My Experience with Ableism and Medical Trauma
I’ve visited countless specialists over the last 23 years.
From Vanderbilt to UAB to HudsonAlpha’s Smith Family Clinic, doctors have poked and prodded my entire body. But while some tests were uncomfortable, you know what hurt more? The doctor’s words.
I’ve had some good doctors, but I’ve also had my fair share of bad ones— and their words wounded me deeply.
It’s been a journey to process what’s true and what isn’t, but I think I’m finally ready to share some of these comments with all of you. Buckle up, it’s a bumpy ride.
“Abbey, there’s nothing wrong. All of your tests came back great. The pain is probably just in your head.”
This was said after I got multiple CAT/MRI scans on my brain. I was in the 5th grade, unable to breathe in my sleep.
No one knows why I stopped breathing. I even took a sleep test that came back normal. My doctors just didn’t want to explore it further. Most of the time, they thought my mother and I were exaggerating how bad it was.
“You’re just constipated.”
Emergency room doctors told me this when I had such severe abdominal pain I couldn’t walk up the stairs to my own room. I threw up every single thing I ate.
Soon after, I went back to the hospital and had a scan that determined my gallbladder had negative functioning. The day after I got the results, I was admitted to the hospital and had my gallbladder removed early the next morning.
“Back again? I guess you really hate school.”
I got this one a lot. Doctors thought it would be a funny way to break the ice, but in reality, it just made me feel worse. I always doubted how serious my problems were because of this.
“Knees dislocating all the time is normal. It’s just a part of growing.”
I had a pediatric orthopedic surgeon tell me at 12 years old that it was normal that my knees dislocated all the time.
To this day, I’m still upset by this. If he looked closer, maybe I would’ve been diagnosed with EDS sooner.
“I’m not giving you an MRI until it’s a life-or-death circumstance.”
This is the same orthopedic as above. I had a grade-three ankle sprain which basically meant all of my ankle ligaments were shredded. The only thing he did was put me in a cast.
Months later, I was still in pain. My mother and I went back and asked for an MRI. I don’t know why, but he took offense to this.
Funny enough, that MRI would’ve saved years of pain. At 15, we found out the pain in my ankle was there because my entire arch fell from the injury.
I spent my freshman year of high school recovering from one of the most invasive ankle surgeries possible.
“Have you tried taking a bath and drinking more water?”
I know this suggestion isn’t meant to be hurtful, but when you’re dealing with chronic pain, it cuts deep. No amount of “self care” is going to make me healthy.
In fact, I drink 100+ oz of water a day due to my POTS. So trust me, I am drinking enough water. That’s not the problem.
As for breaks, there are many nights and days I can’t see people. My body shuts down at least once or twice a week.
At first, I’d ignore it and continue on with my plans. Now, I listen to my body and reschedule plans when I need to rest.
I truly am doing everything in my power to stop my symptoms, but my disorders are chronic for a reason. There will never be a time where I “feel better.”
My best still has sprinkles of pain and symptoms throughout the day. The only difference is that I’m so used to a moderate level of pain that it won’t completely ruin my day.
“Abbey, I don’t know how to help you. There’s nothing I can do.”
This was soul crushing. I’d literally cry in doctor’s offices when this was said to me.
I had a back surgery at 19 that was supposed to be a breeze. Instead, I was bedridden for two months, unable to walk or sit. When I went back to my doctor for help, they had no idea how to help me.
I just had to ride out my overreactive body and wait for it to get better. I will never forget how much agony I was in. I couldn’t even sit on the toilet without sobbing from pain. It was horrible.
“Your back is worse and never got better.”
Before my back surgery, I did three years of physical therapy.
Want to know something? All of my hard work made the problem worse. My lumbar discs were still degenerating before my eyes.
“You’re too young to have all of these surgeries. I don’t want to make you ugly with more scars.”
This comment makes me so uncomfortable. When a doctor says I’m “too pretty” or “too young” to go through this, I want to walk out of the room.
Yeah, I may be too young for all of these problems if I was normal, but I’m not. I am different, and my body needs extra care and procedures to live.
“Stop worrying about that. You don’t and won’t get cancer; just go to college and enjoy yourself.”
This is still so ironic. My old pediatrician said this when I had just graduated high school. This was the first time I found a ginormous lymph node on the side of my neck.
While that specific lump wasn’t cancer, I did develop cancer only a few years after that.
Yes, I should enjoy my youth and have fun, but I still need to worry about my health 24/7. If I didn’t I’d probably be dead or have stage four cancer.
“Do you know what psychosis is?”
I remember my mom’s face when this was said. I was only a kid, and this was their way of saying that every symptom I have isn’t real.
One of the most common experiences for people with invisible illness is that all of your tests come back normal. It’s incredibly frustrating and defeating; you’ll question every sensation you feel.
By 10, I started ignoring my pain because I knew I wouldn’t get help. No child should feel like that.
“I don’t know why you are here— don’t schedule a follow-up.”
I was instructed to get a rheumatologist after my EDS diagnosis. So, my mother and I traveled to Birmingham to see one at the beginning of college.
When I got there, the doctor looked me up and down and asked me why I was here. She dismissed everything I said and told me I was fine.
To make it even better, she prescribed me medication I was deathly allergic to. When my mom told her I couldn’t take it, she said “Oh I bet your reaction isn’t that bad.”
I never went back.
“Every teenager is this tired. It’s normal.”
So many nurses and doctors laughed about me being severely tired. I couldn’t wake up, and every morning got worse.
No one ever ordered a thyroid blood test, and I went decades without medicine. I didn’t even know I had a thyroid autoimmune disorder until I was 19. And we all know how that ended up; cancer followed not too far behind.
“You should really be better by now. I don’t want to give you another school excuse.”
When I had surgery, it took me an abnormally long time to recover. We had no idea that the extended time was due to an undiagnosed connective tissue disorder.
So, whenever I had surgeries, I never felt better when I was supposed to. Many doctors thought I had a low pain tolerance. If you know me, you know that’s far from the truth.
Yes, these experiences were terrible. But while there are many dismissive experts, I’ve found a handful of amazing doctors along the way. Right now, I have the best primary care and specialist team that listens to every concern. It took me a while to get here, but I’m grateful to finally trust certain medical experts.
I hope this post shows you lovely readers that it is more than okay to get a second opinion. If you feel like something is wrong, get help. Invisible, chronic illnesses hide in the shadows.
Some doctors won’t want to do the extra work because your problem isn’t a “textbook answer.” Remember: just because you don’t fit the medical mold doesn’t mean you have to live in confusion.
I mean, that’s why people with EDS are known as zebras. When you hear something galloping behind you, you’ll probably think it’s a horse. But once you turn around, you realize it’s a zebra.
We’re the unexpected. Find doctors who work towards finding your differences; you deserve nothing less.
Sincerely, Abbey