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…
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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.”
“Cue pregnancy: My body was able to give me two beautiful humans, but the pregnancy hormones broke me, and put my illness into overdrive. They caused my body to become ‘too loose.’ The tendons in my legs relaxed so much that during each pregnancy, my hips fully dislocated, and I was on crutches. My ankle frayed a loose tendon so much that I had to have my entire ankle and heel repaired. My wrist needed to be repaired after my ankle from using crutches for so long. In all, I’ve had eight surgeries just to repair my dislocated tendons.
It took me advocating for myself and asking for the deeper imaging diagnostics, as well as doing everything in my power to show my GP that not rest, not therapy, not physio, nor chiro nor massage was making me better. I was piecing together things from the past, like genetic testing for Marfan syndrome, and seeking national specialists for differential diagnoses.
It wasn’t until a doctor examined my wrist and saw how much it was moving that he said, ‘Do you have Ehlers-Danlos syndrome?’ After that, I refused to leave my GP’s office until I was referred to a specialist to help give me a clinical diagnosis. I finally got the diagnosis of Hypermobile Ehlers-Danlos syndrome, which meant I wasn’t making it up. It’s incurable and hard to manage, but it’s my new normal.
Don’t ever give up on yourself!”
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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.”
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“While my family was deciding which specialist to use, we visited Stanford. They barely paid any attention to us or the test results and said I was completely healthy. I was excited to take off the annoying tube, but my mom made me keep it, and we never went back to Stanford again.
Most kids with severe pulmonary hypertension never even get diagnosed; they just run out of oxygen when active and die. I made it to adulthood because my mom was smarter than Stanford.”
—Anonymous, 26, USA
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.”
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“Two years later, when I finally convinced my parents to take me to a heart specialist, the doctor told me: ‘You know when you see a cute boy and your heart beats really fast? That’s called anxiety.’ In order to ‘ease my worries,’ they hooked me up to a home heart monitor for two months. Turns out I had supraventricular tachycardia.
When I was 16, I underwent a six-hour closed-heart surgery to remove two extra AV nodes on my heart that were causing it to pump at over 200 bpm. The whole experience left me with a resting heart rate of 100 bpm and difficulty exercising.
The good news is that the experience taught me to advocate for myself, and I was finally able to get a diagnosis for my chronic neck pain that led to brain and cervical spine surgery eight days after my 20th birthday for Chiari malformation.
Most of my physical scars have healed, but the delay and initial denial of necessary and serious medical care have left me with extreme health anxiety and lasting chronic pain, along with two autoimmune disorders triggered by having surgery.”
—Anonymous, 24, Seattle
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.”
“One time, I did swallow a whole chunk of pineapple, and I ended up in the ER. My esophagus swelled so badly that I couldn’t swallow my saliva for an hour. Every time I mentioned it to a doctor, including the one ER trip, they told me I must have a hernia or cancer. When I told them that I could identify the foods that triggered it, they insisted that it was all in my head.
I had so many doctors recommend an endoscopy because they believed there had to be something growing in my digestive system. I knew they were wrong, so I never went through with the testing.
I put two and two together and figured out it was some kind of allergy, and eventually found an amazing allergist who confirmed it. I have oral allergy syndrome. My immune system confuses some plant and animal proteins for pollen, molds, and dander. It then tries to attack the food as I’m digesting it. I didn’t need a scope or invasive testing like those other doctors told me. I needed allergy shots. Now, I’m good unless I get really stressed.”
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.”
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“In 2019, I had to have a 13 cm benign tumor removed from my liver. After surgery, I was put back on the blood thinners I was already taking. They failed two days after I was discharged from the hospital, and I had a heart attack at home. I ended up in the ER, and despite the horrible chest pain, my autoimmune disease, clotting history, and having surgery a week prior, the ER doctor didn’t run the heart attack protocol, which includes blood work.
Nothing they did for my pain helped. I was admitted back into the hospital due to high white blood cells. It wasn’t until then that my nurse noticed no blood work had been done to check me for a heart attack. He called my surgeon and had the blood work ordered..
Within an hour, several nurses invaded my room, shoved pills in my mouth, and told me that I was actively having a heart attack and needed to be rushed to the cardiac cath lab. My troponin level, which should’ve been under 14, was 874. I have permanent cardiac damage, and I’m almost certain that the ER doctor was fired immediately after. Apparently, she thought I had an infection because of my white blood cell counts, and they were pumping me full of super-strong antibiotics for no reason.”
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.”
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“Then the symptoms started to get REALLY weird: olfactory hallucinations, what I thought were auditory hallucinations of rushing water, sudden double-vision out of nowhere, and other random things that aren’t supposed to happen with migraines. All the while, the headaches were getting more frequent and MUCH more painful, and they were occurring any time I bent over, every morning when I got home, and whenever I did something that affected the pressure in my head (like blowing up balloons, or going into deep water). Still, my doctors told me they were just migraines.
Finally, when I was 24, I had to see a new doctor in order to get a work visa to join a circus in Spain, and he immediately clocked my symptoms as extremely unusual and ordered an immediate MRI. Turns out, I had a brain tumor! And if it had kept growing for another year, it would likely have crushed parts of my brain stem and killed me.
I had surgery, and the tumor headaches went away, but apparently, I do suffer from chronic migraines as well. One neurologist told me I was ‘neurologically unlucky,’ which I never expected to hear.
If that one doctor hadn’t actually listened to me and taken my symptoms seriously, I likely would have died 13 years ago. It took roughly 11 years for anyone in the medical profession to investigate what was happening to me. There was absolutely no reason for me to have suffered that much pain for that long.”
—Anonymous, 30-something, Los Angeles, CA
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.”
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.”
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“It wasn’t until the entire left side of my body went completely numb that I was properly diagnosed with multiple sclerosis, which was an ordeal in itself. First, my primary care clinic lied (as I later discovered) and told me they didn’t do walk-ins, so I waited six weeks for an appointment. Then, when the doctor asked me what I wanted her to do, I suggested an MRI, yet she refused and told me to go to the VA ER. I underwent many tests and three failed spinal taps. The first two were regular attempts that were unable to penetrate through the massive scar tissue from the spinal surgery.
On my third attempt, I was sent to the radiology department. They laid me down for an hour and would insert the needle, take an X-ray, move the needle, take another X-ray, and repeat. It was a very painful ordeal, and it still failed.
Once I finally got some results, I was diagnosed with MS. I said, ‘At least it’s not cancer,’ and the doctor patted my knee and said, ‘No, you would have been better off with cancer; we could have cured that. MS is incurable and only gets worse.’
The prognosis was that I would be in a wheelchair within five years. Thirteen years later, and I’m still walking, though I do need to use a cane and a walker sometimes.”
Note: Some responses have been edited for length and/or clarity.
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