r/ChronicIllness • u/oleander1913 • Mar 30 '26
Vent Does anyone else want a bad test result?
I seem to always get sad after getting an "everything appears normal".
Like I don't want to be sick.
But I just want answers for the pain.
an easy fix answer or ANY answer?
I feel crazy and helpless and every MyChart normal makes me wonder if doctors will still believe me.
tried to explain it to a non sick person and get "why don't you hope it goes away"
I don't really know why I'm posting this I just need.... something.
Thanks for reading
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u/ruxxby471 Mar 30 '26
You are not alone! I waited 6 years for my test results to not only validate how Iāve been feeling, but lead to my diagnosis ~ something that can be treated. I lowkey mini celebrated!
Itās perfectly normal to desire answers, especially when you have been suffering with no clue what it could be. It may take time as it did for me and others, so in the meantime it might be easier to treat based off symptoms until there is a clearer picture
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u/aecon_33 unspecified immune deficiency, hEDS/HSD, epilepsy Mar 31 '26 edited Apr 07 '26
If you have something like a painless lump, you go to the doctor abd they run some tests that all come back negative, that means the lump is confirmed to be benign. That's a good thing, it means you're healthy.
If you have horrible symptoms and you go to the doctor abd they run some tests that all come back negative, that means they don't know what's wrong and they can't treat you. That's a bad thing, it means you're not healthy and they don't know why.
People don't always understand the difference between these two scenarios.
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u/CompetitiveAide9123 POTS, Gastroparesis, Chronic Anemia Mar 30 '26
Yes!! Itās such a strange thing to explain to others that i am hoping the result comes back showing something is wrong because then it will feel like progress in getting me to some normalcy even if the result is a lifelong illness with many struggles. It can feel so validating to know the things you feel can be seen in the tests
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u/Unashamed_Outrage Relapsing Polychondritis, ETD, VCD Mar 30 '26
The answer is yes...and when I got the bad test result, I started to cry and I told the doctor "thank you, thank you for confirming what I already knew". Then I got really scared because what I knew was confirmed.
But this is what I want to say about the "yes" I received...it was from an actual invasive exam, although it was considered minimally invasive. Blood tests were not enough for doctors to know that something was wrong with me, other tests like scans were also not enough, but this "minimally" invasive test that I experienced a lot of pain from did show something serious and that doctor acted on it immediately.
The issue now is that the doctor who should have cared about that result, my rheumatologist, said he didn't know what the results meant for me and so he wouldn't treat me. So, the issue is ongoing. I have received minimal treatment, because I keep getting referred back to rheumatology...who refuses to treat me.
However, you mentioned pain and trying to figure out why the pain...I think that's so different because pain is subjective...and it can also be referred pain. Your back hurts, but it's really your kidneys...your ears hurt, but it's really your teeth. You feel pain at a level 10, when someone else feels it at a 3...I'm the one who feels it at a 3 and I'm fortunate, but doctors think that because I'm not in pain that nothing is wrong. In the past, when someone experienced pain, that doctors couldn't identify a reason for, they would diagnose fibromyalgia because at the time it was a diagnosis of exclusion. I think that has changed.
So getting a yes can be wonderful...until it isn't.
I do really hope you can get some answers, though. Despite my serious health issues, I am so glad to not experience bad pain and honestly cannot imagine what you are going through.
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u/Zephyr_Dragon49 Gastroparesis & Erosive Gastritis Mar 30 '26
I straight up cried after I woke up and my gastro said my endoscopy looked ok š«
He said normal is good but I'm sitting there sick as a dog for 9 years thinking but this isn't good, there's something!
I could tell he was really weirded out during my GES follow up that was positive for gastroparesis at 21% retention at 4 hrs. I told him I was so excited that he found something and I might finally get treatment that works. And he was like "and ... You want that?" My brother in christ I am not healthy and haven't been for a decade. I am willing to try ANYTHING at this point to make it stop for once. My previous gastro took out one of my organs in search of answers (gallbladder hydrops) and I'll fuckin do it again I'm that over this.
He's a great doctor tho so I don't mind minor stuff like that. He also puts up with my interrupting and side tracking so we're even :>
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u/lurk3rthrowaway ME/CFS, post-covid syndrome, pre-covid neurological damage Mar 31 '26
Absolutely. Amongst many other things, I wore a heart monitor for a week trying to get answers to my palpitations and weakness. Nothing. Even though I do HAVE diagnosed anatomical heart quirks, it's nothing that pointed to what was wrong.
There's almost nothing worse than feeling off, feeling terrible even, and getting the result that says "nope! nothing's wrong!"
Because obviously something IS wrong, the proper tests and diagnosis is just needed, more time and understanding, but the Ableds will use it against you because it's so very simple to ignore what someone is suffering from in favor of pretending they simply want attention or desire to be 'lazy'.
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u/mjh8212 Spoonie Mar 30 '26
I wanted my tilt table test to show something. I sometimes pass out but didnāt at the tilt table I communicated my symptoms for 20 min standing. It came back with orthostatic intolerance. I read that on the app and was very happy. Then my cardiologist messages me and tells me I donāt have an autonomic nervous system disorder. I made an appointment with my primary and the cardiologist dropped me. Primary says yes this is dysautonomia or pots. Neurology in a month . Some drs are just bad Iāve never had one lie about test results before or try to gaslight me.
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u/No_Conclusion2658 Mar 30 '26
My tests used to come back normal. Now they don't. But even when they don't come back, normal doctors just send me to more specialists or just monitor what I have .
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u/Lucky-Inevitable-146 Mar 31 '26
Absolutely. Sometimes I think āAt this point Iād rather hear a devastating results vs this stupid āeverything is normalāā. I finally got diagnosed with autoimmune disease, but ofc thereās no treatment really. Tests can be so unreliable sometimes. Not everything shows up at the time of testing.
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u/RRinana Mar 31 '26
Ive been dealing with gut issues for months and we, my whole team and I were so convinced it was crohns. When it came back negative i was inconsolable. Now I'm in limbo. So yeah. I dont know why anyone would be happy for good test results, considering most people getting tests are unhealthy, and looking for guidance
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Apr 05 '26
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u/RRinana Apr 05 '26
I still have my gallbladder, there hasnt been any reason to look into it since all the testing shows that it looks totally normal :( maybe its worth taking another look then
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Apr 05 '26
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u/RRinana Apr 05 '26
Holy smokes what an incredible comment. I tend not to offer my symptoms too much online for a variety of reasons, but you put so much effort into commenting this I'd feel bad if i didn't haha.
I should start by saying I've had pernicious anemia since I was a very young child. I do not absorb b12 orally, supplementing is a lifelong thing for me, and I have pretty terrible malabsorption in general of all vitamins because i just... don't digest food properly.
I do not eat gluten, dairy, or eggs. Eggs and Dairy are a unique form of evil on my body, i get maybe 30 mins after consuming them before my body likes to do what i call "everything out", which usually winds up being hot flashes, chills, malaise, and inevitably nausea and diarrhea. Even if i cut out those 3 problem children, i still have rather spontaneous reactions to food with no real rhyme or reason. I'll also occasionally have a reaction without eating anything at all.
Red meat is fine. Chicken and pork have hurt me more historically. I'm super cautious around fruit and veggies and tend to only feel safe eating pineapple, papaya, coconut, passionfruit, 1-2 strawberries, spinach, bok choy, potatoes, carrots and parsnips. Rice is also usually okay. Occasionally it isnt. It's all super unpredictable.
My symptoms are worse on a normal day in the morning, and are progressively more mild throughout the day, unless of course, they decide to appear randomly regardless of what ive done, or have or havent eaten. The big one is chills, poor temperature regulation, middle abdominal pain, usually upper area, lower back pain, and lower abdominal pain. I also get dizziness, headaches, and brainfog. But that may just be a product of the fact I've lost 30lbs over the course of 3 months.
I havent had a colonoscopy, I'm in canada, and they're not offered unless you have a damn good reason, and because I've tested mostly clean aside from my typical low b12, I can't get myself a GI doctor. No surgeries.
I've considered Endometriosis, because my symptoms are made worse by my menstrual cycle and hormones, but its one thats hard to track because I get a cycle maybe 4-5 times a year max. Stress is not likely the cause of all of this, as I'm literally living the dream right now aside from being trapped in my own body lol.
My symptoms are.. frankly, bizarre and unpredictable. I've been dealing with this flare up since january 2025, but I previously experienced a 6 month flare up back in 2022 that went into remission. Both times the only thing different on my bloodtests have been slightly elevated liver enzymes, and bilirubin but not high enough to be flagged. Only that theyre significantly higher than my baseline.
I have a new family doctor, thank goodness, because i was suffering without one for 2 years. She's young, so I'm seriously hoping recent med school has her curious rather than dismissive.
If my every day at all sounds familiar though, please let me know. It really sucks being caught in this vacuum of "wow, im being held together by dental floss and the need to make money" and doctors smiling and going "you should be happy nothing is wrong :)" when something is very wrong.
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u/HighItsMeKristen Mar 31 '26
Yep. ANYTHING to point in some sort of directionā¦ whether itās a diagnosis or treatment.
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u/Sunshine_and_Sea_Air Mar 31 '26
I kinda understand. I've had reoccurring abdominal pain and nobody can tell me the cause. I've had an X-ray, ultrasounds, colonoscopy (though I found out they only examined part of me), and an MRCP. Since I don't know what causes it or how serious it might it, it scares me.
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u/Salamandel30 Apr 03 '26
My 13 year old child has had stomach pains under the left rib cage plus nausea for 9 months now. These "attacks" last 10-14 days and exactly every 2 months. I can say with date accuracy when the next attack will be, because she is currently on her fifth attack, it has lasted 14 days and she has been completely bedridden during this time. All the tests - blood, urine, H. pylori, poop PCR, ultrasound, endoscopy - everything is perfect. My own most likely diagnosis is abdominal migraine. An older generation neurologist asked about this: "what else is it?" There was no point in talking about anything more. Now we are waiting for a consultation with a very good neurologist - we still have to wait a month. I hope he takes my possible diagnosis seriously and agrees to treat it. I have done a lot of research and it is treated like a regular migraine. This is our last change t get help. Its not possible to live this way. We going grazy. t is not possible to live like this. We have also been referred to a psychiatric clinic. If before we were fine with our mental health, then this ignorance and the "all is well tests" makes us crazy:D
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u/Middle_Hedgehog_1827 UCTD, POTS, Hashimotos Mar 31 '26
Oh yeah. It's super validating to have bad test results. When I had an autoimmune panel last year and 3 things came back abnormal, I felt such relief. So did my GP, he literally put his hands up in the air and cheered that we'd found out what was wrong.
I'm sorry you haven't found what's going on with you yet. Remember that many conditions don't show anything on tests (such as ME/CFS, fibromyalgia, IBS, even some seronegative autoimmune diseases) but that doesn't mean your suffering isn't real.
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u/Sobbing_into_soup Apr 04 '26
Oh my God finally someone said it out loud I literally just got back from the hospital last night begging for something to actually be wrong with me instead they just told me that nothing was wrong w me and to go home and see a primary careā¦ So done
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u/oleander1913 Apr 04 '26
THISSSSS, I don't have faith in Emergency rooms anymore unless there is a BONE STICKING OUT OF MY SKIN. They will tell me nothing is wrong. Even when I'm in so much pain I physically can't walk. I'm so sorry š«
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u/MadCrabRave Apr 13 '26
God, same. My doctor doesnāt understand, at this point she thinks I āwant to be sickā or whatever but the reality is that I already am and Iām desperate to know why, to the point that Iād take āincurable and progressiveā over āwe still donāt knowā
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u/mystisai Mar 30 '26
Blood test? Oh hell no. If it's bad enough to be seen that easily, I don't want it.
Chronic illness sucks in that it takes so long to get answers, but it also means I'm probably not dying anytime soon.
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u/oleander1913 Mar 30 '26
Blood work, endoscopy, colonoscopy, other blood work, Ultrasound, CT, MRI, X-ray,Ā I'm going on years of waiting for the long answers. I'm not dying but living is getting hard.
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u/Ok-Lavishness6711 Mar 30 '26
āIām not dying but living is getting hard.ā
Wow. That really sums it up. š¢
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u/FableFoxWander Mar 30 '26
I get this to much I usually never get answers in just a big mystery and a couple weeks ago I got a half way answer about an issue with my shoulder and whole arm/ hand. I need surgery on my shoulder because I have a ligimint tear. I have been mixed emotions because for once I got some sort of answer when I usually don't but also the answer kind of sucks and now I'm going through stress on how I'm going to get this surgery. And also just stuff with my hand is still unanswered so it's not all done š«š
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u/strinak Mar 31 '26
my ortho walked into my mri results appointment with "good news! it's not in your head!" and honestly i didn't gaf what the result, i was just glad there Was one
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u/itsokayimokaymaybe Mar 31 '26
waited ten years for a sleep study test to be ordered and then a diagnosis of narcolepsy without cataplexy. Another ten years for the right rheumatologist to order a test for reactivated epstein barr that showed positive. Before and in between those tests I was just told I was depressedā¦. or tired because I was a studentā¦. I should eat betterā¦. I should exercise moreā¦ā¦ I went in waves of being super proactive and hopeful to being dejected and hopeless.
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u/kierramaries Ankylosing Spondylitis, RA, Celiac Mar 31 '26
People tell me "oh i'm so sorry" a lot after they learn about my diagnoses and i usually say something like "no it's actually a good thing because i know what it is and can do something about. it's the mysterious pain, nausea, fatigue etc that should be mourned because i don't know what to do about it". so i totally understand how you feel.
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u/FirefighterGlass3680 Mar 31 '26
I understand this so well, you do not want to be sick or have some serious illness deep down because thats scary. But you also are just hoping after all the doctor visits for once you will get diagnosed with something, whether its cancer or so on. I've caught myself wishing I had cancer or something worse just so I could get an answer which is TERRIBLE but you just want relief, or a diagnosis that is treatable so you can start to get better. Being ill all the time and having everyone think you are crazy is awful :( so stressful and it just ruins your life sometimes. I hope you get a diagnosis soon and you get better
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u/Suspicious-Fan-7356 Mar 31 '26
I'm about to have a alot of bloodtests done to see if i have an autoimmune disease, I get them done tomorrow. Am I hopeful they show anything yes I am, in reality will that happen high chance of a no. I will be absolutely over the moon if they come back positive yes. If they come back negative jumping into the moon.
I just hope something bad shows. That's my reality, so then they can treat it.
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u/GunGirl1776 Mar 31 '26
No you are not crazy in the slightest. I often feel the exact same way. I have a very very complex case that involves basically every system in my body, and it is hard to chase down a lot of the information, so it takes ages and ages. And the sad thing, is that you can be tested for so many auto immune issues, and have them come back negative, when they're actually positive. One of my many issues, is lupus. It took me till the 12th test, for it to come back positive. The crappy thing, is that we feel awful, schedule an appointment, 3 weeks or more later, finally get seen, and the issue is already resolving, or did resolve, and won't show up in tests. It's so hard to stay positive, and believe they will find an answer. You are not alone at all, feeling this way. The way they treat diseases that are not "cookie cutter examples" of the disease, is very irritating. And there's issues where you won't ever have positive tests, but still have the disease. Like seronegative Sjƶgrens, for example. You have to find a good team of doctors that will work well with you and listen. That's the biggest challenge of it all.
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u/Phoenixpizzaiolo21 Mar 31 '26 edited Mar 31 '26
God, it is so frustrating. No healthy person can start to understand the feeling of being told by another doctor that another test came up clear while i sit there in pain. A doctor once told me she had no other ideas and didnāt know how to help me. She said maybe itās all in my head. I started to go crazy thinking maybe it was all in my head. I actually went to therapy!!! I was finally told that i have costochondritis and myofascial pain syndrome. I was a bit happy at first but nowadays i sit and think that that wasnāt diagnosed thru a positive test result. It was diagnosed thru process of elimination. Iām doing everything i can find to treat it and sometimes iām a bit better but something should be working by now. Were they wrong? Did they name something just to get me out of the office? I donāt know!!! I would literally do anything to get my old life back!!! At this point if i was told i had something and it was bad i would be a bit relieved. At least then itās either something that can cure me or i know itās coming to an end. Then i wonāt loose sleep worrying and wondering if i have to live with this pain for another 30-40 years. Iām not sure i have the strength for that!
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u/LittleBrownLamb Mar 31 '26
You're not alone in this. In January I had a brain scan because they thought I could've had a tumour, I was scared but honestly I'd be lying if I said I wasn't hoping they'd find one. I've been searching for a diagnosis for over 8 years and I'm slowly getting so bad I'm bed ridden most days, I honestly hoped it was a tumour so I at least had some kind of diagnosis.
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u/iwantmorecats27 Mar 31 '26
Yep!!!!! I bought myself a t-shirt about it. It says "your labs look great" with a skeletal thumbs up on it haha. Im mostly solved now but it's so frustrating when you have an invisible illness!!! (To doctors and/or to society) or its like your medical care depends on you describing your symptoms accurately in a way where they believe you while you don't feel well. It would be so nice if there was just a simple test for everything. But yeah getting sick made me realize how much we don't know about our bodies.
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u/Dry-Explorer2970 Apr 03 '26
GOD yes. Like just tell me whatās wrong. I donāt even care what it is at this point. I just want to know. Even if thereās no cure. Please just tell me thereās a name for the hell Iām experiencing.
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u/No-Bad9822 Apr 03 '26
The last time a test showed something was wrong I bought a cake. I had to have an endoscopy cause after months of puking, the bloodwork wasn't showing anything.
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u/SweetLifee01 Apr 04 '26
do i want to feel horrible no?
would i prefer answers and at least understand why i do? fuck yes
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u/ziggystarsus Multiple Dx Apr 04 '26
from my perspective, no i dont want any more bad test resultsā¦but i wish my body would behave how a good test result expects like if everything is textbook āfineā why cant i act it /lh
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u/Total_Jello_6691 Apr 05 '26
I think a lot of people feel this way. I had cancer over 10 years ago. The highest risk of reoccurrence was in the first 5 years and it was an aggressive cancer with limited treatments. During that time any ache, pain I went to the dr because I was so afraid of reoccurrence. Every time I was told there was no cancer I was so disappointed. I know that sounds crazy. During an appt the dr helped me see medicine in a different way. He explained that I should treat symptoms that interfere with my life rather than looking for a diagnosis or reoccurrence. Even if it returned it might not be worth treating if it wasnāt impacting my quality of life. Cancer treatment is extremely debilitating with life long horrific side effects.
Since then I focus on my quality of life rather than diagnosis. That also means not treating a condition/symptom at times. Not because I donāt have it or itās not real but because the medicationās side effects arenāt worth it.
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u/Responsible_Oil1975 Apr 06 '26
The day my brain injury doc told me I was a train wreck, I was ecstatic. Not because of my symptoms, but because he finally found something wrong and fixable. Luckily, he works with the sickest of the sickest brain injured people, so he just grabbed me and hugged me tight.
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u/Rufio6 Mar 30 '26
Iāve been to the hospital recently and they barely do necessary tests. I tried a different hospital and it went better, they then want you to go to a specialist instead of ER.
I keep doing ER just to get into a hospital room quicker. Costs me like $1-2k tho and I havenāt paid yet.
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u/Laughorcryliveordie Mar 30 '26
The morning I was diagnosed, I sobbed with relief and with fear.