can and will refuse to comply if someone demands apologies, guilt or justifications from me to occasionally leave the house. Anyone who decides that chronic illness in one way or another invalidates my needs as a person – including my needs for happiness and socialization – does not get a point of my concern.