This post is based of a comment I gave in response to some criticism of my popular “Why no one cares about chronic illness, still” post.
I am one of the lucky ones. I have some amazing friends and family who have supported me from the very beginning of my health crisis. In some ways their support protected me from the scorn of others. I wasn’t protected from horrible doctors, but I wasn’t left unsupported after being crushed by those doctors either. Because I had a nice supportive social structure I did not immediately realize how eviscerated people with chronic illness often are. I did not realize that society has no place for sick people. There is no societal support for someone who gets sick and loses everything. Society doesn’t care that there are so many people lost in the medical system. Society doesn’t care that there are very few doctors out there who will even deal with the chronically ill. Sure people care, but society does not. Society doesn’t care about sick people who can’t work; sick people are seen as lazy mooches who sit around and sponge off the system.
America is a country that was based off the idea that hard work can achieve anything; that dreams don’t need to be inherited they are made. But where do those who physically can’t work fit into that narrative? How are they supposed to achieve the dream and why do we assume that they still need to? Society has expectations that are put on all of us and they are not rolled back just because someone has a body that doesn’t work. This is a huge burden for the chronically ill. For many their failure to achieve the dream is shattering and remains a huge burden that they have to carry along with their illness.
The biggest problem is that society has yet to adapt work conditions to the chronically ill. With the advent of virtual employment there are more options than there used to be, but it’s still difficult to find a salaried job as a virtual employee. Many of the chronically ill are already employed when they become sick and they are unable to get their employers to adapt to their disabilities. Unfortunately for them if their employer fails to adapt their employment is lost and there is no recourse. The immediate circle of family and friends might care, but no one else acknowledges the injustice of losing everything because your body fails. There’s a reason the so many of the chronically ill have Go Fund Me pages, there is no place for them in the system.
What can we do to fix this? It’s not an easy question. One place to start would be better healthcare for the chronically ill. Instead of making patients schlep from doctor to doctor (none of which communicate with each other) for problems in different parts of their body, it should be possible to have a coordinated healthcare team. This way patients are not so easily lost in the cracks as they get passed back and forth from doctor to doctor. Another improvement would be finding a way to help the chronically ill to negotiate better employment options. Lets help people who want to be employed but can’t work the standard full time schedule. Lets find ways to make employment more flexible through virtual opportunities. Lets force employers to make accommodations instead of firing their sick employees. There is no easy fix, but there are ways we can improve the lives of the chronically ill. There are ways to integrate the chronically ill into society and to take care of those who are physically unable to integrate.