"I had an accident when I was around 12. Long story short, I fell from a fair height into water onto my back and got trapped. After that, I started to get strange horrendous leg pain. It would creep through my legs, burning and tingling like pins and needles but way more intense. It would last for hours or sometimes even a whole day, then just slowly disappear.
My mom took me to the hospital once because it happened while I was at school and they freaked out about how much pain I was in. The ER doctors told me to leave because it was leg cramps and my mom told me it was because I crossed my legs too much.
Seven years later, I met someone and they pushed me to go see a doctor. That doctor then sent me for CT scans, but they found nothing. Then they referred me to a neurologist, who instantly sent me for an MRI. They immediately saw that I tore my spinal cord in the original accident and the intense nerve pain was from a build up of fluid in the gap in the cord. It's uncommon but not rare; however, watching doctors Google my condition in front of me with a 'what the heck' expression on their faces was kinda entertaining."
"When I was in about the third grade, I was adamant that I needed glasses. It was hard to see but when I went to the doctor, they assumed I wanted glasses because all the smart girls in school had them (partially true, but I could seriously not see).
Fast forward a few years and I was 15 trying to get my learner's permit for driver's ed. They told me I couldn't start driving until I saw a doctor about my eyes. I scheduled an appointment and they told me I had a fairly severe case of refractive amblyopia. That means that I'm blind in my left eye to all but colors and very vague shapes. The eye doctor told me if I had caught it before I was ten, I could have participated in therapy to reverse the damage to my eyes and the optic nerves.
But since 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 and there's no physical indicator I cannot see, so no one ever thought anything of my complaints, so eventually I just stopped complaining. I now have zero depth perception and it can't be fixed."
"In college, I began forgetting things and started getting super tired. I mean, like sleeping 16 hours per day. I couldn't even type my own essays; I had to dictate them to my mother. Also, at random times my legs would ache to the point where I couldn't walk.
I went to the ER a few times and was sent home with either muscle relaxers and painkillers. My apartment was on the first floor and yet I couldn't walk to my car parked right outside the front door. I would also get visual disturbances to the point where I had trouble driving. Then my ears started leaking and my doctor suggested it was shower water.
No one believed there was an issue until my chest started leaking. It turned out it was spinal fluid. Doctors kept telling me I had Epstein Barr, seizures, and migraines. 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 the fluid was coming out of my ears. It was like an extreme sinus infection everywhere in my head at all times.
My doctor scheduled a surgery where took off part of my spinal column, part of my skull, and took out part of my brain. After that, I found out that my heart issues and OCD were symptoms as well. I still 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 called Ehlers-Danlos syndrome, which means that my joints pop out regularly. However, doctors also have a misconception that it just means I'm hypermobile. I've had 5 major joint surgeries thus far, and I'm looking at #6. I'm only 27 years old."
"I have an inflammatory skin condition that leaves me with constant, painful boils and abscess. Every few years, I have one that gets infected and I have to go to the ER to get it lanced. It's painfully and psychologically traumatic every time.
Maybe four years ago, I'd had a fever for a week, which is always a sign that the infection has gotten out of control and I needed IV antibiotics. I went to the ER and explained the situation to the triage nurse, and of course, my fever finally broke as soon as I spoke to her. But fine, she admitted me and I waited.
My name was called and I explained the situation to the doctor. He rolled his eyes and told me, 'It's called the flu. But fine, let's take some blood. Oh, the nurse mentioned you had something with your skin, let me see.' I uncomfortably pulled down my pants and showed the doctor my skin. He proceeded to tell me to stop shaving (I very clearly cannot and do not shave) because those are just ingrown hairs. I very politely told him that no, actually, I have this skin condition called hidradenitis suppurativa, those are boils, and I need a particularly bad one lanced. He proceeded to again, roll his eyes and tell me I was wrong, belittle me, etc. I walked out. I later got my IV antibiotics from my dermatologist who was horrified. Thanks for almost killing me of sepsis, you ignorant, misogynistic doctor!"
"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 randomly 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 they 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 I 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 hadn't had a decent nights sleep in years because the '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 the records I brought to all my future cardiologists.
So we give him the new cardiologist the results from seven years ago and he asked me if I was getting awakened by my tachycardia and I say yes. He immediately ordered another tilt-table test which I failed in six minutes. Then he did something that no previous cardiologist did in the past and ordered an electrophysiology 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.'
They prepped me for the catheterization lab and then the reality of what was about to happen set in and I freaked out, so they had to hold me down while sedating me. I forgot to mention that the test was being done on Friday the 13th and I'm superstitious as heck. They knocked me out and I was expecting to just waltz out of there in a couple of hours and go on with my day moping about how I had another normal test.
Oh, boy was I wrong. I woke up three hours later being rolled out of the lab with my throat hurting super bad 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 messed 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 turning blue and my face was pale. It also was causing me to completely lose consciousness. I received a radiofrequency heart ablation and then proceeded to develop four blood clots in the spots where they put the catheters in and was kept in the hospital for six days, four of which were the ICU. It was both the luckiest and 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 mind."
"I was having serious back pain so I went to the ER at like midnight after being fed up for months. They told me my gallbladder needed to be removed but it wasn't urgent, so I could have it done that week or in two weeks. I wanted it over with, but I had to defend my Master's thesis two days later, so I said I'd 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 and I told him my pain was a 10. I could barely drive and I felt like a 1,000 knives were stabbing me from the inside, but 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 to 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, and 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 and I later sent her flowers. The ER nurse pumped me with morphine. It didn't do anything so he pumped me with Dilaudid. That stopped most of the pain except the pain in the gallbladder itself. After seven hours, I was admitted to the hospital. I lived off that painkiller like an 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. It was truly an ordeal I would like to never repeat and I still thank that nurse for being the only person who actually listened to me."
"I had always been the chubby girl since high school. About four years ago, I find out I have Lupus. I went to my rheumatologist who looked at me for a few minutes and said, 'Your knees...where are your knees?' I thought to myself, 'What, have you not seen fat people's knees before?' I left, but her comment haunted me.
Then 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. 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 puberty and increases during other hormonal times. Its other name is painful fat syndrome, which explains why sometimes even a blanket on my lap hurt. It also explained explains why 1,200 calorie diets never worked and gastric bypass didn't work.
But still, my doctors 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 two 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 now."
"Back in the second semester of my first year of university, I started to notice something was...off. I was having bad stomachs aches, my hair and skin went super dry, I randomly gained 10-15 lbs (which at 5'2 was quite noticeable), and I was exhausted all the time. I could get 10+ hours of sleep and wake up out of my mind tired. Finally, when it got to the point that my friend in calculus had to wake me up from nodding off literally six times over the course of one 50 minute lecture, I decided I'd had enough. I got him to help drag me over to our campus clinic and got on the list to see a doctor.
A couple hours later, I was in an office, explaining everything to the nurse and then again to the doctor. He asked me a few basic questions about my lifestyle, when my last period was, etc, and said that t hey'd do a blood test and see me back in a couple days. They took my blood and he told me it came back normal, but he wanted to do it again. So back I went to the clinic to get poked. Yet again, the results came back 'normal.' Lather, rinse and repeat for a third time. Now, through all of that, I was still experiencing all the same symptoms and was in no way, shape, or form the functioning human being I previously was. It had been a month and a half, and I was tired of being poked and told everything was fine. What does this guy want to do, of course? Run A FOURTH BLOOD TEST.
I lost it. I asked him, 'Do you think it will show anything different?'
He replied, 'If it's what I think it is, it might.'
I said, 'I'm done with might, I'd like to know what the next step is in regard to diagnostic options.' His solution? An abdominal ultrasound. Ok, at least it was moving somewhere away from what'd gotten us nowhere, but I was curious. What was he looking for?
It turned out that jerk doctor had decided that as a first year, newly legal, and single female living on her own, the only solution was that I had gone crazy with my promiscuous ways and MUST have gotten pregnant. Despite the fact that I was on birth control and had had three blood tests done with negative results, he was convinced that I was early enough that the hormone levels hadn't built up enough to be detected in my blood. Luckily, I live in Canada (yay universal healthcare!), but still. I ended up getting the ultrasound anyway, partly to prove him wrong and partly just in case anything else showed up that this idiot would've otherwise not tested for, and sure enough, guess who wasn't pregnant? Everything else looked normal too, so I gave up and didn't go back.
A week or two later, I had a four day weekend and flew back to my home province. My mom took one look at me and drove me straight to my childhood family doctor's office. By the time I was ready to fly back for school four days later, I had been diagnosed with an autoimmune disease called Hashimoto's that had become severe due to being allowed to go unchecked, had a treatment plan in place, and finally felt for the first time in months like I wasn't crazy. How did they diagnose this, you ask? A simple blood test. Turns out it's amazing the amount of information you get back when you aren't only checking the box for pregnancy tests to be run."
"For six years, I had headaches really bad behind one eye socket. It would happen every 4-6 weeks and the ensuing headache would last 3-4 days solid. No Tylenol or other medicine worked at all. I explained to my doctor how it felt so painful that I wanted to jam a pipe through my eye socket for relief. I tracked my cycle, went off birth control, and marked my headaches on a calendar.
She thought it could be dehydration or something related to the weather since no patterns were emerging. A year later, I got a prescription from my primary doctor for some medicine that, if injected 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 the sinus infection theory was plausible, so I went to an ear, nose, and throat doctor in the town where I worked. He treated me like an addict and inspected my toes for needle marks. When I came in, I mentioned that I thought it could be a cluster headache, and the symptoms I mentioned were so spot on that he thought I was making it up because most people don't have all of them, so he sent me away.
Then I went to an eye doctor and everything looked fine. I had an MRI and CAT scan, and they came back fine. The neurologist just extended my prescription, saying that as long as those medications worked it was all they could do. But I didn't want to manage it, I wanted to find a cure. I went back to the eye doctor a year later, and still, nothing was found.
One day, I finally talked my doctor into writing me a referral for blood work: it turned out that it had been a thyroid issue all along. I've been on the appropriate medication for over a year and a half now, and I haven't had a headache in that entire time. I'm just so thankful to know what it actually was."
"When I was a child, my pediatrician knew and had proof of part of my medical conditions. Specifically, rotoscoliosis, which manifests as deformed ribs crushing my left lung (it doesn't fully expand). She chose to not tell me or my family. Eventually, my mom started to really think something was wrong because I always complained about my back hurting.
She ended up making an appointment with a different pediatrician and he took x-rays. When we met with him after the x-ray's, he told us that he couldn't do anything because 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, and he literally laughed at us.
He said there was NO way they 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, to apologize. He was in disbelief that I had so much going on and was still walking around like a normal kid.
Unfortunately by the time, it was all found out my rotoscoliosis had gone past the point of help. That happened when I was 8-9 and I'm now 23 years old. 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 condition so they wouldn't freak out. They dismissed me, then as I was standing there after they took the first one, I heard them saying, 'Oh my God, did you see this? Look at her spine.' The doctor in ER said, 'Well, your x-rays look fine other than some, uh, bad scoliosis,' and then awkwardly laughed because he realized he should have listened to me beforehand."
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