People With Chronic Illnesses Are Revealing The Times When A Doctor’s Misdiagnosis Could Have Turned Deadly, And I Have No Words
“I have permanent cardiac damage, and I’m almost certain that the ER doctor was fired immediately after…”
On average, it takes 7.6 years for someone with a chronic illness to receive a proper diagnosis. However, throughout their medical journey, many chronically ill individuals are belittled, dismissed, and oftentimes misdiagnosed by doctors…
That’s why when I recently asked chronically ill members of the BuzzFeed Community to share a misdiagnosis they received that could have turned dangerous, I received dozens of heartbreaking responses. From long COVID to MS, here are 17 of their most shocking stories:
If you have a chronic illness and have ever been dismissed or misdiagnosed by a doctor, feel free to tell us about it using this anonymous form!
1. “I’m in my mid-40s and just received my chronic illness diagnosis: Growing up, I was a long, lanky kid who was ‘accident-prone’ but enjoyed playing sports. I had multiple rolled ankles and sore knees. I even had to wear a knee brace during my growth spurts. I had party tricks where I could bend my limbs and contort myself. I never had an issue with flexibility and found yoga to be enjoyable. I loved being active, even with the occasional tweak of a joint now and then.”
2. “I had, what we thought, was terrible postpartum depression — nothing helped. Over a three-year period, I was on every antidepressant available and some that were still in trial stages. Despite having other symptoms, my doctor assured me it was just severe postpartum depression and recommended I undergo electroconvulsive therapy (ECT).”
“I decided to get another opinion, and had to pay out of pocket because my insurance wouldn’t approve a referral. The first thing the new doctor did was order a blood test. Turns out, I had Hashimoto’s and hypothyroidism, and I eventually had to have a complete thyroidectomy.
I had over 30 appointments with my previous doctor, and not once did she consider testing my thyroid.”
—Anonymous, 51, Olympia, WA
3. “I got COVID in 2021, and the NHS diagnosed me with anxiety. I could not take warm baths without shaking or drink caffeine without having a panic attack. I visited a friend in Mexico to relax for two months, and they took me to their family doctor, who ran some tests and finally diagnosed me with long COVID.”
“My nervous system had been deeply affected by it, and it was brushed off as anxiety. I keep in touch with the team that helped me in Mexico, and I am still in treatment four years later.”
—Anonymous, 27, UK
4. “I was diagnosed with severe pulmonary hypertension as a kid after my tonsils were removed because my oxygen levels never improved after I woke up. I needed oxygen constantly; without it, my lips would turn blue from simply walking across the hall to the bathroom.”
5. “I was misdiagnosed with type 2 diabetes. I changed how I ate, exercised more, and took my medication as directed, but my blood sugar stayed high for years, and I couldn’t lose weight no matter how hard I tried. I changed doctors a few times, trying to get answers, but they just assumed that I was lying about all the work I put in. I was sent to a nutritionist twice, and they both assumed I was being dishonest as well.”
“I finally went into diabetic ketoacidosis and nearly died. Only then did they run a simple blood test that showed I actually have type 1 diabetes.
My doctors’ assumptions nearly killed me.”
—Anonymous, 40, MA
6. “I’ve always had horrible, painful periods, yet my doctor always brushed off PCOS. At the age of 32, I decided not to take my gynecologist’s advice anymore, as they were telling me everything was fine. I had yet another ultrasound done, and my doctor said, ‘There’s nothing I see of significance,’ but my gut told me otherwise.”
“So, I asked to see the written report on my ultrasound. On the second page, at the top, it read: ‘Patient ovaries consistent with PCOS.’ My doctor was too lazy to read the second page!
Soon after switching doctors, I also found out I had a tipped uterus and adenomyosis (the lesser-known counterpart to endometriosis). It took a village to get me pregnant again later that year, and I still feel I was lucky considering the odds.”
—Anonymous, 48, Chicago
7. “I was 12 years old, in French class, laughing with my friends when, out of nowhere, it felt like someone was taking a jackhammer to my heart. I immediately leaned forward, held my breath, and silently prayed that no one would notice my distress, because I had been dismissed enough times in the past and was afraid to speak up.”
8. “I have suffered for years with unexplained weakness, intolerance to heat, difficulty swallowing, vitamin D and iron deficiency, coordination issues, and double vision. I saw multiple doctors who told me that I was ‘fine’ and that I should ‘just take vitamins’ and ‘eat more.'”
“I underwent a series of tests and scans, and finally, four years ago, a doctor diagnosed me with seronegative myasthenia gravis. She gave me medication for it, and I felt like a new person, although my vision has never recovered, and the MG has since worsened.
Now, my doctor has retired, and my new doctor is ‘unsure’ of the diagnosis, so I have to deal with this nonsense all over again while I feel 10 times worse.”
—Anonymous
9. “I was diagnosed with Crohn’s disease in 2015 after over a year of significant pain and major GI problems. I was hospitalized more than once during this year and was referred to a GI doctor in my area. He gave me several reasons for the immense pain I was in: First was that my seat belt probably flung back and hit me, causing a bruise (I didn’t have any bruising). When I told him it was not just pain but that I was also physically sick after eating, he said, ‘Well, eat less pizza and drink less beer, and you’ll be fine.’ It was almost every meal, but sure.”
“He referred me for an endoscopy, told me that nothing was wrong, and that sometimes people just have abdominal pain.
After many months of trying to be taken seriously, I switched doctors. With only one test, the new doctor diagnosed me with moderate to severe Crohn’s disease and began a treatment plan that had me in remission within a year. I still manage my Crohn’s with the treatment plan he started a decade ago. When I left that area, I wish I could’ve brought him with me.
That first doctor, though, fully dismissed my pain as the naive ranting of a ‘girl’ in her 20s. I’ve never felt so belittled by someone who was supposed to be a caregiver.”
—Anonymous, 38, Buffalo, NY
10. “I went through 15 years of misdiagnoses before I ended up semi-diagnosing myself. Whenever I ate certain foods, usually fruits, veggies, and rice, my throat and esophagus would swell. My gums would sometimes itch, too. It was nothing dangerous — just uncomfortable and sometimes painful.”
11. “I spent five years pursuing a diagnosis for back and joint pain, along with high inflammatory markers. My first rheumatologist told me I was overweight and had allergies. I became extremely self-conscious after that and started to doubt myself. I thought the pain was all in my head.”
“It took the combined effort of four doctors over the span of five years to come to the diagnosis of ankylosing spondylitis. When I finally got the diagnosis, I cried tears of joy. Someone finally listened to me and validated that this wasn’t just in my head.
It took some trial and error, but I am finally on medications that work for me, and I have a much better quality of life.”
—Anonymous
12. “When I was in my early twenties, I kept having severe abdominal pain. I visited several gynecologists, who told me that everything was normal — one even recommended that I see a psychiatrist to deal with the problem.”
“Finally, I went to a gynecologist who recommended a urologist. That’s when I found out I had interstitial cystitis, and I was able to get a spinal cord stimulator put in to help control the pain.
Knowing what’s wrong (and knowing that it’s not all in my head) definitely helps. If one doctor dismisses you, find another!”
—Kim, Orlando
13. “I have an autoimmune disease called antiphospholipid syndrome, which causes my blood to clot too easily. Before I was diagnosed with it in 2017, I had multiple pulmonary embolisms. I also had my first DVT at 19 years old in 2006 because, unbeknownst to me at the time, I had a genetic blood-clotting disorder and had started birth control.”
14. “Ulcerative colitis sufferer here: I’ve been in and out of the hospital, ER, and OR many times for various complications, including intestinal blockages and twisting. Because of malnutrition, I was severely underweight and in constant pain. One time, I went into the ER in severe pain when the doctors took my medical history and asked what had helped my pain in the past. I remembered the name of the drug the ER gave me the last time, so I shared it with them.”
“Come to find out, they put in my chart that I have ‘drug-seeking tendencies’ and I was labeled with that for every subsequent visit. You get to know a lot about your body, what works (and doesn’t work), and medical terms from all the visits to the hospital with a chronic illness. That doesn’t mean we are all addicted!”
—Anonymous, 33, Raleigh, NC
15. “I spent years dealing with chronic headaches that were diagnosed as migraines, despite the fact that the majority of them didn’t respond to any migraine medications I was given. But I was repeatedly told that it was no big deal, that plenty of women experience chronic migraine, that it was probably to do with my hormones, etc.”
16. “I kept having migraines that were so bad I couldn’t even see out of my left eye, and I would have to go into a completely dark room. Several years ago, I was bitten by a tick, and my doctor gave me the standard antibiotics and ordered a blood draw.”
“A decade passed, and nothing more was said about it. A year later, I began experiencing severe flulike symptoms and was passing out and falling down. Come to find out I have chronic Lyme disease, myalgic encephalomyelitis, and fibromyalgia.
Five doctors later, and I finally have some answers. Dealing with Lyme disease and taking antibiotics all the time is still a struggle. I am currently receiving massages and acupuncture, and it seems to help when there are no flare-ups present.”
—grumpytraveler465
17. Lastly, “A couple of months after having emergency spinal surgery, in a civilian hospital, I began experiencing dizziness, balance issues, chronic fatigue, exhaustion, inability to focus, etc. The medical professionals at the VA — the same people who refused to do an MRI on my back and declared that I simply had sciatica — decided I was suffering from depression. For eight years, they gave me every antidepressant, yet none of them worked.”
Note: Some responses have been edited for length and/or clarity.