Patients spend years undiagnosed while doctors dismiss their symptoms

“I went to my rheumatologist today and it went so badly i ended up crying in the middle of it. I have been trying to get diagnosed for like 7 years and i finally wqs starting to get somewhere with my rheum. I suspect I have an auto-immune disease or disorder because of my symptoms. I had gotten a round of blood tests done at my last appointment with my rheum and I had two different positive/abnormal results that could point to me having an auto-immune (rheumatoid factor IGM and RNP antibody) My r”

“I'm sure lists of symptoms are somewhat controversial, at least when shared with a provider. I feel conflicted about them myself. I've had widespread symptoms for my entire life that started really kicking into gear in my teens and now my daily functioning in my mid-20's is quite rough. I was putting off investigating for a while because I had had several very negative experiences with medical neglect and gaslighting, but I'm so sick and tired of this and I have a year-and-a-half”

“How do you cope when you’re early on in the diagnosis stage, going from doctor to doctor, people are constantly minimizing your symptoms and your pain, constantly on reddit or google trying to find answers. Because I am in this stage right now, everyday is a struggle and I don’t know how to categorize my symptoms, I don’t know if it’s one issue or multiple issues, doctors don’t seem to listen to me, and the people around me all tell me it’s just anxiety. submitted by /u/multi8modalit”

“It's unbelievable how much bad luck, doctor after doctor, test after test everything comes out fine. Every normal test result is only making it more difficult to get a doctor to believe me I'm having debilating symptoms. I'm starting to develop deep hatred towards doctors I hope they get the karma they deserve I hope they get gaslighted and told it's just anxiety maybe then when their in our situation they'll feel remorse for how they treated their patients submitted by”

“First, a win that this community may appreciate: been experiencing chronic pain and disabling autonomic symptoms for years, probably hypermobility/MCAS related… doctors have mostly not taken it seriously or bounced me between specialists. Finally a few weeks ago my new OB/Gyn listened at our first appointment and ordered imaging, and surprise, they found something! It won’t solve all my chronic issues, but turns out this could be significantly contributing to my pelvic pain. If I get even 10% re”

“Can’t really get treatment without a diagnosis even if treatment doesn’t necessarily mean prescription meds.”

“When I went to see a cardiologist the first time he'd decided based on normal resting echos that I was just mentally ill and there was nothing wrong with my heart. I now have concrete evidence that this is not true and I do have a heart condition. Not sure if going back to him will be useful. Has anyone else been in a similar situation and did their attitude toward you change? submitted by /u/Wide_Tune_8106 [link] [comments]”

“I need to vent because I am so furious. A year ago when I was 14, I developed severe chronic digestive issues. Heartburn, stomach pain, waking up with foam and acid in my mouth, severe reflux, and I struggled with eating even basic safe foods like rice or soup due to the constant flare ups and pain. I deeply trusted my pediatrician, who I saw for YEARS, but the second I visited her and asked for help, for tests, meds, anything to help my chronic reflux, she insisted my symptoms were just anxiety”

“For the last 15 years I've been bouncing between psychiatrists who were misdiagnosising me and giving me medicine that didn't help or made it worse. When those pills didn't help me they accused of not taking them. I've had 10+ doctors through the years, I've had all sorts of diagnoses and doctors wouldn't even list what symptoms I have to make that decisions. I was treated like i'm not there. I am so tired, it just feels like this is a neverending fight against an unw”

“Long story short, I think I have reached the turning point of ten terrible years where I suffered from chronic symptoms that were mistreated by so many doctors. I even was misdiagnosed with a condition and had to take unnecessary medication for 8 years. In the last year I started feeling much worse, I didn’t have a single day in which I was feeling okay. My GP always treated me by prescribing generic meds without getting to the root of it. Making hypotheses and diagnosing me on the phone. Sendin”

“Hi all, I am 29 and for the last 6 years I have been struggling with undiagnosed chronic illness. (Generalised musculoskelal pains, dizziness, heart palpitation, shortness of breath, etc). In addition of this for 1.5 years my mental health declined after a traumatic event and my work for whatever reason took over after that. I have had severe insomnia for more than a year. It is driving me insane. Because of my whole health I have faced descrimination and adverse treatment at work which has caus”

“Hey everyone, In the past 2 years i had come and go symptoms of around 2 weeks where i get extremely naseaus and loss of appetite and stomach burning then it goes until this may. It happened but on july I developed fever for 2 days my crp went to 135 and fecal protein 1700. Did many tests including endo and colon. In the colonscopy it showed inflammation of the terminal ileum while colon Shows "focaal actieve colitis" (focally active inflammation) and signs of a past inflammation. Impo”

“Yeah, unfortunately, this is very true. And the worst part is that I was diagnosed as a child, so it's not even a self-diagnosis or speculation from my end. The curse of having high functioning ASD is not being taken seriously, and just being expected to try harder when you are already trying very hard.”

“The most recent ones are Femoroacetabular hip impingement that has progressed to stage 2 osteoarthritis already and Hashimotos. I have PCOS, PMDD, OCD, Bipolar, MDD, GAD, CPTSD, ADHD, a tail bone injury, Fibromyalgia,CFS, POTS, and Early onset Diabetes at 35. I am expecting a few more diagnoses related to ringing ears, migraine attacks,. I might possibly have sleep apnea as well. Gonna get evaluated for autism soon. submitted by /u/Substantial_Bet_6766 [link] [comments]”

“I'm a patient. A little background: I'm a 28 years old female, hypothyroidism since age 5, Crohn's diagnosis at 26, started having weird tremors/tics/jerks one night in 2024. Shortly after, I developed constant shortness of breath, chest pain, and severe fatigue. An abnormal datscan but not Parkinson's, dystonia, orthostatic intolerance, peripheral neuropathy, and fibromyalgia. More background: I've always been high functioning, have three different degrees and was in the mid”

“Ive labelled this to vent but I'd love some insight if anyone else was/ is still in my situation. Since graduating last year with my Ba, my chronic illness flared up from September 2025 to end of march 2025 (when I was finally given meds) Since then, I have done my hardest to job search and put in all my effort. Unfortunate life circumstances meant I only have 3 months of employment, long term volunteering and a Ba under my belt. Whatever I do, whereever I apply it seems to be a waste and I”

“I could write a long list of things I wasn’t prepared for after getting diagnosed with multiple chronic illnesses but the one I’m most tired of today is NON STOP having to prove I’m sick & in pain. Whether it’s doctors, insurance, disability, friends, family, jobs whoever, I’m tired. I wouldn’t wish a chronic invisible illness on anyone. The way people treat you is significantly different than if you LOOK sick. submitted by /u/WittySN2020 [link] [comments]”

“No wonder I've been feeling like shit. It's been rainy for a couple of days now. I haven't been diagnosed for arthritis, the nearest rheumatologist that takes my insurance has been wishy-washy on availability for taking new patients. I'm on Medicaid, with full medical coverage. I guess I just fall into all the right categories to achieve this feat. One might be because Massachusetts is a commonwealth. We're more focused on actually helping people than most other states. Grant”

“Like... I'm currently sitting waiting for a GP appointment. My GP is nice, I've seen him multiple times before. I'm not here for anything really serious or scary, just some niggling symptoms I'm having. I'm not asking him for anything he might say no to, I'm not expecting any test results. Yet I'm shaking and my heart is racing and I feel SO ANXIOUS I could puke. Years of chronic illness and difficult/upsetting medical appointments have now conditioned me to get an ex”

“I never thought of leaving a post in a chronic illness reddit sub ever in my life but here we go. I had stomach pain starting in April this year, which never stopped till today. I started my food diary in Mai. I'm a pescetarian, but I leave out many milk products so I'm only left with cheese (thought so at least). I started to not tolerate any spicy food after often eating Korean/Japanese/Chinese cuisine home made. I had cramps in my whole digestive system at 3am so heavy that I thought”

“I don't even know where to start with this. I've been suffering for 5 years now with chronic illness that just gets worse and worse. Dealing with doctors that don't care at all, and specialists that for some reason also don't care. My blood tests have come back every time with chronic inflammation, and everyone agrees something is wrong but there's no "clear picture" so they send me on my way to continue suffering with pages of symptoms that nobody even cares to hel”

“It's so sad when doctors are so nice to older patients especially the elderly ones but once a young person in her 20s comes in, they suddenly turn sour and angry thinking this is just a malingerer. This is why no one would believe I was treated badly so I cannot file a complaint after I got repeatedly insulted on a personal level during a consultation. He called me lazy, sick in the head, perfectly healthy, forced me to do jumping jacks despite my plantar fascitis. I wanted to go back to my”

“Waiting for test results. Waiting for specialist appointments. Waiting for insurance to approve treatment. Waiting for a diagnosis. Waiting for symptoms to get better. Waiting for symptoms to at least stop getting worse. Waiting for doctors to call back. Waiting for someone to believe you. Waiting for your life to start again. I spend so much of my life waiting. And the waiting isn't passive — it's active, exhausting, and consuming. It's checking my phone every five minutes for lab r”

“Content Warning: mentions of nausea, vomiting, diarrhoea Some backstory (warning a bit gross): For the past 9 years I have been having daily nausea, vomiting up to 10 times, chronic cough, fatigue, dizziness, migraines and for the past year diarrhoea was added into the mix, usually 4 times a day minimum. Waking up every single morning for 9 years running back and forth to the toilet has been hell, I hate nausea, I hate vomiting and somehow it still has me crying even after all these years of rep”

“Has this happened to anyone here. Ive been falling sick since last 4 years. There's never been a month ive not been to a clinic. I'm sick & tired of it. I've felt quite tired lately. Im 48 & i have never been this sick ever in my life. I'm very close to giving up. Has anyone ever experienced this. If yes, how did you help or heal yourself. Ive never felt this way before. I fear being seen outside. Ive never felt this way before. I'm tired. Need some help or guidance p”

“Sorry for weird formatting, im on mobile with low spoons. I am going back tomorrow to my rheumatologist specifically to ask about lupus. I haven't been to her in months because after years of expensive tests with no conclusive results, she essentially decided to keep me on a prescription strength NSAID and told me we are going to manage my symptoms. 🫠 (I mainly only talked about my joint pain with her) The issue is my symptoms have worsened and alot of them line up with lupus sadly. Frequen”

“Yeah, I think 2 things can be true. One is that patients sometimes do not listen/do not hear correctly and are convinced everyone is against them. Two is that there actually are some people who shouldn't be doctors and say the most out of pocket shit. Things can also fall anywhere between, so it can be hard to know which is the case. I have had doctors say the most inappropriate shit to me on occasion. It happens. I've also known people who seemed to always have doctors say the most inap”

“I think about things like this every time I call my people residents lol. I don’t like calling them patients since they live there.”

“lol 🤣 obviously I’d never actually try to argue with people about this stuff…but it’s fun to imagine saying something like “Wait, did they seriously say that? That is extremely inappropriate and I’m obligated to report that. Can you tell me the doctor’s name and exactly what they said while I write it down?” I imagine the story would change….hahaha”

“I'm speaking on the behalf of a friend is 18F. She is going through terrible medical gaslighting and all given excuses by the doctor is that she has a condition and therefore her symptoms such as blacking of vision and feeling faint with varying severity, fevers and some other things. Recently she has these new symptoms where she wakes up with acute abrupt intense palpitations and chest pains and everybody has been dismissing it as anxiety and it makes her so stressed that she crashes out be”

“They broke their femur from fainting??”

“Patient demands a CT, worried that he has cancer. But, of course, he doesn't lead with that. He initially demands the scan just because. I tell the patient that we can't just do whatever random scan they're requesting - and that they don't even actually need, and give a simplistic explanation of the fact that different scanning protocols exist to answer different clinical questions. Summarised by saying we can only order specific scans, and can't do a scan without knowing wha”

“All the time. Usually, the patients took the jist of the message in the moment, then retold it over and over. Every time you tell a story like that, you re-write it a little, imbuing it with your current emotions and tweaking the phrasing. For example, when I was 15 my dad decided to move to Texas. He said “u/UnbelievableRose, you’re 15 now and you don’t need a father in your everyday life. I’m leaving.” He’s a loving father and I guarantee he never phrased it exactly that way, but that was the”

“I’ve never seen a doctor give a specific time frame of survival. I’ve seen some horrific injuries resulting in awful deaths and a few rare survivals. Never seen a physician give anyone a specific amount of time to live.”

“sorry this is so long, i'm just very upset. i've been dealing with chronic nausea and stomach issues my whole life, which has just been dismissed as "anxiety", and finally saw a doctor this year. it was awful. for some reason he kept insisting that nausea couldn't be attached to any chronic illness. he said only pain causes nausea, and i MUST be in some kind of horrible pain to be nauseous all the time. i don't even get nauseous when i am in pain though, and am most def”

“That’s what my GI specialist said to me yesterday and I can’t stop thinking about it. I went in because I’ve been having GI issues and I wanted to discuss the connection between being hypermobile, having suspected dysautonomia and possibly MCAS. He also said I couldn’t be hypermobile because “those people are contortionists”. I told him about how eating gives me cramps with sometimes trigger a (vasovagal) pre-syncope. “Who told you that?” He asked. I told him it was my cardiologist and he looked”

“Today my doctor told me she doesn’t know what could be wrong with me. I have been dealing with health issues for my entire life, with them noticeably getting worse in the past 4-5 years. I have chronic joint and back pain, chronic stomach issues, and more. My doctor tested me for autoimmune diseases and everything came back normal. Today she told me that if our last effort tests come back negative, she has no idea what’s wrong with me or where to go from here. I also have multiple infections in”

“Hi I'm 34F, 5ft1, 49kg, don't drink or smoke, in UK - will be as succinct as I can (apologies for life story!) - since Feb24 I've had intense RUQ pain (always same place and quite specific intense localised pain) 'flare ups' (often but not always accompanied by really intense nausea and a low grade fever) - it will often flare for a month or two and then die down slightly (becoming sore / tender but not extreme pain) for another few months, and the cycle continues. (Doesn&#39”

“I have confirmed Chiari on my report but my neurologist said it's not significant. I've been to so many specialists. I also have some overlapping conditions that are undiagnosed and causing seizures and temporary paralysis episodes. I can not get my doctors to listen to me no matter what I say. I've literally lost feeling in parts of my hands and feet. Now he's referring me to a POTS clinic of all places?? I told him I've already been there and I do not want to go again. A bu”

“Never fear! I not going back to them. Now I'm debating an honest google review or formal complaint. Gotta process a little more first. This comment was after I messaged him weeks back asking for imaging and his MA responded that they would do an X-ray if I make an appt. which I did... I don't get it either, it's not like any harm would come from an MRI. If anything maybe it'll confirm his DX he made 3 minutes into my first appt with him. Asshat. I regret not storming out without”

“From September 2025, I have been suffering with chronic pain and stomach discomfort. The key change at this stage, was a traumatic hospital admission. I was rushed into hospital and was told I needed to stay which was a very difficult experience for me. Since then, nothing has been the same. 3 months ago I thought I started seeing some sign that things were getting better, as I haven’t had a severe flare up of my condition pain since. It’s still there, just not severe where I have to go to the E”

“rhetorical question, because obviously i should go back buttt... i havent seen my rheumatologist in years and i really dont want to because i believe he misdiagnosed me (loll) he only did a blood test and no further testing for my autoimmune condition (you HAVE to have multiple tests done.) it was all so confusing, other conditions were marked as positive, and he didnt tell me, i was around 16 at the time (im turning 21 soon) so my thought process is that he didnt want to tell me because i was s”

“I’m in my mid 30s and been sick now for a little over a decade. I left college at the start of it and it just got worse from there. I have POTS, CFS, gastroparesis and potentially cervical instability leading to some of this but don’t have the finances to figure any of it out/ treat it so I’m living with my mom. My mom and dad are divorced and dad doesn’t live nearby. I have no siblings and we don’t have much extended family. But the issue is aside from the extended family who couldn’t care less”

“just met with my ortho and reviewed my mri. i have two of the worst herniated disks he has ever seen. am i wrong for being glad i am so severe? i feel so affirmed that im not just making it up for being crazy. surgery is the only option but they are giving me an epidural while i wait. advice on how to get through that too please lol. i feel like nothing (but the disks) can stop me. mom cried when i told her how bad it was. i feel worse hearing that she was so sad than to get the news myself. for”

“Went to a new specialist today. Brought my medical records, symptom logs, medication list — everything. And still, I got the look. You know the one. The skeptical eyebrow raise, the slight pause before they ask "so what brings you here today?" as if I haven't already explained it all in my referral. I answered their questions. I described my pain, my fatigue, my daily struggles. And at the end, they said: "Well, your labs look normal, so it's probably just anxiety." J”

“i’ve been looking for an answer for years for my extreme chronic fatigue and chronic joint pain. i get vague or normal tests results and nothing ever gets better long term. i’ve been feeling this way quite literally as long as i can remember, even early childhood. i’ve been seeing doctors the past few years who have either told me i will probably never get any answers or that i should stop focusing on getting a diagnosis. but i feel like i can’t accept that there’s actually something wrong with”

“Just a lil warning I talk about weight/body image. I’ve had a lot of chronic health issues come up in recent years due to a combo of underlying health issues being blamed on anxiety, depression, arthritis and my scoliosis etc and then the pandemic and particularly a pneumonia Covid combo in 2024 making me severely ill and semi bedbound for months. I’ve been diagnosed with POTS, occipital neuralgia, fibromyalgia, hyper mobility spectrum disorder, raynauds and a few other things and it’s suspected”

“Information before anyone comes in the comments and talks about the American healthcare: I'm Danish. Life in the southern (not as accepting) part of Jutland, and I've been fighting with my doctor's since 2020. In 2020 I got sick with Covid. I was so sick I nearly bit the dust, and ever since then it's been downhill. I am constantly tired/fatigued. I have sudden moments where I can't breathe. I can't walk around in public without needing to sit down - to the point I need a”

“I’m so sorry that you are going through pain and that you felt completely brushed off. 💜 Genuinely curious: Do you have a knee injury? Or is it arthritic? Idiopathic Urticaria could be related to an unknown allergen. Or it can be stress related or stress induced. (With enough stress, anxiety, or trauma your body can start physically reacting to it. By developing certain symptoms or medical conditions.) When I was in Middle School I had Cholinergic Urticaria and basically broke out in painful, i”

“I’m in chronic pain, unrested and my migraines are just getting worse. My sleep feels more like blacking out and then waking up a few hours later. Diagnosed with TMD and then again with TMJMD. Physical Therapy hasn’t helped much currently and now I’m seeking a rather expensive diagnosis for EDS. My doctor had a student in today and talked to them like I wasn’t there, and suggested to the student that it could be FND but I should seek out an EDS diagnosis first. It’s frustrating when medications”

“Hi!! I'm 16 years old and I need help on what I should tell my doctors next time I see them. My next appointment comes up soon and my main concern is about my diagnosis's. I was diagnosed with CRPS (Complex Regional Pain Syndrome) when I was about 11 from an older doctor. The next time I came, I didn't see her again and saw someone new. They then told me that it was more likely to be fibromyalgia due to my kid brain not accurately describing my pain to them. I described it as an &quo”

“For almost 4 years at this point, I've had issues with my stomach and intestine. I'm in pain, I don't want to eat most of the time. I've been vomiting blood, missed work and class from the flare ups, and I'm so tired. We've tested everything. Had every scan, procedure, test whatever to see what's wrong. Checked my pancreas, my gallbladder, intestine, you name it just to see what's wrong and they can't find anything. My mom wants to just blame it on gluten and”

“i’m still in the early stages of getting things figured out, only seen my cardiologist once, had lots of blood work and ECGs, and waiting so much more. i’ve recently developed a lot of stomach issues on top of what my GP believes is POTs. i know that it can also cause GI issues, but this past 3 weeks, i’ve been able to eat less and less, and am nauseas almost 24/7. i genuinely can’t eat an entire sandwich. i can’t finish a smoothie. i can’t even eat rice without feeling sick. it’s really scaring”

“TLDR: Multiple health issues with conflicting treatment. Navigating daily health decisions is exhausting. Feeling guilt over making the "wrong" choice when there is no good choice without a price to pay. I have several different things going on health wise and I haven't found a doctor that takes my other issues into account so I'm left to navigate them on my own. It's always "just take this". But I can't do that because of another health issue. "Well go t”

“Hey everyone, I recently had someone I know pass away, who was very young (early 20s). The person had no known comorbidies. They had been having epigastric pain for 3 days but didn't tell anyone. On third day he had vomiting too and hence seeked medical attention. The center he went to did some basic investigations (CBC, RFT, LFT, CHEST X-RAY, USG(A+P), ECG)and they were near normal except for a raised Total leukocyte count of 17000. According to the HCP of the center the person had no tende”

“Doctor is just an asshole or wildly uninformed. Palliative care literally exists for these types of patients. Their whole job is managing chronic disease and longer term healthcare goal setting, whether it be a pivot to comfort type care or continued treatment. Your doc maybe confusing palliative care with hospice care, which happens with providers more often than it should. Either that, or, like I suggested they are an asshole. You made the correct suggestion.”

“Over 10 years ago, I was sick so I put my symptoms into web md or searched them or however you use it. I can’t remember. I do remember that it said high fever or abdominal pain for 2 days and you need to go to the doctor. I was on day 4. A few days in the hospital and they figured out my appendix ruptured. My (now ex) husband was a medical professional. He still is. Totally gaslit me into thinking I’m fine despite him witnessing my symptoms progress and hearing me complain about rebound pain (I”

“I've been telling my (male) rheumatologist for a year now that I'm struggling with pain and fatigue. That I have trouble standing for 10 minutes and need to take breaks just to cook dinner. That one previously minor activity (like his appointment) would now use all my spoons for today and probably tomorrow. He keeps telling me that my RA is perfectly well controlled (see these labs!) and it is caused by my fibromyalgia. Or caused by my anxiety. Or I need to lose weight. Or it can't b”

“I’ve been dealing with intense pain for the last few years and they diagnosed me with GERD when I was 16 (pushing 20 now) but something wasn’t right. Two months ago I got an upper endoscopy with no other testing, said it was h-pylori. Since then, i’ve still dealt with worsening pain and nausea and ended up in the hospital last night from intense pain, had to get morphine and everything. Got a CT scan, and I have gastric varices, and It’s rare for someone my age and it’s developed to the point wh”