When I was six, I was hospitalized with spotted fever Rocky Mountains. At the hospital, they encouraged me to get out of bed, dressing and spend much time in the games room. I brought magazines and books in 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 we greeted each other through our common window. The fact that I can play that did not mean I was not sick enough to be hospitalized. This meant that, regardless of my illness, I was a child with the same needs and the same desires as other children.
However, with adults, the same concept does not seem to be true. When sick people do, well, anything is considered a “proof” that we boast of our condition. Many of us are regularly faced with strangers when we go out in public, use of parking signs at the request ADA accommodations at events. We are further challenged by the people we know, who really should know better.
After falling ill, 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 trips on Facebook with my germ mask back, I slept for days to recover from my adventure and I have not given much thought. A few days later, my mother called me about it. A “family friend” 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 work and I was doing some sort of scam. I returned to my mother.
I immediately blocked and selfless person, but their actions have remained with me. For much of the next year, whenever I posted a photo of myself doing something fun, I looked over my shoulder. I have always stressed to describe how sick I was and how I need to rest, and how tired I was after. I felt the need to write what I did; to check that it was still sick, and to remind everyone that there was more to the truth than was visible in the photo. Ignoring someone and unpleasant judgments had been guilty of enjoying my life the best I could and disturb my mother, which was inconceivable.
It often seems that there is no real way for people with chronic conditions to win this battle. Hostile people who do not want to believe that you are really sick find fault with everything you do. There is no way to appease them, no matter how they live their lives.
Some people with chronic diseases can exercise, others do 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 to help with specific orthopedic problems , for example). However, if they see you physically active in one way or another, it means that you are not sick after all. The company likes cheer Olympic athletes who struggle against their disease or disability to compete. If you fight for your illness or disability do something physical, like a 5K or a dance performance, this can be seen as proof that you are a fraud.
It is widely recognized as having a network of friends and family is very helpful and useful for people with chronic diseases. We are told that, for our own welfare, we should leave the house occasionally. However, if we dare to go out in public with friends or do something fun once in a while, again, some will believe that we are not sick. And if we go on and an afternoon at the cinema, this is equivalent to somehow spend 40 hours a week, 50 weeks a year on the job.
If you live alone or do not have a lot of support, you should always take care of everyday tasks, but something as simple as buying your own food could be taken as evidence that you are fit for the body.
If you are too tired or exhausted for a shower, put your hair or dress, you have to let go; If you go out with makeup and stylish hair, well, you’re obviously not sick because you do not look sick.
If you post photos on social networks where it looks good, people will think you’re not sick; If you post pictures of yourself in treatment, you will be accused of being a health researcher.
If you talk to someone in the evolution of your disease, you pretend because the niece of the child of your Aunt Edna had the same disease and now it’s good.
Photos social networks and observations of people with chronic diseases are smiling and seem “normal” or go shopping, they have even been used to deny or eliminate disability benefits, which may be the most disturbing. It is difficult to understand that specialize in disability determination, doctors and government officials, people who know a wide range of health problems, do not accept the concepts of hello, recovery of investments and invisible disease. linear trajectories.
No one seems to consider what is going on outside and around the image Facebook they speak evil. The fact that this may have been the first time in weeks that chronic patient 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 that they are experts in your life.
I’m not sure what these people think we are supposed to do every day. We chronic and 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 every moment of joy, entertainment, social interaction or pleasure? This will he help in any way whatsoever? Being sick is extremely difficult for many of us. It’s even more difficult when critical types and hurtful decide that the disease must invalidate the fact that we have the same needs as any other person. Instead of saying to people with chronic diseases to depart comments and accusations, it can be the responsibility of those who refrain from doing and take care of business. Is it really hard to leave others in peace?
Eleanor Roosevelt once said: “Do what you feel in your heart to be right, since you’ll be criticized anyway.” I took those words very seriously when it comes to interact with others about my chronic illness. I’m especially nice when I am faced with improvised judges.
Occasionally, someone does not understand honestly and politely and succinctly explains things helps. Often, however, they have already reached their own conclusions and nothing I say will not shake their hostility. I will not waste time trying to justify myself to strangers and little knowledge which are designated as judge and jury of my life.
I can not prevent others from thinking what they want from me. However, I can and I refuse to abide by when someone asks me to apologize, blaming or justifying leaving the house occasionally. Whoever decides that the chronic invalid my needs as a person, including my needs happiness and socializing, do not care a bit.