People Who've Had Serious Misdiagnoses Are Revealing What Happened When They Saw A Doctor, And It's Absolutely Heartbreaking
Note: This post contains mentions of child loss.
Speaking up for yourself can be difficult, especially in a doctor's visit where it can feel like your own practitioner isn't listening to you.
The BuzzFeed Community recently shared stories of doctor's visits where they felt unheard, or even ignored, by their own practitioner. Here are just a few more of those stories:
1."Don't anyone dare laugh, but my 42-year-old sister has to bring my no-nonsense mother to appointments. My sister is non-confrontational and very shy, so she just takes what the doctor says. Oh no, not this time. She could possibly have breast cancer. They kept telling her she was crazy, it was in her head, lose weight, of course. We're also that kind of family: 'Pull up your shirt, let me see' (my mom's been in the medical field forever and was a mammographer after she quit IT) and my mom literally SAW the lump. She went with my sister and screamed bloody murder at the doctor. Now, they are running tests. This is all still very new, so we're waiting and taking her seriously because my mom doesn't mess around. We are 70% sure this could be a benign cyst (please cross all fingers, toes, and eyes for her!), as they do run in the family in us women, but still...why would you not take this seriously as a doctor? UGH."
2."This is not my personal experience but my best friend of 17 years started to feel run down and couldn't get enough sleep. She had a loss of appetite, mouth/jaw pain, red dots randomly appeared on her body, and sores on her tongue/all over her mouth. She finally went to urgent care, where the physician 'saw' her for a total of 30 seconds, prescribed antibiotics, asked no questions & sent her on her way. They made her feel like she was incompetent and useless, and I'm pretty sure the dehumanization stemmed mainly from the fact that she had no health insurance at the time."
"Several days later, her family and I convinced her to see someone else. This physician finally ran a blood test (at her and her mother's insistence) and knew immediately that something is very wrong. They told her to go home, pack a bag and head straight to the ER. Not even 12 hours later, she was diagnosed with AML and immediately admitted to the oncology floor to start chemotherapy. Since when is it acceptable for doctors to get away with completely disregarding their patience concerns when they literally vow to 'do no harm'? Great work, America."
3."When I was 11, I was taken to the doctor with really bad stomach pain. I was told it was period pain, not my appendix, as my dad suspected. I hadn't even started my period at that point. My dad took me to the hospital straight after anyway and I was rushed into surgery to remove my appendix before it burst."
—nevl
4."For four years every other month, I was having horrible pain from the right side by my ribs to my right hip, to the point of vomiting! The gynecologist told me it was PCOS, but never ran a single test, simply because I was 'obese for the BMI.' When I got a second opinion, that doctor got my gallbladder scan as soon as we could. It turns out that had been producing gallstones for years. The second doctor reported the first."
5."I was experiencing weird symptoms involving a sudden onset of severe vertigo and intermittent hearing loss. After my primary care doctor couldn't figure it out, he sent me to an ENT. The ENT ran some tests and then told me 'Good news, there is nothing wrong with you.' I broke down and said, 'Something IS wrong and I can't live like this.' His response was 'Symptoms are subjective.'"
"He also said, 'Maybe see a dentist because I had TMJ. I had already spoken to my dentist, who said that I had TMJ, but TMJ doesn't cause those symptoms. The ENT said that my dentist wasn't qualified enough. But since I wouldn't stop crying, he offhandedly said to see a neurologist. The neurologist did an MRI and found a brain tumor the size of a ping pong ball pressing on my ear. By the way, I had tried to see a neurologist the day I first experienced symptoms and got no one to listen to me to give me an appointment. I was also sent to an audiologist who got mad at me because my hearing was normal (at that moment)."
6."When I was around ten, I'd repeatedly dislocated my left knee and finally went to a doctor when the pain got too bad. He said that it was because I was walking wrong, then proceeded to dislocate it himself by pushing the kneecap to the side. I ended up bursting into tears and he dismissed it as 'little girls are always crying.' Over the course of five years, it would still dislocate easily on mild-moderate impact, and I couldn't bear anyone touching it. A few months ago, it began acting up so we went to another doctor (in a different state) and he ordered an MRI. Long story short, I need two surgeries to fix it, because the groove in my knee isn't deep enough and my ligament is entirely torn. All because the first doctor decided I was walking 'wrong.' You've got to love doctors."
7."I was told to exercise to help with my fatigue, joint pain, stomach issues, and headaches. The doctor even told me to 'start with small exercises while sitting down.' It turned out I have celiacs and it was my gluten intolerance that was giving me all those symptoms at once. It literally had nothing to do with my weight."
8."I had my symptoms of stomach and back pain dismissed by multiple doctors for two years. I was told I was overweight and needed to exercise and eat better. It turns out, it was stage 1 kidney cancer. As a doctor, your job is to listen to your patients and help them. Not project your biased assumptions on them. Had I not persisted and found a Nurse Practioner that actually listened to me and ordered tests, I wouldn't have caught my cancer until it was too late. You have to be your own advocate and not let someone brush your symptoms aside. You know your own body. Find a medical professional that listens to you. They are out there."
9."I was hospitalized with a severe case of pancreatitis after having several episodes of vomiting and pain. The doctor came into my room and said that my pancreatitis was caused by fatty liver. He didn’t even examine me or check my chart. I don’t eat dairy or fried foods, abuse alcohol, and rarely have sweets but was told that was the cause since I was obviously overweight. I immediately went on a diet and lost 30 lbs. in three months only to wind up back in a different hospital with pancreatitis again a few months later. When I asked if it was my liver, the doctor looked at me like I was crazy and said my liver was completely fine and healthy. I was experiencing a rare side effect of a medication I was taking for a different issue. The majority of doctors tend to diagnose fat instead of specific medical issues."
10."I recently did something to my knee, I'm not sure what. I went to urgent care who said it was just a sprain or something. I gave it a week and was still in pain. I talked to my PCP who ordered an x-ray, which showed basically nothing. I asked for an orthopedic doctor referral but she wouldn't budge. Thankfully, my insurance doesn't require referrals. I went to the doctor, who sucked the fluid out of my knee (80ml!) And it's been feeling much better after two weeks and PT. I can once again run, stand up from the ground without help and carry my kids again. If I hadn't just asked about and sought out an orthopedic doctor, I'd probably still be in constant pain."
11."I developed celiac after childbirth and my family doctor and everyone else in my life told me I need to relax and my chronic diarrhea (which led to extreme weight loss and fatigue) was from the stress of being a new mom. I kept telling everyone that I've had stress-related diarrhea before (from my chronic anxiety) and this wasn't it. Once I finally got my diagnosis, I wanted to throw the test results in my doctor's face."
12."My sister lost her baby when a doctor told her she just peed a little, when in fact her sac had a tear and lost over half the fluid. She was 17 weeks and had to have a procedure to remove the fetus. She went through the worst depression. She always wanted children and is childless now. There are procedures they could have done to help her instead of telling her she peed a little and sending her home. I'm glad she went to a different hospital later, and I told her to sue, but her depression hindered her for a long time."
13."When I was in my early 20s, I woke up one day with shooting nerve pain in one leg. It would come and go, but when I was feeling it, it was so intense that I couldn't put weight on my leg. After a few weeks, my roommates convinced me to see my doctor. I couldn't get an appointment with my normal doctor so I saw a new doctor at the practice. He didn't even look at me, told me it was muscle pain, and there was nothing to do about it."
"After several more weeks passed, again my roommates told me that I couldn't continue to live this way I should go see another doctor. I got an appointment this time to see my normal doctor who took an X-ray, told me he didn't see anything, but he would send it on to an orthopedist to take a look. That doctor took one look at my x-ray and told me that I had a bone tumor, and that I had to stop walking on my leg immediately. If I hadn't gotten treatment quickly, my upper femur would have broken right at the hip joint. They would have had to replace my hip."
14."I fainted and went to the hospital. I was told I had tonsillitis. What I actually had was a cardiac arrest but, you know, close."
15."My grandmother had a dry spot on her lip for like a year and a half. Her doctor said she was fine and to just put Vaseline on it. Finally after the year and a half, she asked for a referral because it wasn't going away. Her doctor rolled his eyes and sent her to a dermatologist. They took one look and referred her directly to a cancer doctor. Within days, she was having surgery to remove the cancer from her jaw. It had definitely spread way more than it should. She had to have two surgeries and get radiation. She's doing well now, just passed her fifth-year cancer-free, but it was an ordeal for sure. The original doctor tried to claim that she never brought it up (even though she brought it up on multiple appointments, which my mom was also there for) because he was too lazy to write it down."
16."Luckily mine wasn’t deadly, but still serious enough. I was four months pregnant and complaining to my male doctor about some pain I was having a few inches above my belly button. He brushed it off as gas and said it’s very common, and told me to take some gasX. It happened again a few times over the next few weeks and every time I was told that I was overreacting and to basically calm down and take some Tums. Well, one night I had the same pain and then it got worse and I was throwing up. It turns out it was gallstones and pancreatitis which landed me in the hospital for a week. Without treatment, people die of this, and he just brushed me off. I switched doctors while I was in the hospital."
17."There was the time I had an appendectomy and was in pain after surgery, while still in the hospital. They came in and lectured me about only wanting drugs. I'm allergic to opiates. I can't take most of the 'good' drugs anyway. I was in pain, I'd just had surgery!"
18."I talk about this everywhere because it's always important to remember that doctors don't know everything and many use only appearances to make a diagnosis. In 2020, I didn't have my period all year, I was lactating without being pregnant, my blood sugar was high and it didn't match my diet and I was gaining a lot of weight. In November 2020, I waited for the COVID cases to decrease a little in my country/city, and I started going to the doctor. Five doctors told me it was because I was fat and that if I lost weight, everything would improve. In 2021 I already had an eating disorder and was eating two or three times a week. The sixth doctor I went to listened to me and asked for specific tests. I have a pituitary tumor and that was what was screwing everything up."
19."I gave birth to my third child last year. I felt awful from week 36 on. I have a family history of preeclampsia and I had all the symptoms except the high BP. Mine was just slightly elevated. I kept asking for the protein urine test and they kept laughing it off. While in labor at 39 weeks, my BP got super high and it stayed 'slightly' elevated afterward but when I brought it up, they said it was minor and would go back down. I felt off and asked to stay in the hospital longer but they said there was no reason. They even stopped taking my vitals after 24 hours. They were 'just too busy' and 'sure I’d be fine.'"
"I went home and at two days PP, my BP went to 200/140. I had a seizure at home in front of my children and ended up in the ICU clinging to life and begging them to not let me die. It turns out that I had been developing preeclampsia in late pregnancy, it became serious in labor, and I’m one of the rare cases where birth didn’t "fix" it — and I needed serious IV meds for a week. I lost the ability to bond with my newborn, developed serious PPD and medical PTSD, and have a deep distrust of the medical field now that I’m working through. I’m terrified that I could have become a statistic of the many women who die postpartum or during birth."
20."A bunch of people on my mom's side of the family died of the same heart condition and [my mom] had open-heart surgery in 2006, where they replaced her valves. In 2010, she started getting sick a lot and was really cold all the time. She asked her cardiologist, but the doctors told her she was just getting old, and that happens. She kept going back to her cardiologist and they finally did a blood test and saw that she had a very low white cell count and bad anemia. They sent her to get blood transfusions and when those weren't working, she demanded they do an ultrasound of her heart because she knew something was wrong. Turns out one of the valves had a micro tear and she was bleeding internally for two years. The damage the tear did to her heart and her immune system was irreversible and she died a year later. Who knows what would have happened if they just did the heart ultrasound the first time she told them something was wrong?"
21."I was in my early 20s and had severe sharp pain in my abdomen. I went to the ER where the doctor did a very rough pelvic exam. When I said it hurt, he diagnosed me with pelvic inflammatory disease and told me it was an STD. I explained I had a single monogamous partner in my lifetime and the doctor shrugged and told me he must have cheated. I went to my PCP the next day and found out it was gallstones."
22."A year before the pandemic I had horrible pain in my mouth. My face was swollen to painful portions and I couldn't sleep. I asked my hubby to take me to a hospital. The male doctor on duty took one look at my swollen face and prescribed Tylenol and nothing else. I went to see my dentist, turns out it was an abscess tooth infection. She sent me to the hospital and I was put on an IV treatment for a week. I'm much better now thankfully but had I originally listened to that first doctor, I could've died cause all he saw was a female who was 'overreacting.'"
23."I was told I had a UTI when I presented to urgent care due to extreme-can't-even-breathe pain. Ended up being a tumor in my spine. The neurosurgeon who diagnosed me said he was shocked I could even walk with the tumor as big as it was."
—zemt
24."I had suffered a miscarriage and afterward suffered from extreme abdominal pain and irregular bleeding for over a year. Went to the ER multiple times and had several appointments with my gynecologist. Tons of money was spent for them to just say that everything was 'fine,' that I had 'low pain tolerance,' and that it was most likely due to my PCOS. FINALLY, after a year and a half, they scheduled emergency surgery right before COVID hit. I had three surgical procedures, 12 hours in the hospital, a D&C because the fetus hadn't fully left my body, a laparoscopy to clear excess scar tissue and to check for endometriosis and cancer, and chromotubation to remove the blockage from my Fallopian tubes. I was basically bedridden for three weeks and out of work for five weeks to heal. Needless to say, the pain is gone. I can't believe I had to suffer for that long to get what I needed."
25."I lost a significant amount of weight following the birth of my son. My OB congratulated me, not realizing that I was suffering from post-partum thyroiditis. He also refused to believe me when I told him that 'the baby is in me sideways.' He patted me 'First-time momma style' on the head and sent me on my way. It turned out I was right, and I had an emergency C-section with an occiput posterior presentation after 18 hours of labor."
