When we go to the doctor, we want to be believed. Unfortunately, it doesn’t always happen. Doctors, though highly educated, can have biases that lead them to draw wrong conclusion, which can mean patients’ symptoms get misdiagnosed or dismissed.
These Redditors share their stories of when their doctor didn’t believe they had a medical condition:
1. Still not believed
When I was a child my pediatrician knew and had proof of part of my medical conditions. Specifically rotoscoliosis that forms into deformed ribs crushing my left lung (it doesn’t fully expand). She chose to not tell us. Eventually my mom started to really think twice because I always complained about my back hurting. She ended up making an appointment with a different pediatrician, he took x-rays. When we meet with him after the x-ray’s he told us that he couldn’t do anything that it was out of his experience. He explained it the best he could but sent us an immediate referral to someone else. We met with the new doctor, showed him the previous x-rays, he literally laughed at us. Said there was NO way these were right because I wouldn’t be alive or at the very least not walking. He was so sure we were wrong he ordered his own tests, an MRI. Once we did that, he personally called us, not his nurse or receptionist. He called us and apologized. He was in disbelief that I had so much going on and still walking around like a normal kid. Unfortunately for me by the time it was all found out my rotoscoliosis had gone past the point of help. This happened when I was (8-9 years old). I’m now 23 years old, who they didn’t even think I would live this long. To this day it doesn’t matter what I tell the doctors they don’t believe how bad it is until they see it for themselves. I went to the ER recently and they did chest x-rays. I tried to tell them beforehand my medical conditions so they wouldn’t fre*k out. They dismissed me then I’m standing there after they take the first one. I hear them saying, Oh My God, did you see this. Look at her spine. The doctor in ER said well your xrays look fine other than, some uh bad scoliosis, awkwardly laughs because he realized he should of listened to be before hand.
2. A swarm of bees
When I was a kid I noticed that every time I ran it felt like I had a swarm of bees in my chest. I just dismissed it as me being a weak kid since I was so skinny and lanky with little muscle mass.
At age 20 I started to suddenly lose consciousness and my heart would beat really fast. I was diagnosed with POTS at 21 then Ehlers-Danlos syndrome at 25 but the episodes of fainting and tachycardia kept on getting worse. I went from cardiologist to cardiologist insisting that they were missing something and that something was up with my heart.
At first they kept on blaming it on the POTS but I was receiving treatment for it and the episodes of sudden tachycardia wouldn’t stop. I was calling the ambulance constantly and when they would do the EKG it always came out normal. They started to tell me I was having severe panic attacks. The thing is that I would get them in bed when I was asleep and would it would awaken me out of a deep sleep. It felt like a swarm of bees moving faster and faster in my chest. My lips would turn blue, I’d lose all the color in my face, and I would just be drenched in sweat. The heat in my chest felt like it was being burned from the inside out.
So this went on for seven years and I just gave up on living. I didn’t even bother going to the doctor anymore because it was “just panic attacks.” Then I went back to the doctor who diagnosed me with Ehlers-Danlos and told him I haven’t had a decent nights sleep in years because these “nocturnal panic attacks” kept on waking me up and making me look like the walking dead. My family members endearingly started calling me “ghost baby” because of my pale appearance.
He eventually sent me to another cardiologist and I wasn’t even that hopeful until my sister started going through my old medical records and found a holter monitor test result from 2010 that showed I had something called “paroxysmal tachycardia.” I didn’t think anything of it because I have POTS so yeah I have tachycardia as expected, right? I was told this test was normal and I didn’t include it in my records I brought to all my future cardiologists.
So we give him the results from 7 years ago and he asks me if I’m getting awakened by my tachycardia and I say yes. He immediately orders another tilt-table test in which I fail in 6 minutes. Then he did something that no previous cardiologist did in the past and that was an EP study. I was like “yeah whatever get it over with so you can tell me the test is normal and that it’s just panic attacks…”
So they prep me for the cath lab and then the reality of what was about to happen set in and I fre*ked the f*ck out and they had to hold me down when sedating me. I forgot to mention that the test was being done on Friday the 13th of 2017 and I’m superstitious as f*ck. Anyways they knock me out and I was expecting to just waltz out of there in a couple of hours and go about my day moping about how I had another normal test.
Oh boy was I wrong. I wake up 3 hours later being rolled out of the cath lab with my throat hurting like a mofo from being intubated and a bunch of people looking over me smiling and saying “We found the problem!” Apparently my heart was all kinds of f*cked up and I actually had AV Nodal Reentrant Tachycardia which was making my head beat to 240 bpm. I was born with it. The “swarm of bees” in my chest was my heart beating so fast it didn’t have time to fill which is why my lips kept on turning blue and my face was pale. It also was causing me to completely lose consciousness.
Post-operative DX: AV node reentrant tachycardia form of supraventricular tachycardia (SVT) with incessant hypotensive supraventricular tachycardia (systolic B.P 60 mmHg supine) with trebla AV node pathways and observation of fast:slow, slow:slow, slow:fast and slow(1):fast:slow(2):fast reentry.
I received a radiofreqency heart ablation. I then developed four blood clots in the arms where they put the catheters in and was kept in the hospital for 6 days, 4 days in the ICU. Luckiest/Unluckiest day of my life.
I’m never letting a doctor tell me it’s “just a panic attack” ever again. I will lose my sh^t.
3. Not just a headache
They do now usually because I’m missing part of my brain but here it goes… in college I began forgetting things. I started getting super tired. I mean, sleeping 16 hours per day. I couldn’t even type my own essays. I would dictate them to my mother. And at random points my legs would ache to the point where I couldn’t walk. I went to the ER and was sent home with muscle relaxers and pain killers. My apartment was on the first floor and yet I couldn’t walk from my car parked right outside the door to my apartment. I sat in my car and cried for had an hour. I would get visual disturbances to the point where I had trouble driving. My ear was leaking. My doctor suggested it was shower water. Turns out it was spinal fluid. And no one believed there was an issue until my bo*bs started leaking. They kept telling me I had Epstein barr, possible seizures, and migraines. Now I had a possible tumor. When I went in for an MRI they found I had Chiari Malformation where my brain had herniated approximately 11mm into my spinal column blocking the flow of spinal fluid. My skull is malformed and my brain is too big. So there isn’t enough room. There was so much pressure in my head that it was coming out my ear. It was like an extreme sinus infection everywhere in my head at all times. My surgery they took off part of my spinal column, part of my skull, and took out part of my brain. After I found out that my heart issues and my OCD were symptoms as well. I have residual issues but at least I didn’t die. There are still doctors that think Chiari Malformation is just a headache. It also might be the cause of my other condition that made my colagen defective called ehlers danlos syndrome. My joints pop out regularly. Doctors also have a misconception that it just means I’m hyoermobile. I’ve had 5 major joint surgeries thus far and I’m looking at #6. I’m only 27yo.
4. He inspected her toes for needle marks
For 6 years I got occasional headaches really bad behind one eye socket. It would happen every 4-6 weeks and unbearable headache would last 3-4 days solid. No Tylenol or meds worked. Told Dr it felt so painful it felt like it would feel better if I jammed a pipe through my eye socket for relief. We tracked my cycle, I went off nuvaring, tracked headaches on a calendar, she thought it could be dehydration or related to the weather (sinus). Nothing was a patern. Year later, got a script from my primary dr that if I took the injection at the very beginning of a headache it would go away for good. But if I wasn’t able to take it right away (like an hour later), the shot didn’t work at all. I thought I had a sinus infection. Went to ENT in the town I worked. He treated me like a druggie and he inspected my toes for needle marks. (Because I came in and had mentioned that I thought it could be a cluster headache… he was a very old man and said I was telling him I had exactly all of the symtoms to a T of a cluster headache and most people don’t have all of them. By his reasoning I was making it up…) Yes I had done many WebMD searches trying to figure out any and all things it could be. The Eye Dr did that picture thing to look at back of my eye, all was fine, so no tumor. Had an MRI and CAT scan, they came back fine. The neurologist just extended my script saying that as long as those meds worked to keep it up. But I didn’t want to manage it, I wanted to find cure…. went back to eye Dr a year later, still nothing found.
Finally got my primary Dr to write me a referral for blood work. Ended up that it was my Thyroid issue. Been on meds for over a year and a half and haven’t had a headache in that entire time. So thankful to know what it actually was.
(For a long time it was a running joke with my husband that I was going to die young and I told family to perform autopsy that they would see I had a cantalope size tumor behind my eye. Ha. Glad that’s not the case though but seriously took a long time to figure out)
5. Not leg cramps
I had an accident when i was around 12. TLDR fell from a fair height into water onto my back and got trapped. This is when I started to get strange horrendous leg pain. It would creep through my legs, burning, tingling and like pins and needles + intense pain. Last for hours or sometimes a whole day, then just slowly disappear.
My mum took me to the hospital once, because it happened while I was at school and they fre*ked out at how much pain I was in. ER doctors told me to GTFO because it was leg cramps; and my mum told me it was because I crossed my legs too much.
7 years later, I meet someone and they push me to go see a doctor. GP sends me for CT scans, find nothing. They refer me to a Neurologist, they instantly send me for a MRI. Instantly finds out I tore my spinal cord in the original accident and the intense nerve pain is from a build up on fluid in the gap in the cord. Its uncommon, but not rare, but watching doctors google your condition in front of you with a “WTF” expression on their faces is kinda entertaining.
6. It felt like 1000 knives
This isn’t a current condition and prepare yourself for a semi-long story.
I was having serious back pain so I went to the ER at like midnight after getting fed up for months. They told me my gallbladder needed removal but it wasn’t urgent. I could do it that week or in two weeks. I wanted it over with but I had to defend my Master’s thesis in two days so I said I’ll just live with the pain and put it off. So I defended my thesis, my back still killing me. That weekend the pain got worse but I said I’d wait. As I was teaching on Monday morning (I was a TA) the pain all of a sudden got close to excruciating. By some coincidence I had a scheduled check up that day so I called in pain and asked if I could come in early. They said sure and I rushed to the hospital. The doctor saw me. I told him my pain was a 10. I could barely drive and I felt like a 1000 knives were stabbing me from the inside. He refused to take me seriously. He told me he wouldn’t admit me to the hospital since hospitals are full of germs. Instead he’d move up my surgery date to the next day. He told me go around and get stuff done for it, drive home and come back in the morning. I stubbornly did the things they needed, bloodwork, etc. I was near dying the whole time but no one would listen to me. I finished the list of tasks and couldn’t take it anymore. I ran back up to the doctor’s office and in tears of pain I begged the nurse to let him see me again. He saw me again but still didn’t believe me. My tears of utter pain (and I was a young healthy male) weren’t enough for him but eventually he decided they’d see if I could be admitted. But something went wrong, I don’t know where. I told the nurse I needed to be rushed to the ER. The doctor then supported that decision instead. This poor older lady wheeled me down to the ER because at that point I couldn’t really walk. She waited with me for a half hour as they found me space on a gurney in a hallway. She was my guardian angel that day. I later sent her flowers. The ER nurse pumped me with morphine. It didn’t do anything so he pumped me with dialaudid. That stopped most of the pain except the pain in the gallbladder itself. After 7 hours I was admitted to the hospital. I lived off that painkiller like a drug addict all night. I had my surgery as scheduled the next day.
I later found out my gallbladder had ruptured and was eating at my liver. I was at risk of going septic. My doctor admitted in a haughty way that he did not know it ruptured. Anyway all is fine now and I recovered fairly quickly. It was an ordeal I would like to never repeat. I still thank that nurse for being the only person who actually listened to me.
I have always been the chubby girl and then the fat girl since high school. About 4 years ago, I find out I have Lupus. I go to my rheumatologist who looks at me for a few minutes and says ” your knees…where are your knees?” I think to myself..what you have not seen fat people knees before. I leave but her comment haunted me. One night Last year I started googling fat people knees and the word lipedema came up. I immediately started crying. These were my people. I finally felt like I found my truth. Not lying… lipedema is a fat disorder where your body doesn’t store fat correctly. Therefore, no diet or exercise will remove the fat because the body doesn’t recognize it correctly. It starts during p*berty and increase during other hormonal times. It’s other name is painful fat syndrome. Which explains why sometimes even a blanket on my lap hurt. This explains why 1200 calorie diets never worked. Gastric Bypass didn’t work. Still my it’s didn’t believe me. I had to sit one down with over 300 pages of documentation before he understood. Very few doctors have heard of it and even less treat it. I had to drive 2 hours to a lymphatic specialist. He looked at me and immediately diagnosed me with lipedema. Since then I have had two very large liposuctions to remove the diseased tissue. I will have to wear compression garments to prevent regrowth but at least I know what is wrong with me know.
If you Google it… It is lipedema and not lymphedema… people always get them mixed up.
8. Now her issue can’t be fixed
When I was about the third grade, I was adamant that I needed glasses. It was hard to see, but when I went to the doctor, for some reason they assumed I wanted glasses because all the smart girls in school had them (partially true! But I could not see.) Fast forward a few years and I’m 15 trying to get my learner’s permit for Driver’s Ed. They tell me I can’t start driving until I see a doctor about my eyes. I go and I get seen, they tell me I have a fairly severe case of refractive amblyopia. I’m blind in my left eye, to all but colors and very vague shapes. My doctor tells me if I had caught it before I was around ten, I could have participated in therapy to reverse the damage to my eyes and the optic nerves. Because I hadn’t, it’s irreversible. No surgery, no corrective lenses, that’s just my lot in life. I didn’t have any trouble in school like kids with undiagnosed vision problems do, my eyes track correctly, there’s no physical indicator I cannot see, so no one ever thought anything of my complaints and eventually I stopped complaining. It doesn’t hurt me, but I have no depth perception, and it was disappointing to hear it can’t be fixed.
Edit: I’m 20 now, so I’ve kind of accepted it as normal? Realized I was implying that I just found out, and was still 15. I tried a bit of therapy out of desperateness, but it didn’t work.