I often get questions from well meaning healthy people about what I want from them. I’m not great with words on the spot, so I thought I’d put a list of things I think people with chronic illness really want.
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 Click To Tweet
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.
Yes. It would be nice not to pretend but I am so use to my ‘facade’ not sure what I would do without it. I worked in customer service too long and had dickish doctors for too long… just used to minimizing and pretending to be all good. But when I am not faking it… well then… I am ‘focusing on it too much’, ‘talking about it too much’… ‘maybe if I thought about it less it would be better’… yeah it will magically go away if I never mention my illness to anyone every again.
I am used to the same, when you deal with the public it doesn’t seem like you have other options. It kills me when people say I’m focusing too much, it’s not like if I ignore my illness it will go away!
I love all of these, you’ve really hit each one perfectly. The invisible illness this is an ongoing battle when we ‘look’ fine, and I think resentment can build then, especially when we feel left behind in life or forgotten about by others. Not having to continually feel the need to explain myself, why I feel so bad, why I don’t do more than I do, or not having to put on a smile and push through pretending that I’m okay, would be such a relief. I imagine all of us would like just an inch of any of these things ♥
xx
Yes, I get so tired of explaining myself. It’s hard to confront the same issues over and over again
No. 3 is something that plays on my mind loads – I really wish people understand that our face doesn’t even tell 25% of the story – the fact that this is our life so we figure out ways around it. Sometimes I feel I expect too much if I believe others can connect when they haven’t experienced it so I try to let it go. Love the rest of the list, but this one hits me most.
Thank you for sharing this post. I feel truly understood right now! It is definitely not easy being chronically ill and pretending to be fine and well to avoid questions or fit in. I hope that you are going okay. I am sorry you have felt this way too but it’s nice to also know we’re not alone xx
Thanks so much Susie. I am okay, these are mostly old hurts that I’ve dealt with previously. I figured we’ve all had these feelings before.
Yes all of these are so relatable and very clearly put. Will defo be sharing this article as I feel like its really useful for people to actually realise.
Thanks Kat!
I agree with so much of this but especially #3 for sure! Great post.