I’ve had so many terrible things said to me because of my chronic illness.
“It is your fault you feel like this.”
“If you try hard enough/ do more you won’t still be sick.”
“If you just prayed harder god wouldn’t still let you be sick.”
Needless to say, chronic illness has made for a difficult and painful few years.
Unfortunately, these comments never stop. Every time I think I have finally surrounded myself with supportive people they say something hurtful that proves they don’t understand my chronic illness one bit. I can’t help but wonder if I will ever find someone who really truly gets it. Maybe it isn’t entirely possible to understand chronic illness unless you’ve been in the shoes of someone with a chronic illness.
One of the most recent comments came from a friend and roommate I thought cared about me. She insisted that “she had talked to other disabled people and they agreed you should do more.” According to her, if I was trying hard enough I would have asked her for more help. There are problems on so many levels here.
1. You’re Supposed to Believe Me
Firstly, and most importantly, it is so damaging to not trust people when they tell you what they physically can and can’t do. It has taken me 7 years to figure out what I can and can’t do and semi-effectively communicate to those and my boundaries around me. Communicating these things leaves me in such a vulnerable place- to judgment, disbelief, or criticism. I hate it, but I have to go out on a ledge with people when I tell them what I can and can’t do with my chronic illness.
I recently saw the quote in reference to Ehler’s Danlos, “The cruelest symptom is disbelief by doctors.” I will go a step farther and say disbelief by anyone is the cruelest symptom. The physical pain of dislocating joints, debilitating headaches, and the struggles of constant fainting are unimaginable. However, these physical pains don’t compare to the pain of the people you need most in your corner not believing you when you say you are struggling.
All the experts on my conditions agree that they are seriously debilitating. Still, I am constantly having to simultaneously prove how sick I am and fake feeling well.
My experience has taught me that chronic pain and chronic illness can’t be survived without an understanding support network. Nothing affects my ability to fight for a normal life more than having a support network who truly listens to and believes me. Needing to be heard, especially in the face of pain, is a human need.
2. Every Disability is Different
While being someone who deals with a chronic illness makes me more likely to understand other disabled people’s struggles than a healthy person is, I cannot understand the day to day struggles of other’s conditions.
I have never had Lupus. I don’t know what it feels like to wake up with Lupus, to shower, to cook, to eat, to clean, to sleep, or to try to hold a job/stay in school. All I know is that for people with chronic illnesses that these things are likely to be affected. It isn’t my place and I don’t have the knowledge or expertise to comment on whether people with Lupus need to “do more” or “try harder.”
It baffles me that my roommate talked about my disability with other disabled people and that they felt like how I was dealing with my disability was something that they were qualified to comment on. People with disabilities should be supporting each other, not making each other’s lives harder.
There is this attitude within people with disabilities that if they can do something everyone should be able to. Work and school are great examples. People who are able to work/ go to school act like the rest of us just aren’t trying hard enough- after all, they are able to do it. Why can’t we? They forget we are all different.
3. The Same Disabilities Affect People Differently
I have a moderately severe case of POTS. I have met people who were hardly affected by POTS and who could work full time. I have also met people with POTS who are literally unable to get out of bed. These people aren’t slackers. People who are able to work full time with POTS are not better because they “do more.” They just are affected differently by the same condition. We are all just doing the best we can with the cards we were dealt. Doing your best means we literally can’t do more.
POTS makes me faint. EDS cause frequent dislocations and constant joint pain. As far as I’m concerned, people who never faint don’t get to comment about me needing to “do more.” Neither do people who don’t have my daily dislocations, my severe arthritis, or my spinal injury. Unless you are in my terrible body living my difficult life please do shut up.
I try not to judge how other people are managing their conditions. There is no reason we should be making these judgments about each other to condemn us and our efforts as “not good enough.” I have never met someone with a chronic illness who wasn’t fighting as hard as they could for a better life. We are all trying. Don’t perpetuate the idea that we aren’t and can do more. We are doing all we can.
4. If You Aren’t Understanding I’m Not Going To Ask You For Help
The comment that she had “talked to other disabled people and they agreed I needed to do more” wasn’t the first time my roommate had said something not supportive of my chronic illness. I’ve had enough unsupportive people in my life to watch for signs that people don’t really get my chronic illness and she was showing a bunch of the signs.
I tried to explain to my roommate that I didn’t feel comfortable asking her for help because she made these unsupportive comments. She took that as me not trying hard enough.
I don’t ask for help from people who seem like they will later resent me for it or hold it over my head. I refuse to apologize for keeping myself from being hurt by these people.
5. My Disability is Personal
My disability is not yours to talk about. Not to other disabled people, not to anyone. Symptoms are personal and the struggle I have with them is incredibly personal too.
Would you want people you don’t know discussing how you managed the darkest moment or hardest struggle of your life?
How would it feel to hear an in depth critique on how you dealt with the worst parts of your life?
How would it feel if every time you met or interacted with a common acquaintance or new person you would always wonder if they knew intimate details about the worst parts of your life?
How would it feel to always wonder each and every time you interacted with a disabled person if they are the one who judged you as “needing to do more?”
Imagining complete strangers critiquing how I am dealing with my conditions makes me wildly uncomfortable. It is hurtful to think that anyone thinks this acceptable. It is painful to realize that because I have a disability, people I love don’t value my privacy.
How my disability affects you is fair game to talk about. That is the only part of my disability you get to talk about; it is about your experience. Even in these situations, details of my disability are not fair game. There is no reason they need to be talked about with people I don’t know. You can seek support without selling me out.
If you are disabled you don’t deserve these comments. If these ignorant people knew a fraction of your daily struggle they would never claim you need to do more.
You deserve more supportive and understanding people than people who say these things. So do I. So one more thing to my roommate people who say these ignorant things: