The Worst Things I've Been Told as a Chronically Ill Young Woman
I've been chronically ill for five and a half years. At 22, that means 1/4 of my life has been spent being chronically ill. Sometimes, I feel like a pro at handling chronic illness, and other times, I struggle to cope and feel like I'm at the beginning. Chronic illness is a constant learning process.
I decided to write down some of the worst things I've been told in the past five and a half years, not because I want pity, but because I want to shed light on the way my body has become a topic of discussion by strangers, family members, friends, and doctors. Some of these comments came prior to my diagnoses, some after. These comments Brackets = implications not said aloud.
“You don’t LOOK sick??”
“C’mon, come with me and go out! [You felt fine yesterday why can’t you go out again today?]”
"[General remark about someone pretending to know my limits and my illnesses better than I do.]”
“If you pray hard you’ll be healed [from your incurable chronic conditions]!”
“When you’re ready to listen to me and my advice [even though I know nothing about your conditions], let me know.”
“Why don’t you try these antibiotics/probiotics/supplements?”
"I should probably get a cane but I REFUSE TO GET ONE. [Why are you being weak and using a mobility aid if I can go without one and you’re way younger than me?]”
...what?
“Oh, have you watched that movie where the girl was sick but God healed her? [Maybe if you pray hard enough that’ll be you, too.]”
“High school is a difficult time. Maybe you should stop seeing doctors and trying to find answers. [You aren’t sick and your mom is enabling you.]”
“You said you’re having fevers every night, why don’t you have your mom take your temperature rectally? [I don’t believe that you’re having fevers and even though you’re 17, you don’t know how to take your own temperature.]”
Are you serious with these ableist comments right now?
“We’ve done all the tests we can do. [Even though I’ve done a whopping two tests.] You should see a behavioral therapist [because young women are always anxious, it’s all in your head].”
Baby POTSy Emily (age 17) getting a pill cam endoscopy before going to take my midterm senior exams.
I would like to note that when I was diagnosed with POTS (postural orthostatic tachycardia syndrome, a type of dysautonomia), the doctor at the Mayo Clinic said I was basically the poster child of POTS because I was the typical patient (young woman, type A, very driven, suddenly became sick after a virus and had GI issues, tachycardia, fatigue, dizziness, etc.). 1 in 100 teens have POTS. I AM THE POSTER CHILD, and I was ignored by many doctors who were clueless and arrogant. Many friends, family members, and strangers knew nothing about this common condition.
It doesn’t matter if you’ve heard of the chronic illness your friend/family member has: believe them and trust that they know their body best. Strangers: don’t stare at someone with a mobility aid, don’t stare at a young person parking in a disabled spot who “seems healthy,” and know that no one owes you information about their personal health. If you’re close with the person who has a condition you don’t understand, look it up. While I am very open and willing to educate others, that is emotional labor disabled people aren’t obligated to perform, so if you’re curious, do some research. Most people will be appreciative that you have taken time to learn more about their condition(s).
What are some of the worst/most annoying comments you’ve heard as someone with chronic illness? If you’re able-bodied, what questions do you have, or have you considered the comments chronically ill people receive?