1. "I've been dealing with digestive issues my whole life. My GI doctors chalked it all up to my celiac disease (which some of it was), but I was still in pain and having problems after being gluten-free for almost two years. All my blood tests would come back normal, so all of my doctors assumed it was just my anxiety acting up. I had to beg my GI doctor to perform a colonoscopy a few years ago. I reminded them that I have an aunt with Crohn's and a grandma who survived colon cancer. They still dragged their heels."
"Finally, in 2021 (during a really rough time in the pandemic), I was starting to lose blood from my colon every time I went to the bathroom. I also felt like I was being stabbed all day. My dad brought me to the hospital, and they refused to do any sort of imaging. I was sent home to bleed and be in pain. Thankfully, my dad brought me to an urgent care center the next day, where someone had the brilliant idea to do a CT.
The tech that looked over my scans said my intestine was lit up like a Christmas tree, indicating lots of damage and inflammation. Fast-forward to a week later when I got a colonoscopy and found out that I had a pretty severe case of ulcerative colitis. All of which could have been figured out years ago if my doctors had listened to my concerns."
2. "My little sister, who was 14 at the time, had been complaining of intense neck and shoulder pain. You could feel that her muscles were hard as rocks. For months, every pediatrician attributed it to 'just stress.' When she finally collapsed in so much pain at the ER, they did a CT scan and found that she had Chiari malformation. Essentially, her brain was resting on her spinal cord. Had she not had emergency surgery that week, she could have been paralyzed."
3. "When I was 8 years old, my father died from cancer. At 9 years old, I started having headaches. My mother was told that it was because of my father’s death. Fast-forward to me at 20 years old — I was a switchboard operator and, while at work, I went blind. I was rushed to the hospital and was told I had a myriad of issues: a brain tumor, then I had MS, and then it was all just make-believe on my part."
"I did regain my sight but suffered with headaches for many many years until, at the age of 46, I collapsed in front of my home. I was rushed to the hospital and told I had the flu. Then four days later, I insisted that my husband take me to another hospital where I was diagnosed with having two brain aneurysms and one had ruptured. I was flown to Chicago for double brain surgery. Needless to say, during the ages of 9 to 46, I saw 27 different doctors and they all dismissed my symptoms as hormones, stress, or just in my mind. I am fine now, though I did lose significant vision in my left eye due to the aneurysms on my optic nerves. Hence the headaches and blindness I experienced for a couple of weeks when I was 20 years old."
4. "I had a friend that years ago kept having really heavy periods and cramping even when she wasn't on her period. She went to her doctor numerous times and they told her to her face it was because she was 'fat, unhealthy, and some women just get heavier periods.' I was livid for her. Fast-forward a while and she was still dealing with this so she saw another provider. They did a scan and found a football-sized benign tumor on her uterus. She got it removed and she's good now."
5. "For several months I couldn’t keep anything down, had really bad pain, and gas so bad I had a hard time breathing. Three ER visits for dehydration, intense pain, a visit to a heart doctor, and a sleep study later (I had stopped breathing one night), I was finally diagnosed with gallstones and had to have my gallbladder removed. I had mentioned that possibility over and over to my doctors but they didn’t listen because I was only 30 and didn’t 'fit the profile' of a typical gallbladder case. What’s more, since I couldn’t eat, one of my bipolar medications couldn’t work and I got suicidal. You really do have to be your own advocate."
6. "I have always had weird periods that I could never track and have been taking all kinds of medication, which may have contributed to the problem. But I kept feeling these pains in my stomach, so I went to the ER and I told them I thought there was something weird going on when I would wipe to pee. They said, 'No, looks normal.' I eventually got my gyno to do an ultrasound and a laparoscopy and found out that my uterus had literally slid down and was protruding from my vagina. The hospital had literally seen this and said it was normal. During the pandemic, I had two surgeries to remove both my uterus and my ovaries but, man, I had no idea your uterus could literally fall out."
7. "I had extreme pain in my abdomen area and went to ER after hours of pain. In the ER, the doctor gave me oxytocin, fentanyl, and morphine. It didn't even numb the pain — I was screaming for an hour in the ER. Finally, I was able to breathe through an ultrasound while still in pain. Nothing was seen by the ultrasound tech or the doctor, but my pain was still so intense. The doctor said since they couldn’t find anything, they were going to discharge me."
"I told her that I would not leave with pain so intense that even the strongest meds didn't help. She finally agreed to a CAT scan. I was given ketamine to make it through the CAT scan without moving. The doctor told me it's what they give gunshot wound and broken limb patients. Once the CAT scan was done, it showed that I had a tumor on my kidney. Cancer — all blood work came back normal before that. I had surgery last year to remove the tumor and luckily did not have to do chemo or radiation. I learned you have to fight for your own health because even medical professionals will dismiss your pain."
8. "I started having incredibly painful periods when I was only 13 years old. I would bleed through my tampons so quickly that I switched over to using pads, and those would fill in an hour flat, through to my pants, every single time I had my period. I went to doctor after doctor explaining my issues and was told periods are just painful for some women. I was put on multiple different pills, I tried the Depo shot which caused me to gain over 20 pounds, I tried the NuvaRing, and then went back to the birth control pill when nothing seemed to help my pain levels and I would have constant breakthrough bleeding."
9. "I had episodes of feeling unwell for years (debilitating stomach pain, exhaustion, headaches, hives, etc.) and was always told that it was stress. It wasn't until I was in my 30s and started getting 103-degree fevers every week, accompanied by chronic burning pain in my lungs and awful back pain, that I was finally referred to a rheumatologist and diagnosed with familial Mediterranean fever — a rare genetic auto-inflammatory disease that ends up destroying your kidneys if left untreated. I'm on meds now and my kidneys are fine, but it made me lose a lot of faith in doctors."
10. "I’m fat and physically disabled. One day, after multiple days of not feeling well, I passed out and had a heart rate of 145, along with difficulty breathing. My tonsils were also swollen, so I had difficulty speaking. The ER doctor took one look at me and the braces on my legs and, without running any tests, called me mentally incompetent and wrote it off as anxiety."
11. "I saw multiple doctors to figure out why I had random pain in my side and swollen lymph nodes in my neck. A GP, an oncologist, and an OBGYN. Finally, I saw a gastroenterologist. By the time I got to the GI, I was having tons of gastrointestinal issues, my skin was turning grey, and my eyes were sunken in. I had terrible breakouts, daily headaches, frequent migraines, more swollen lymph nodes, and bloating, and I couldn’t lose weight no matter what. I asked the GI doctor at the first visit if I could have issues with gluten or celiac disease, or just food allergy issues in general. He said, 'No, only thin people have celiac disease.'"
"I asked for the blood test for celiac disease. He said no because there was no way I could have it. He put through a year of tests: at least one test a month if not two or three. So many scans, blood tests, etc. I kept getting sicker and eventually began having neurological symptoms as well. I really felt as though I was going to die if they didn’t figure out what was wrong with me.
Finally, one day he said, 'I think it’s all in your head, but I can’t send you to a neurologist until I do every test, so you have to do this blood test for celiac disease even though I know you don’t have celiac disease.' Guess what I had? Celiac disease.
On my last visit to him to tell me about the findings of my second endoscopy, he was so smug about figuring out what was wrong. I had to sit on my hands because I wanted to hit him. Then he said, 'I don’t know much about the gluten-free diet, you’ll just have to Google it.'"
12. "I had appendicitis on and off for six months in my teens. One doctor wrote it off as a cyst on my ovary and gave me birth control which made me gain weight. The next doctor blamed the pain on my WEIGHT GAIN. The next doctor told my parents I had diverticulitis and to avoid certain foods. The next doctor told my parents it was all in my head and I was trying to get out of school. Then, the pain got so bad, I passed out. The hospital did an ultrasound and I was in surgery within the next 20 minutes. My appendix burst on the table and I was in the hospital for two weeks."
13. "Over the course of literally a morning at work, I lost my vision. I had someone drive me home and saw an ophthalmologist, who diagnosed retinal detachment in both eyes due to stress and the treatment was 'rest and relaxation' for three weeks. Two and a half weeks into being basically bedridden because I couldn’t see, I had night sweats, was barely eating, had migraines, and pain in my collarbone."
"My mom took me to urgent care and they asked if I was pregnant (I wasn't). After more bloodwork and a trip to another hospital’s ER, they told me I had leukemia. The retinal detachment was because my immune system couldn’t fix the fluid buildup in my eyes. If the ophthalmologist had done bloodwork, it could have been caught three weeks earlier, but I’m now 11 years post-bone marrow transplant and completely cured!"
14. "In college, I started gaining weight very quickly, had a large lump in my neck, and was losing my hair. I also was exhausted and felt like I was dying. I went to my male GP multiple times and was told to 'stop eating carbs' to lose weight (my BMI was still normal) and to exercise to get more energy. I even paid for a private hospital physical with a fancy male doctor to understand what was going on. A year later, I moved to Philadelphia and got a female GP. She immediately diagnosed me with Hashimoto’s and severe anemia with an Hgb (hemoglobin) of 9. She said she had never seen thyroid antibodies so high."
15. "It took me three years to get an MS (multiple sclerosis) diagnosis. During that time, I had lost vision in one of my eyes, lost feeling in my feet and lower legs, broke bones in my foot from my leg just not working, and experienced recurrent urinary problems. Each time I went to the doctor, I got told I was probably just stressed because I was studying for my master's degree."
"I moved cities and swapped doctors and my GP finally sent me for a CT scan where they found I had multiple active lesions on my brain and spine. I spent years thinking I was losing my mind and somehow just making up all my symptoms. Takeaway for me was that I know my body and I know if something is wrong — I’m a much better advocate for myself now."
16. "When I was pregnant with my first child, I had stated to my doctor and midwife that my family has a history of preeclampsia. I was ignored every single time. I had every single symptom of the condition except the protein in the urine. Three weeks before my son was born, I ended up in hospital with such high blood pressure, I couldn't keep food down but was told the baby was OK."
17. "When I was younger, I suddenly got very intense migraines right after New Years. I was going through a lot at the time and was preparing to go back to school, so my parents brushed it off as a stress headache. After a week passed, I finally convinced them to take me to a doctor. The doctor said that it was just a migraine and to rest and wait for it to pass. Another two weeks passed and I was getting worse."
"I had no appetite, I felt dizzy whenever I moved, I couldn’t walk in a straight line, and I felt a sharp stabbing pain in one part of my head. After one day of school where I had to go to the nurse three separate times to lie down and receive medicine, my parents finally took me to the ER. I sat there for five hours just to be told that it was a migraine. They sent me home without a CAT scan, an x-ray, or any medication/IV. The next day, after I came home from school, I couldn’t walk without falling down or getting extremely blurry vision, so back to the ER we went.
This time, they performed a CAT scan and found a tumor the size of a grape on my brain that was growing. It turns out that when I had an MRI done years prior for a completely unrelated reason, the doctors neglected to tell me that there was a very small cyst-like structure on my brain. I had surgery, although thankfully it was a mild one (or as mild as brain surgery can be) and I recovered in just a few months. If I hadn’t pestered my parents and insisted something was wrong, I could’ve easily ended up with a more significant brain tumor or brain cancer.
18. I have had issues with my reproductive system most of my adult life and I have gotten very used to being treated horribly by doctors. When I had polyps, which caused constant bleeding and cramping pain, I asked the doctor who diagnosed them what treatment I would get. He said, 'Nothing, you don't need to take space in the health system dealing with that.'"
19. "My mother is particularly tall, broad, and looks very tough (think Luisa from Encanto). When she suddenly started losing weight and complaining of back pain, the doctors simply told her that it was from her job (she would shop for and move heavy objects in a van every summer). It wasn't until she was literally screaming through the night unless she put her own leg in traction position, and she and I both yelled at the doctors to fucking do something that she got a diagnosis: stage four non-Hodgkin's lymphoma. It took them even longer actually start chemo. My mother has a permanent limp and no feeling in most of her left foot thanks to it not being taken seriously. I'm just grateful that she's alive."
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Note: Some responses have been edited for length and/or clarity.