people have no idea what its like to be 14 and have everyone telling you that you’re faking and pretending to be ill for attention or to skip art class and the doctor’s telling you you’re ‘just being a teenager’ when you actually had a serious kidney disease
if someone hadn’t eventually listened to me i would have died
Please, please support self-diagnosed teenagers, don’t pretend they’re not really disabled, don’t belittle or mock them, don’t exclude them from disabled spaces and for the love of god don’t pretend you know more about them than they do
i am disabled to this day because when i was a teenage girl, my doctors didn’t take me seriously. when i said i was in extreme pain, they said i just wasn’t trying hard enough at physical therapy to repair a broken ankle. turns out they’d fucked up the surgery to fix it, and their neglect of my months of complaints meant it was damaged beyond repair. i still have mobility issues 8 years later, will have pain and require surgeries throughout my life and will, always, be disabled. because of them. because of the silencing of girls’ voices, in all spheres. because doctors do not value the voices of teenaged girls.
When I was twelve, the knee specialist I had finally convinced my mom to take me to (after years of begging) told me that my knees hurt because of my hips widening.
“No,” I said. “You don’t understand. I can’t walk when it happens, it hurts so bad. It’s been since I was a little kid.”
“It might twinge a bit, sure,” he told me. “Go to physical therapy for a few weeks.” I burst into tears.
My mom then refused to take me to physical therapy, because it was a long drive and the doctor said it wasn’t serious, so why should she bother? That was the start of her not listening to any complaint about my joints I ever had.
As it turns out, my knees were dislocating every couple of days. She and my doctors ignored and taught me to ignore sprains, fractures, cartilage tears, and dislocations until I moved out and learned that it wasn’t normal. I missed out on years of my life because of my doctor not only discounting the experience of a young girl, but fully blaming my pain on the fact of my being a young girl.
Listen to children when they tell you something is wrong with their bodies.
I had stomach pains for years as a kid. Almost daily. I was blamed as a faker.
I have Celiac.
People know what the hell is going on with their own bodies. If they don’t think something is right fucking listen to them.
When I was 11 I started getting really bad jerks in the morning. They started as twitches and gradually advanced into jerks where I would lose control of my limbs – I threw shampoo bottles while holding them, fell down in the shower, etc. My doctor told me they were just “morning twitches”, and lots of people get them.
They got worse to where my whole body would shake and I would fall down. I would lose periods of consciousness during the day where I’d stare off into nothing and forget what’s happening. A few times I even woke up disoriented and confused only to realize I also wet the bed. At age 15.
My doctor told me none of the symptoms were related, it was just stress, go to the bathroom before bed, and to get more sleep. He never once saw me for more than 15 minutes or offered to do any sort of testing.
One morning I had a seizure in the shower that resulted in a concussion, a scar up my back from hitting the faucet while falling down, and near drowning because my head blocked the drain. I would have died if my little brother didn’t find me.
Five years after I first complained to my doctor I was diagnosed with epilepsy. It took a near-death experience to get anyone to take my condition seriously. Fuck people who don’t listen to kids and disregard teenage girls as “making up symptoms”.
When I was 5 I had an incredible pain in my chest. I was five. A child. And my mom brought me to the hospital. My mom was a doctor. She’s currently the head of a large department at a local hospital, and one of the most respected endocrinologists nationwide. She told the doctor I might have a heart issue, right? Since, you know, she’s a doctor and knows these things. She told the doctor to get me a CAT scan. The doctor had this diagnosis: I was a drama queen, and my mom had anxiety disorder.
My mom’s not the kind of person who gives up though. She kept taking me back to the hospital. They finally diagnosed me with pneumonia, since I couldn’t breathe. My mom was not happy with this diagnosis. They put me on pneumonia meds and I still didn’t recover. My mom insisted she heard a “rub”, and the doctor said FINE, he said WE’LL TAKE HER TO GET A CAT SCAN just to make her shut up. They just wanted her, an MD, to shut up.
The CAT scan came back and I had over a liter of pericardial fluid around my heart. There was a soda-bottle-sized balloon around the heart of a five year old. That’s the reason I couldn’t breathe. I was finally diagnosed with pericarditis, inflammation of the lining around the heart (the pericardium).
I would have been dead had it not been for my mother’s persistence in the face of a doctor that refused to trust an MD simply because she was a woman.
Look at how many of these stories are on this post. They don’t stop devaluing our experiences when we grow up. Nor when we get medical degrees.
When I was 14, I had injured my ankle while roundhouse kicking a metal bunkbed while asleep (I’m quite… active of a sleepwalker). It hurt like crazy, but my mother thought that I had just sprained my ankle. So, we wrapped it up in an ace bandage and off to school I went. A day or so later was my first PE class of high school, where the teacher (also a school nurse) generally didn’t believe me that my ankle was messed up. Days turned into a couple of weeks and she finally flat out told me that I was a liar and if I didn’t run laps like everyone else, I’d immediately fail the class.
Have you ever run on a ruptured achilles’ tendon? Because I have! I lasted about half a lap before breaking down in extreme pain. I ended up in a cast for the rest of the school year as a result of making it worse, and my ankles (plural, since I needed to compensate with the other) are terrible even today.
That doesn’t even get in to the whole ‘school nurse deciding that I was a druggie and not letting me take medication’ bit. Again, these are nurses – trained professionals deciding that a teenager is obviously lying about being in pain.