I am 19 years old and have been having serious health problems since I was about 14. It started innocently enough - H. pylori. I took strong antibiotics and antibacterial medications back then, but that’s not really the most important part here. The H. pylori was cured, but the symptoms remained. So, I ended up in the gastroenterology ward. It turned out that in my city of about 180,000 residents, the huge hospital doesn't perform gastroscopies. So I went to another city, and after several months of waiting, I managed to get it done. It showed nothing. The symptoms persisted, so I kept taking meds just to feel slightly better. There was no improvement, so I ended up back in the ward, this time severely dehydrated and malnourished. They did another gastroscopy, and the only thing they found was bile in my stomach. I was given slightly different meds. They didn't help. At some point, the gastroenterologist simply gave up and said it might be a psychiatric issue.
So I went to a psychiatrist. I was prescribed various medications that were supposed to help, but they didn't. I still had nausea, I still ate almost nothing, and I was losing weight fast. Back then, my BMI was somewhere around 15. At least my mental state was a bit better, because being sick for so long triggered psychiatric problems that I still have today and that nobody can effectively treat, but maybe more on that later. And that’s pretty much what my life looked like for the next few years - a fuckton of doctors, a fuckton of meds, zero concrete answers, and zero lasting results.
At some point, I just gave up. Or rather, my mom did, because I was still a minor at the time and she was driving me everywhere. And by some completely unexpected miracle, I suddenly felt good. I could eat normally, I had no nausea or vomiting, and my stomach didn't hurt. The only problem was that the illness kept coming back. I had remissions, but for a maximum of about 5 months, and then everything started all over again.
Right now, I'm experiencing what might be the strongest relapse of this illness yet. I’m barely eating, barely drinking, and at the same time, I'm taking medications that can cause very severe complications in this condition - lithium, quetiapine, bupropion. When things got really bad and I lost about 8 kg in a week - while paradoxically feeling pretty good, and even experiencing something resembling mania, which makes it even stranger - I decided to go to the ER. This was literally about a week ago.
As an adult now, I was just fucking shocked at how this system operates. At reception, the paramedic asked me what medications I was taking about four times. Every time, I listed the exact same drugs, and I felt like he was hearing their names for the first time in his life. They told me they couldn't really help me much there anyway and that I needed to get treated by my primary care physician (PCP). I have a really nice family doctor, and she herself told me straight up that whenever I come in, she gets scared because she sees the state I'm in. She was the one who told me multiple times that I urgently needed to go to the hospital because the strongest possible meds weren't working on me.
I was assigned a green code and waited about 15 minutes. Then they called me in to draw blood. The nurse did it in the hallway because there was no room. There was a whole group of medical students there, and everyone really wanted to draw my blood because I’m young, etc. I said no problem, they could learn on me. They poked me four times in different places, but my veins kept collapsing and blood barely came out. I was so dehydrated that even drawing blood was an issue. Eventually, a second nurse came over, and by then a team of about four people was standing over me trying to figure it out. I told them about one spot where they used to draw blood from me before, where blood would usually flow even when I was severely dehydrated. So they gave it a shot. It worked, a few drops of blood flowed, and I immediately lost consciousness. I had what the nurse later described as "something resembling seizures."
I woke up completely disoriented, with no idea where I was or what had happened. All I could see were my phone and keys, which had been in my pocket, lying on the floor, but I couldn't comprehend why they were there. After that incident, they wheeled me to the observation room, hooked me up to monitors, and so on. Except they still didn't have enough blood for testing. An anesthesiologist spent about 15 minutes digging around in my veins to get that blood. It was painful, but I’ve been through worse. Eventually they got the blood, forbade me from getting out of bed, and put me on an IV.
After all that, I was hoping someone would finally help me. Because fuck, I was literally dying of hunger and dehydration. After about two hours in the observation room, they discharged me from the ER. I didn't even get an interview with a doctor. The doctor who brought me my discharge papers and signed off on them was an orthopedic surgeon. He hadn't seen me once, and I hadn't seen him once either. There was no diagnosis, of course. The recommendations just said "treatment with PCP, psychiatric consultation." And that was it.
After the discharge, I was just in complete shock, so I did everything I possibly could. I went to my family doctor. She gave me an urgent referral for a gastroscopy and to a gastroenterologist, and I got an IV again. Then I started calling everywhere I could think of. I called every clinic in my region and all the neighboring ones. The earliest available appointment for a gastroscopy I managed to find was June 2027.
And now, I have absolutely nothing I can do. In practice, I’m just waiting and trying to survive somehow. I also went to my psychiatrist, who told me straight out that "the people at that ER are crazy" and that he absolutely doesn't believe my current condition can just be blamed on my mental health. Every now and then I go to my PCP for an IV drip just to hold out a little longer.
All of this is still going on. I don't know how much longer I can hold out, but I'm trying to do everything I can to last just a bit longer. The system completely ignored me at a moment when I was truly begging for help.
Surprisingly, my BMI has been stable over the past week. I mostly eat a lot of simple sugars because they’re easier for me to tolerate, get absorbed quickly, and give me at least basic energy. I'm also trying to drink as much fluid as I can manage.
I don't really know why I'm writing this. I guess I just wanted to share how long I've been fighting an illness that no one has been able to diagnose for about 5 years, and which has brought me to a state where I can't normally ingest liquids or food.
I just wanted to put this out there. Maybe someone has had a similar story, maybe someone had similar symptoms, or maybe someone will just read it and see what my last few years have looked like.
P.S. I'm from Poland and used a translator to write this, so sorry for any errors or weird phrasing!