1. To not have to fake being well
Many people with chronic illness put in significant effort to making their illness look like it’s no big deal. Instead of faking sick like many are accused of, many people with chronic illness fake being well. Even the people who see us on a regular basis have no idea how much mental effort we put into organizing our illness and inconveniencing people as little as possible. Wouldn’t it be amazing if sick people didn’t feel like they had to pretend?
What people with chronic illness really want is to not have to fake being well Share on X
2. For boundaries to be respected
Most people with chronic illness have a general idea what will exacerbate it. They try to practice the art of pacing, but life and responsibilities often prevent them from doing so. Well meaning friends and family often don’t understand why people with chronic illness set up boundaries because they are not the ones who have to live with the result. Healthy people often don’t realize that no one wants to cancel plans. If only people with chronic illness had people in their lives who would listen when they say “no, I can’t do that because it will negatively affect my health.”
3. For people to realize that just because we look fine, doesn’t mean we really are fine
This one gets tangled up with the expectation that sick people should pretend to not be sick, and then when they are pretending to not be sick people decide that they must not actually be sick anymore. Most people with chronic illness can put a smile on their face and go out to have a good time, but inside they’re feeling like the pain or exhaustion is dragging them down. Sometimes they get to the point where they can no longer pretend they’re fine, and so they leave as to not bring others down. Sometimes this can be upsetting to healthy people, because they don’t understand how there can be something wrong when everyone was having a good time.
4. To have a doctor who listens
There’s a reason the controversial hashtag #doctorsaredickheads exists, and that is because the medical system fails most people with chronic pain, chronic illness, or just women in general (yay, sexism!). People with chronic pain are accused of being addicts, people with chronic illness are accused of faking, and women altogether are accused of being hysterical. For anyone who has any illness that goes beyond the basic, finding a doctor merely treats you as a human being is a win. Finding a doctor that actually listens and tries to help is even rarer.
5. To not be forgotten
I have a tendency to disappear when I’m really sick. I stop accepting invitations, I cancel previous plans, and I retreat into my house so as to not inconvenience other people with my failure to be healthy (to be clear, I don’t see it that way, but many healthy people do). My isolation is self imposed because no one in my life can understand what I’m going through, and many aren’t interested in trying. However, if a good friend notices they haven’t seen me in a while and thinks to check in, it means the world to me and helps to bring me out of my isolation.
6. For people not to assume, but to ask
This is one of my biggest frustrations as a person with a chronic illness that lives in a healthy world, surrounded by healthy people. Healthy people feel uncomfortable with illness and so they make assumptions about what I can or can’t do, which creates all sorts of problems. If someone asks me what I feel comfortable with I have no problem answering directly.
