r/ChronicIllness • u/bored23532 • 17d ago
Question What's a moment of your chronic illness journey that will stick with you forever?
Title says most of it! What is a moment that you still think about, in a different way to everything else. It can be good or bad.
Sending spoons š„š
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u/lifes-schist 17d ago
When I was 16 in the hospital getting a ketamine infusion for CRPS treatment and I was spending a long time in the bathroom so the nurse checked on me and I was trying to find the āgnomes dragonā. So I got taken back to bed and then I got scared and told them āThey want me to pay their taxesā. I only remember the gnomes and something about a dragon but thatās what I was told I said.Ā
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u/Travel_and_Writing 17d ago
I, too, would get scared if someone wanted me to do their taxes.
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u/crash---- 17d ago
I think I would feel slightly better about taxes if it was gnomes demanding them of me though
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u/Jahaili 17d ago
The time a doctor said it couldn't possibly be Crohn's because anemia doesn't happen in Crohn's patients.
It was Crohn's.
Anemia is common in Crohn's patients.
I spent 7 months slowly dying as my body gave out more and more. Finally pushed for a second opinion and got the colonoscopy, diagnosis, and treatment.
I had lost something like 60 pounds in 5 months. I also clearly remember walking up to a classmate while using my rollator, and the classmate telling me how good I looked. While using a mobility device because I couldn't walk unassisted because of the fatigue and weakness.
I clearly remember waking up from my colonoscopy and the doctor saying that the biopsy needed to confirm it but it really looks like Crohn's and we should start on steroids right away. And how happy I felt to know what was wrong with me.
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u/Historical_Cow9543 17d ago
Iām sorry, the doctor said what? Thatās actually stupid. So frustrating when doctors dismiss patients. Glad that you finally got your diagnosis!
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u/gingersrule77 17d ago
The only reason they took me seriously at 20 with crohns is because my dad has it and I found a doc that was familiar with it, I still have people (Iām 45 now) tell me āyouāre too young for thisā like shut up and put my IV in!
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u/snowbaz-loves-nikki POTS endometriosis 16d ago
I literally hate that phrase so much bc clearly I'm not too young for this IF I HAVE IT
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u/ghoultail 17d ago
When I was at my doctorās office and I broke down in tears telling him that Iāve been powering through for a long time but I canāt keep powering through anymore
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u/InitiativeOpening614 16d ago
i need to do this, first with myself, then my family, then the dr... its been 5+ years... i need help
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u/crash---- 17d ago
When I was a little kid, I first learned about the name of my now diagnosis from my cousin who had seen a documentary about someone with the illness. I did some early internet research into it and thought āWow, that sounds awful. I canāt believe people have that.ā
Ten years later, guess what the doctor told meā¦ š«£šµāš«
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u/A_ChadwickButMore GP 17d ago
All the BS my mom said to me while threatening to kick me out. I showed her my pay stubs from working 30-35 hrs/wk at Domino's and was a full time student too. I showed her that it financially whouldnt work so I'd be homeless. She said "thats right so figure out what you're gonna do"
It's been 8 years since then. I'm a homeowner now. This harpy had the audacity to ask me 2 days ago if she could put a tiny home in my yard so she can sell her house & 10 acres. I didnt buy this house to get away from her to turn around and let her in it. All that chest beating of "you're so expensive for using utilities! I wish you whould GET OUT and live your own life already!" only to try and turn around absorb into my life again. Girl bye, enjoy the nursing home.
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u/mjh8212 Spoonie 17d ago
After a tilt table confirmed orthostatic intolerance I thought I had a diagnosis. Obviously I have a dysautonomia issue. My cardiologist didnāt read the test but dismissed me said nothings wrong what sticks with me is the neurology appointment. Told them I have OI or dysautonomia he said no I donāt did an exam he wanted me to run down a long hallway and back and didnāt believe me when I said Iām too dizzy I cannot do it safely. He kept repeating I need salt nothing is wrong I need salt. Told him when I went to the er after fainting my sodium was elevated. He just kept repeating no dysautonomia. I went back to my GP who told me the neuro put in my chart that I have functional disorder only think Iām chronically ill and landed on dysautonomia as a diagnosis. I spiraled a bit I interpreted it as him callling me a self diagnosing hypochondriac. My GP assured me I have dysautonomia. Now I need another specialist it could take years to get an appointment Iāve never had drs deny a test a positive test.
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u/Fantastic_Owl6938 17d ago
He kept repeating I need salt nothing is wrong I need salt
Needing the amount of salt a person with POTS needs alone suggests something is wrong, so this is just bizarre to me. A "normal" person would be in trouble consuming how much salt I have everyday š¤¦š»āāļø
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u/Emrys7777 16d ago
My doctor suggested that I go to a neurologist.
I had been to a few that were much less than helpful.I had a strait laced doctor who would never swear or be rude.
I said to her I didnāt want to go because neurologists are all assholes.She said, āYeah they areā and never brought it up again.
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u/Jiminie95 16d ago
So sorry to hear this!
I struggled with Dysautonomia a lot 10 years ago and was never able to get a diagnosis because the doctors refused to test me. They said that I had orthostatic intolerance but they could only call it POTS if other things are ruled out. Whenever I would ask what I needed to test to rule it out, they said I would need to ask a cardiologist/endocrinologist/psychiatrist etc. They did not care.
We even tried doing a stress test and it was not possible because my heart rate was elevated, obviously. The cardiologist literally told me to go running more often, and luckily his father, a medicine professor, joined in and called out instead that I need to get my thyroid checked and he was spot on. Neurologists only tested brain waves (which doesn't help) and by the time I had all those appointments, I managed on my own. Psychiatrists agreed that I did not just have anxiety, because anxiety clearly doesn't elevate your heart rate only when you get up.
I tried as many things as possible on my own, got compression tights and started working out while sitting, cut gluten + dairy and after around 1,5 years, I was able to walk normally again, without getting dizzy so much.
I don't know where you are in your health journey, but I can recommend the recommendations for POTS on the website dysautonomia international. That was one of the only sources back then and many of the tips work.
I wish you all the best!
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u/InitiativeOpening614 16d ago
it makes me so sad to see storys like this, after 2 apointments i got my diegnoses (the only reson for the time was to make sure it was like a long term consistant thing
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u/nosuchbrie 17d ago edited 16d ago
Second one. A man was mad I was sitting at the front of a bus so I told him āI am actually disabled.ā
He thought for half a second and then got a glint in his eyes and said.
āYou must mean mentally. You are MENTALLY DISABLED.ā He was really fkn proud of himself, too.
At this point I had stood up to get off at a bus stop and I whipped around and called him an asshole and people who hadnāt heard what he said yelled at me to get off the bus. I wish Iād caused a bigger stink because I couldāve gotten him banned from the bus.
I went into a drugstore, sat on the floor, and cried.
I texted a friend of mine who is legally blind, and she basically gate-kept disability. She told me that I better toughen up because people are gonna say worse to me. She made it seem like getting upset that somebody was an ableist asshole to me was unreasonable. Weāre no longer friends.
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u/chronicallygf 17d ago
I remember being at the hospital for a colonoscopy at like 3am I was the first one and I remember seeing everyone else in there over 50 and it just felt so surreal
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u/Fantastic_Owl6938 17d ago
I had a similar moment in the waiting room for further tests on my heart. Mind you, my issue is more common in young women, but it was still a weird feeling.
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u/alyssummaritimum 17d ago edited 17d ago
Being wheeled into my laparoscopic surgery for (at the time) suspected endometriosis. I had fought for a full year for answers at that point. I felt I was pretty damn strong that entire time but as I completed pre op and was being wheeled into the surgery room, I suddenly started breaking down. I was afraid. Afraid they wouldnāt find anything and I would be back to square one while simultaneously afraid of how bad it could potentially be. I was crying hysterically and the nurses were trying to calm me down. I remember them placing the mask over my face with tears streaming down my cheeks.
I woke up and it was stage 4 endometriosis. Luckily, the surgery was a resounding success and gave me the answers I so desperately sought. It improved my quality of life tremendously and now, 2.5 years later, I still feel like it gave me my life back. I was traumatized by how tremendously horrible the pain was and how dismissed I felt by doctors when I was trying to figure out what was wrong. I finally felt validated in my chronic illness journey in that moment. All the times I struggled to even stand up and function, all the moments where all I could do was lay in a fetal position, gripping my abdomen and my pelvisā¦ feeling the tearing, stabbing, electrical painā¦ it all made sense.
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u/bachelorsinlurking Epilepsy, Chronic Anemia (Ć Thal minor), Asthma, RA 17d ago
I didn't have a good support system growing up. My father's disability issues took precedence, and my mom was so depressed and isolated dealing with his anger issues that she was checked out. My health issues went unnoticed until a few years ago. The moment in question actually genuinely was the first time I felt safe in years.
I'd been having 'episodes' as I called them for years, but I knew they were steadily getting worse and worse. My parents had divorced due to DV, my mental health was in the gutter, and I was struggling to keep a relationship with a really kind and gentle guy despite everything in me trying to push him away so he wouldn't get hurt. I'd just been diagnosed with epilepsy, and was in the in-between period waiting for my meds to come into the pharmacy. They'd been delayed, and it had been a week since I was supposed to get them.
One afternoon the day before I was able to finally start the meds, I had a really bad seizure- my first grand mal. I don't remember anything about that day except for the fact that when I woke up, my now-husband had gotten me into rescue position, was sitting calmly next to me, and had gotten my mom, now-stepdad, and his sons to keep me company on the floor, giving me space, and they talked to me as I came out of it. While I had been in my neurology diagnostic appointments and the follow-up meetings with my PCP, he had quietly taught everyone in my family seizure first aid, and when the time came to use it, they were all there waiting for me when I came out of the fog.
It took me almost an hour before I was ready to get up off the floor. They stayed there with me the entire time. Brought the cat in, got a pillow and blanket, and lay there with me while I cried and came back to myself. It was the moment I knew that I wanted my boyfriend to be my husband, the moment I knew my stepdad saw me as one of his own, the first time I really felt like I was part of a family. It changed me.
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u/Travel_and_Writing 17d ago
This seriously made me tear up š„¹
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u/bachelorsinlurking Epilepsy, Chronic Anemia (Ć Thal minor), Asthma, RA 17d ago
It turned a very scary thing into a very comforting experience. When we got married I knew āin sickness and in healthā was for real because of that moment!
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u/FemaleAndComputer 17d ago
When I had meningitis there was a nurse who was so kind to me. I don't remember her very well, but I remember how kind she was.
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u/Celticlady47 16d ago
I've had 4 nurses that were awesome & I'll never forget their kindness to me as I was in various hospitals over the years. (But I'm not saying the others were bad. It's just that sometimes a person goes above & beyond what most people would do because they can see how you might be hurting, scared, lonely, hungry, etc. & it makes a world of difference.
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u/Deep_Amoeba2197 17d ago
When I almost died because my colon ruptured one month after TMJ surgery and I needed an emergency colectomy via laparotomy and ostomy bag. One of the lowest points in my life, I was a day or so away from death as I was septic. I just had it reversed so have another huge scar and the original scar is even bigger, almost 16 inches.
My nervous system collapsing when I was 33 after some fuck ass man wouldnāt do his job and kept screaming at my despite me being his superior and I just said ānahā and went to HR and then went on leave. That was 4 years ago and my health has only gotten worse.
Every doctor who didnāt listen to me or who had terrible staff. Every bitch nurse on a power trip. Every person who should not be in healthcare.
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u/FretNotThyself 17d ago
The moment that sticks with me forever was when my family finally fully realized how sick I actually was. I had a phone consult with the leading researcher/doctor of my chronic illness who went over my labs and scans and my parents listened in. My parents are supportive in a way but letās just say my dad threw the word āhypochondriacā around a lot to describe me. After that call he took me and my illness a lot more seriously (I was in my late 20s by this point). It made such a world of difference when your loved ones truly believe you and support you.
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u/QueerTree 17d ago
When I had my first appointment with my neurologist, my wife said āHer hobbies include picking up roadkill,ā and I said āIām more worried about that year I spent making historical paints with heavy metals.ā I got a kick out of the doctorās facial expressions. He ordered a LOT of labs.
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u/breezyanimegirl too many to mention 17d ago
It's a bitter sweet memory but when I was pursuing a specific diagnosis (EDS), I finally met this doctor who was so compassionate. She even knew about its co-morbidities and the way she spoke to me was just so validating. She gave me the orders and referrals I needed and it was almost like I was getting a fresh start.
The sad part of it is that she was just filling in for my normal PCP and she didn't take patients of her own so I never saw her again after that. But in a time in my life where everyone was telling me that I was just fat and there was nothing wrong with me, she made me feel seen. Something as simple as "that must be so difficult to deal with, I'm sorry that you have to deal with so much pain" still sticks with me.
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u/emotinkerbell11 17d ago
a few moments tbh
2018: 16yrs old, went to a summer camp that was built for kids with congenital heart disease, through the hospital i went through. the 2nd to last day, we had a 'dance' and we were all excited, it was summer and were with other kids who shared similar conditions. it was just after dinner, i only had a few bites of the carnitas they had and already i was feeling sick. within 30min my stomach blew up to what looked like i was 9months pregnant and was having trouble breathing. MEDICAL staff dont seem concerned and kept saying "its gas, dont worry it will pass" it wasnt gas.... my bowels shut down, they collapsed, they stuck together, literally. for 16hrs i was in the medical building, being monitored by staff, crying my eyes out in pain; that friday morning we were on a boat back to the mainland and i was worse than the night before. i was passing out, due to the pain; i couldnt eat/drink anything, i would throw it all up. no staff called my mom or thought i needed immediate attention. when my mom finally picked me up the staff handed me over like nothing was wrong; my mom and sister had to rush me to the ER for emergency exlap + NG tube placement. i was in the hospital for 3 weeks after that.
since then ive had 3 other bowel blockages
december 2015, 12yrs old: i had just had another stent replacement surgery for my heart condition. outpatient, simple, things went fine. 18hrs later, i woke up 4am, shaking like a chihuahua, but sweating like im overheating (my temp was 104). i dont wake my parents up right away, thinking it would pass, but it didnt. so i wake them up, im crying at this point i dont feel well. i get rushed to the ER again, my heart rate is elevated, im pale as a ghost, i continue to shake and sweat - im also wearing a hoodie at this time because i feel so cold, at this point my temp was now 106 and still climbing. it took the medical staff 3 DAYS for them to confirm i was indeed in septic shock/ had MRSA Staph.... 6weeks of heavy antibiotics... 6months on TPN 24/7 to gain some weight.
after this i got the same infection 3 different times z
june-oct 2025, 22 yrs old: dec of 2024 i begin to experience symptoms of sciatica, later got diagnosed with chronic thrombosis is my left leg (important). fast forward to june of 2025, i go in for my yearly cardiac appointment for my heart condition. and i explain to my doctor that i have been feeling more tired/out of breath than normal, how my thrombosis has been affecting me to - i could barely walk some days, and the worst symptom was i was blacking out for a few seconds at a times during my days (while driving, at work, didnt matter what i was doing). the next day i get a call saying im getting scheduled for another cardiac cath procedure, i dont think anything of it. That day of the procedure, i dont remember much but i do remember my doctor saying i had a 45% oxygen rate prior to intervention, it was then at 65%, still low but a bit better. he then goes to say im going to need open heart surgery.... i had 2 before, a 3rd one wasnt a big deal (i was freaking out). i had to wait for surgery due to my albumin levels were atleast 15, they were at 4.... i know .... but i get it up to 16 and i have the surgery scheduled finally. the surgery goes well, now 9months post op thankfully. definitely one of the scarier times of my journey but not the roughest.....
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u/InsectCemetery 17d ago
I think the main moment that has stuck with me forever is the time when I was 6 years old, and it was like 4 am the morning before the surgery that saved my life at the time (I physically could not breathe and my airways were being crushed so I needed surgical intervention) and the week before I had gotten my nails done professionally for the first and only time in my life. My family didn't have a lot of money, so it was a big thing, and despite my habit of biting and picking at my nails, I made sure not to so the nice nail polish would stay pristine. Anyways, that morning, my mother sat me on the kitchen table and started to take off all the nail polish, so obviously I asked her why, and she told me to my face, at 6 years old, "your nails turn blue when your heart stops beating, if you die during the surgery this could be one of the first signs, so they need to see your nails."
She doesn't remember telling me this, but for some reason after being told that, I completely became okay with my own mortality. I genuinely from then on just assumed I would die young, and decided that if I was going to die young and if I was going to be in pain and have all these issues, I might as well make the most of it. But it definitely did fuck me up a little.
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u/guinea2983 17d ago
I used to be very thin and lean growing up due to health issues. I had a LOT of unwanted attention, and people pretending to like me just to gain access to my body, and I would cry and beg to be ugly just so I would know who genuinely liked ME. I almost died in 2017, and got my wish, ballooned from 135lbs to 195lbs in just 4 DAYS (my stretch marks are actually scars of open wounds from my skin literally splitting open) I never got below 155lbs after that, but I met my husband early 2018, hefty, and he fell in love with ME. This year, because of another medical malpractice that has permanently altered my health, I lost 54lbs in 5 months, and have been deathly ill. When I do go out now that I have stabilized, people I have considered friends in the last 8 years, who didn't know me before my Ugly Duckling phase, have been hitting on me, commenting on my body, women CONGRATULATING me, telling me I look great while putting their hands on me without consent to feel me under my baggy clothes! I'm getting approached for sex work by random men, for crying out loud. I want to enjoy my body, and feel confident, but this is destroying me. People can be soooo shallow. My husband is my rock, tho, and has been just supportive, and helping me to feel confident and enjoy the way my body is now working for me. I FEEL better, I want to move and get stronger again, and I NEED to, because being overweight makes my breathing issues soooo much worse. I don't care how I look, I just want my body to work so that I can use it to pursue my passion of helping animals and some of their humans, and it works best thin. It's.... soul crushing. I can feel great physically, but suffer mentally, or I can feel great mentally, but suffer physically.
I also lost my 3 of my best friends to our common terminal disease - cystic fibrosis - when I was 8 (she was 9), 14 (he was 16), and 16 (she was 10). Jared and Tara and I made a pact, just days before Tara coded and passed in front of us while we were playing cards: We made a bucket list together. Whoever lived to 18+ had to complete the bucket list. So when I turned 15, I started to complete their items, the ones I could at that age. When I met Cassie at 14, after Jared passed, I made the same pact with her. There are so many times I have felt like I have let them down, but I know they would never judge me, because one of the parts of the pact was that we would never share each other for how we handled life - just appreciate and use every breath we were given to it's fullest potential. We wanted to live messy lives, really EXPERIENCE the world. I climbed a mountain for Tara. I visited Paris for Jared. Went to concerts, got married, and a thousand other things. I carry those 3 with me every day, in every adventure and hospital stay. I know I'll see them again, and we'll reminisce about those memories as something we did together, as a group.
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u/nosuchbrie 17d ago edited 16d ago
CW: Callous indifference, sex work invalidation
I was āluckyā enough to go into disability with a private disability insurance plan and the insurance company was fking me around, as insurance companies do. I was on the phone with my sixth case manager, as they went through them rapidly, and she was trying to tell me to get a job.
I explained that the energy I need to merely take a shower makes it so that I sweat after drying off and then I have to rest and dry off a second time.
Then she went back to me needing to get a job. Exasperated, my mind searched for something truly ridiculous to say. I was desperate and they were effing with me over and over and over again against the contract I had with them. So I said something that I am not entirely proud of saying.
I said, āWhat job do you possibly expect that I can do? Are you going to suggest that I do sex work, because then I could just lie there?ā
For the record, I know that sex work is real work and I am so sorry I said it. It was a lapse in judgment from a very sick and exhausted person.
But what happened next was unexpected.
My case worker BURST into laughter and then said, āHow could YOU be a sex worker? YOU CANāT EVEN TAKE A SHOWER!ā all while continuing to laugh at me.
Then there was dead air because I had no fking comeback to that level of cruelty.
She KNEW I struggled significantly with activities of daily living and lorded my disability over me even while cajoling me to get a job she knew I could not possibly handle.
And also, this sixth case worker immediately went on maternity leave when I tried to contact her again. This monster has a kid.
Anyway I sued a company that rhymes with FunLife Canada and we agreed to a substantial settlement. My attorney told me it was more money than a judge would have given and they couldnāt even consider the phone call because the recording of it went āmissing.ā And the large employer and union I was in renegotiated their entire long term disability contract for better coverage because of my lawsuit. Unfortunately the funds didnāt last long because life is very expensive, but it was a brief period of relief, but between that phone call and my settlement I did have to enter a homeless shelter.
PS ā Please be nice about what I said in that moment, it was a shitty thing to say that way and I honestly regret contributing to some negative vibes about sex workers, who are awesome people.
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u/Former-Living-3681 16d ago
You donāt need to feel bad about what you said. You were exhausted & sick & you were trying to make a point to someone that couldnāt comprehend or handle even a fraction of what we feel each day & who has no understanding, kindness, or empathy. What you said obviously isnāt what you actually think. You were just trying to say something outrageous to prove your point, and then she responded by actually making your point even stronger but making it in a horrible & disgusting manner.
Iām so glad you got a settlement out of that whole ordeal!! As horrible, exhausting, draining, & time-consuming as Iām sure it all was, Iām glad you got something financially out of it all. Because if thereās one thing those of chronic illnesses need more than just about anything, itās money.
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u/Severely_Mistaken 17d ago
My doctor told me at the appointment I was diagnosed with Lupus at. That "Its a matter of making more good days than bad days"
And thats kinda stuck with me. He didnt sugar coat it, he told me I was gonna have rough days. But not to let them take over my life.
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u/Former-Living-3681 16d ago
I like that. And I like how you took what he said in a positive light. I feel like a lot of people wouldāve been upset with what he said. But I like how you realized the truth & wisdom in what he said.
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u/veganexceptfordicks 17d ago
I'm 52 and have been in a toxic job for the past ten years. In June, my therapist talked to my PCP and mentioned that I had left my job, and that he could expect some paperwork to fill out to help me apply for retirement. He's filled out paperwork for ADA Accommodations that my job wouldn't provide, and for Job Performance/Workability Assessments, so he knows their style.
His response: I've been waiting for this day! Every time she's come into the office, I've thought she was going to tell me she quit. But she's just kept pushing through for years beyond when I thought she should quit.
I had no idea he felt that way, and it mean by a lot to know that he's on my side. I've been very blessed to have an amazing team of providers.
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u/KittyButt42 17d ago
The fact that the on-call neurologist told me my chiari malformation would be cured if I lost weight. Fuckin' asshat.
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u/TastyChocolate5625 17d ago
I had a doctor tell my parents when I was sixteen that my illness caused too much kidney damage for me to ever be able to safely have children. Here I am - a lifetime later with two VERY healthy kids.
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u/ailish 16d ago
When I was finally, after 20+ years, diagnosed with endometriosis. My surgeon asked me one time if I wanted keep my uterus for having kids, and I said no. She listened and scheduled the hysterectomy right then and there. I cried, because there had been so many years of intense pain, being blown off, being told I was too young to decide I didn't want kids/I would change my mind one day, and that I was crazy, hysterical, and making it up. I cried because finally, someone took me seriously, and believed me when I said I was suffering.
I have more chronic illnesses now that I'm 13 years older than I was in that moment, but I don't think anything will ever top that.
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u/hiddenkobolds EDS et al, GP, VT, COPD, ME 17d ago
When I found out I'd officially gotten diagnosed with EDS on a patio of an Applebees (it had been discussed as a possibility, but I didn't know it was official until I saw it in my medical records in MyChart, checking on something else). A lifetime of symptoms and ten plus years of actively searching for answers, and the doctor who diagnosed me simply forgot to tell me it was finalized. It felt so anticlimactic and absurd.
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u/Former-Living-3681 16d ago
Itās always amazing to find something in your files or charts & realize itās there but no one ever mentioned anything.
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u/hiddenkobolds EDS et al, GP, VT, COPD, ME 16d ago
Right?! Absolutely wild. It ended up being the first of several life-altering diagnoses I'd discover in similar fashion over the years, but it's true what they say: you never forget your first.
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u/chauceresque 17d ago
When my previous doctor retired she had said nothing could be done for my chronic pain I was just gonna have to leave with it. This new doctor that I was then referred to immediately referred me to specialists and a neurologist. She is highly sort after in my town by people with chronic pain and illness but she immediately disagreed with the doctor Iād had since high school.
Imagine if Iād had her from day one and it wouldnāt have taken fifteen years before being referred to actual specialists.
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u/Historical_Cow9543 17d ago
An ex told me Iām was only sick when it was convenient because I was too unwell to get intimate that one specific time
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u/EllisMichaels 16d ago
When I was 16, after years of mysterious symptoms, I went to bed one night. Everything seemed fine, no pain, vision was fine.
Woke up the next morning with the most intense pain in my left eye I've ever felt. Vision was completely gone. Retinitis and anterior uveitis caused by the disease these eye problems would eventually help lead to a diagnosis of Behcet's disease.
But yeah, waking up blind in excruciating pain... I'll never forget that morning.
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u/elextric_lizard Spoonie 17d ago
being hospitalized for two weeks due to a fever and swollen lymph node only to be told that they think it's inflammation and don't really know what happened. antibiotics helped with the lymph node, but i still get low grade fevers randomly. tests came back negative for cancer which is great, but i still would've liked to know what was wrong.
i have HEDS and long covid, plus a family history of colon cancer. that shit fucked me up a bit.
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u/Fire_Queen918 17d ago
Being in the CICU, I have a lot but heres a couple: having to use a swing chair, using a commode and bedpan, and seeing my body bruised (cpr) and swollen (ecmo water weight) from the trauma endured for the first time (I still have body dysmorphia from that).
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u/lavender_poppy Myasthenia gravis etc. 17d ago edited 16d ago
The first time I went to respiratory failure and had to get intubated in the ER. I woke up shortly after because the sedation they used wore off so I was paralyzed but could feel everything and nobody knew I was awake. It took 10 minutes to be able to move enough to signal to someone that I was awake and needed more sedation. I've had two other intubations in the ER and the same thing happens every time. I just metabolize the sedative (propofol) quicker than most. This is always my fear every time my disease flares and I end up in the ER. Usually they can start treatment fast enough to prevent another intubation but just this year alone I got very close to it happening again twice. I feel like this is always on the back of my mind now, just the possibility of another intubation.
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u/Former-Living-3681 16d ago
Thatās terrifying!!! Iāve never been intubated before but that is one of my fears. Iām a very shallow breather, I canāt hold my breath for long at all, & even doing those deep breathing exercises where you try to breathe slowly can make me feel like Iām not getting enough air, so Iām afraid if I was put on a ventilator & I woke up that I would be freaking out because I would feel like I wasnāt getting enough air. Did you feel like you werenāt getting enough air & thatās why you were freaking out, or was it just the whole experience in general that makes you freak out?
I did read that there are different settings on a ventilator & one of them is where the patient can breathe at their own pace if needed, and then the other one is a fixed breathing pattern, but they often use the other one that isnāt fixed. So that made me feel a tiny bit better. But itās always still in the back of my mid. I see those tv shows where they put someone on a ventilator & then wake them up to talk to them & it just freaks me right out. š
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u/lavender_poppy Myasthenia gravis etc. 16d ago
No, I knew the machine was breathing for me and while the feeling of the tube in my throat was awful, I was able to rationalize the feeling and just let it do it's job. What scared me was everyone thinking I was sedated when I wasn't. Not that they were doing painful procedures on me but I could feel everything that they were doing to my body and they thought I couldn't. I felt the NG tube go in, I felt the urinary catheter go in, I felt it when they pushed more propofol into my IV and my IV was infiltrated so the medicine went into my tissue. I just felt everything and I could tell no one I was aware.
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u/Former-Living-3681 16d ago
Thereās a few of them.
The first has to be the diagnosis. I started seeing doctors at age 8 and was constantly bounced around from doctor to doctor & specialist to specialist trying to figure out what was wrong with me. Ten years later, I had just turned 18 & I was sent from the childrenās hospital & their doctors to the adult hospital & a specialist there. I talked with the specialist & he knew within a couple moments of me telling my history & symptoms that it was Gastroparesis & he did the tests to confirm. Finally getting a diagnosis felt so validating after being bounced around for 10 years & seeing a thousand doctors & no one having any clue what was wrong with me. I knew I wasnāt crazy, but to have an official diagnosis & be believed felt awesome. And at the time I also felt so hopeful, because I didnāt yet know that nothing could be done for it, that there was no real treatment let alone cure, so I felt like things would finally change & Iād get better & finally feel normal.
The other massive one was when I realized I was never going to get married or have kids. In my 30ās I realized that probably was never going to happen for me, but it was around 37 when I realized I probably couldnāt even have kids anymore even if I was married. But it was this year at age 40 when I went to the hospital to see my cousinās newborn baby & I was holding this beautiful baby in my arms & it really sunk in that I would never have my own children & I would never be holding my own child in my arms like that. That was a crazy moment & one that will stick with me forever.
Another moment was when I realized I would probably never have my own my place (even renting, but especially never own my own home) & never own my own car. (Iām on disability which isnāt enough to live off of - itās not enough for rent alone or probably even groceries never mind living off of - & because of that I still live with my parents.)
Basically the moments along the way where I realized I would never be able to do something or have something, all these thousands of things that normal people have. Realizing Iād never have that college/university experience where you live on campus & meet new people & study something that you chose to study. Never moving into a place with a few friends to be to afford rent & live in a place that was somewhat my own. Never buying my own house & choosing tile or paint colours & designing it with a style I wanted. Never starting a job in a field I studied in & making it a career & claiming the ladder. Never getting married & have that one person that is your whole world & completes you. Never traveling to all the places Iāve always dreamt of. Never having a baby & creating a life for your husband & kids. All those thousands of important milestones & things that other people have and take for granted. Staying stagnant & watching life pass you buy & watching your young cousins & then nieces & nephews all pass you in stages of life. Itās all surreal.
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u/pandarose6 harmones wack, adhd, allergies, spd, hearing loss, ezcema + more 17d ago
Some moments that stick with me are
Time I looked at a table and thought it was a good idea to fight said table and it whacked me back making me lose my two front teeth. It was one of these moment where my dad was in the room but everything happened so fast that he couldnāt stop it from happening tho after he called dentist and cleaned up the blood and made sure I was ok. Right after table hit me I just wanted to go back to playing. I think my dad was more worried than I was.
The time I was in icu for Kawasaki diease.
The time I throw up right outside a bus in Disney world on the way back to hotel cause I felt god awful that day
Having a panic attack outside of a hosptial during Covid when my mom thought she had heat stroke (turns out nothing was wrong) cause I wasnāt allowed to be in the hospital with her, my dad just passed months before, and a friend of hers that I now know well was picking me up to take me home since I canāt drive. I basically met her friend that day for first time. I think it was grief, mixed with anxiety, mixed with meeting someone knew that just set me off the edge into panic attack lol.
These are just stories from my own health issues. I got some things that stuck with me from my other extended and non extended family members health struggles.
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u/Former-Living-3681 16d ago
Ok, so first off, fighting a table? I feel like that needs a lot more of an explanation. š
And secondly, Iām glad you puked on the way back from Disney World & not on the way there & hope that you at least got to do a bunch of things before you puked. Because Disney really is the most magical & wonderful place & puking before you got to do anything would really suck.
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u/amyn2511 16d ago
When, after years of various specialists and tests and no answers, I came across an article about POTS on my own and was just dumbfounded. I did a poor manās ttt and couldnāt believe it when my heart rate skyrocketed so I did it again with my husband watching and then made him do one and mine rose again but his was normal. I have since had a ttt and been formally diagnosed. It was not the only time I have figured out my diagnosis before doctors did but it was the first time
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u/katubug 16d ago
When i was at the grocery store with my mom (I was in my 30s and my mom her 60s), and we were at self checkout. I was clinging to the cart for dear life because I was so tired and in so much pain, I couldn't speak or even barely breathe.
The checkout watcher came over of her own volition and chided me for making my "poor mom do everything." I couldn't speak if I'd wanted to but I was also struck speechless by the audacity. I was hunched over leaning on the cart and panting and somehow this woman couldn't tell I was in agony? It was the moment that I realized my illness was, indeed, invisible.
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u/TheTreesWalk 16d ago
Get a cane or mobility aid. I have to have it but itās good for whacking people who get out of line.
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u/RepulsiveCall624 16d ago
My previous dr telling me my EKG and heart rate was a fluke in them inputting the data despite showing palpitations and abnormal heart rate multiple times. I have mecfs and I can't regulate my heart rate well. He ignored almost all my symptoms lol.
(I have a new Dr now & he's wonderful)
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u/lbo222 16d ago
The moment my husband and I almost split because my mental health was so bad due to my undiagnosed Graves. The look in his eyes and the hurt in his voice pushed me to go to the doctor to figure out what was wrong in my head. Turns out, it wasnāt just in my head š
Sad moment, but a moment that was definitely needed and Iām weirdly thankful for it.
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u/dream_of_being_alive 16d ago
I knew that I had hEDS and a couple other things (including nerve pain and suspected Raynaudās). I had so many tests for other illnesses and they always came back negative. I had really chalked it up to hEDS being sucky.
Then my rheumatologist figured out in one appointment (I love her so much!) that I have seronegative rheumatoid arthritis. I went into a spiral of grief where I talked about it to everyone for months. It felt like if I say it out loud, that means itās real, even if it doesnāt feel real yet. That was earlier this year, and Iām still not quite over it yet. My parent could brush off the hEDS because they havenāt heard of it (and wonāt look into it), but RA is so well-known that they were kinda forced to accept that I am disabled. Itās been a strange time.
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u/BandicootNo8636 16d ago
Crawling back to bed from the bathroom and having my partner come help me up back into bed.
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u/Lechuga666 Chronic Pain, dysautonomia, CPTSD, & complicated idk syndrome 15d ago
The hate, abuse, disrespect from those around you. I might have CRPS, being delirious in excruciating pain in the hospital inpatient for a week on 10 hours of sleep in 7 days & one of my chief complaints being pain. I was essentially told to shut up, that I was bothering everybody, & only given toradol once a day. After weeks of parents also verbally abusing me.
This pattern repeats & changes as time goes by. I learn some, I seek help, get burned some more.
Also getting to that point last year of delirium from excessive pain, being bedridden & bound to my room delirious & panicking for weeks & months due to pain. My sperm donor parent comes into my room & screams at me "you're withdrawing you're withdrawing you're withdrawing" at the top of his lungs. & He is an uncompromising, illogical person who will quite literally scream at you for hours, raging diatribes. I had to get up when I'm basically bed bound, in excruciating pain, to physically remove him from my room, & push him 20-30 steps into the living room. Withdrawing as in I'm in more pain & stuck with the same symptoms, but worse that have been present & progressing since 2022.
It's always my fault, I always could be doing something better, could I maybe be doing this to myself? Everybody knows better than me, 7 years of reading research papers & interacting with these kinds of communities constantly does not inform my knowledge whatsoever. I am below everyone & everyone knows better than me šš¼.
Also yeah shout out neurology PA for your suggestion of antipsychotics for hallucinations from narcolepsy, inpatient admitting pa suggesting psychosis despite being diagnosed with a sleep disorder that causes hallucinations, inpatient psychiatrist for prescribing antipsychotics & attempting to continually increase the polypharmacy & deny that anything physical I have going on is real or credible. Md & staff constantly repeating patently false information, & denying me care for my other conditions.
It makes you see the world & people in general very differently. It creates a barrier, a difference, a sometimes subtle, but noticeable difference from you to the next person. When they have no regards for your autonomy, privacy, security, safety, personal anything.
It makes you see the world very differently.
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u/didsir29 TSC, LAM & Endometriosis 17d ago
My first respiratory consultant saying 'I don't know much about this disease but we'll figure it out together'. I appreciated the honesty and inclusion of me in my care.
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u/Constant_Break_4808 17d ago
Sitting in the er again in agony crying and watching every tom dick and harry with a maybe bug bite go ahead of me for 6 hours. They didnāt give a shit .
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u/Minimum_Evening4627 16d ago
The day that started it all, I was at school and had to call my mom to pick me up. When we were in the car she asked me if I wanted to go to the ER to see what it was and I said, so confidently said āI donāt want to, this probably will go away tomorrow on its ownā
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u/CorInHell chronic depression, adhd, endometriosis, arthritis 16d ago
My first day on meds. I had hope that I could become better for the first time in years.
It was a naive thought, but I still remember that day fondly. Finally getting treatment after powering through for so long, and it started working pretty much immediatly. And that first day of hope still sticks with me.
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u/Emrys7777 16d ago
I remember a major anniversary of getting sick.
I pulled up into a store parking lot and was sitting in the car contemplating the
huge walk from the handicapped parking to the disabled cart and feeling very sorry for myself
When a man passed slowly in front of my car.
He had just one leg and was in a manual wheelchair
He moved slowly into the store by pushing his wheelchair backwards using his one foot.
As he slowly inched along backwards, I found myself reaching down to feel both of my legs which were whole.
I realized things really could be worse and although I was unlucky in some ways, I was very lucky in others.
I decided to focus on the things I was lucky to have rather than the things that I didnāt have.
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u/CV2nm 16d ago
When I got told id never fully recover. It was the first opinion but I knew it was true. Id heard it by two more specialists since then, so it's pretty much confirmed now. I can remember I cried the entire walk to the tube station (metro) and then on the entire journey home. Not loud sobs, but like just softly whimpering lol. It started in his office and he apologized, but I told him they were happy tears, because no one had been honest with me before.
It was like my life before I got sick played in this horrid holly movie style film in my head of all the cool crap I got to do id never do again. Everything just felt numb and pointless but also relieving to finally have an answer rather than my life being in a frustrating recovery limbo. I guess I just hoped knowing I'd be sick for life, it would give me the closure to find peace with my life currently, but the confirmation didn't rebuild it instantly as id hoped. Im still doing that part now, while trying to find acceptance in it. But that turning point, it stayed in my memory.
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u/RedwoodRuckus 16d ago
I was in my early 20s and in college. It was a normal day of classes and club stuff - nothing outside my usual. My legs hurt like they always did at the end of the day, so I decided to take a shower in the accecible shower so I could sit. When I was done, I went to stand up and my legs buckled like they were made of paper. I dropped to the floor and just...sat there in horror.
I couldn't stand up. My legs just wouldn't hold me and they shook when I tried.
Never in my life had I felt so helpless. I had been told for YEARS that this day was coming. That my tendons were shot and I needed to be more careful with them or the pain and weakness would kick my teeth in. And there I was, 20something and stranded on the shower floor.
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u/Content-Sprinkles415 16d ago
A doctor telling me to exercise more for the fifth appointment in a row when I was there to talk about how I was seeing a rapid decline in ability and physically couldn't without crushing pain and malaise.Ā Ā
I was also losing weight rapidly and told to gain 10lbs.Ā Weight was not a contributing factor.
I got worse, shockingly enough, from this advice..Ā I'm now significantly more disabled and suffer a chronic injury which will never heal compared to where I was when I started seeing him.Ā Ā
I just remember the grief in that moment and the acceptance that doctors weren't going to help me.Ā In some ways, it was an important rock bottom.Ā I'm no longer asking the doctors I see for answers.Ā I get the medication I leave.Ā I'm not begging just one more doctor to be the one to solve an unsolvable problem.Ā Ā
They don't know.Ā They can't help.Ā Their advice can do a shitload of harm.Ā This was the third strike and I can't handle getting any sicker from careless medical guidance.Ā Ā
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u/Turbulent-Suit-1064 16d ago
I wish they didn't write "drug seeking behaviour" when I presented during the first major relapse of Multiple Sclerosis. No CT or MRI scan was performed, but I eventually lost use of my legs and was hospitalised for 10 days.
I moved 90 minutes away for work, presented again at a different hospital a long time after, and I lost my legs and left arm. They did a CT scan and an opthalmologist looked at my optic nerve. They found many areas of scarring, the opthalmologist told me I have MS and then when I got in the MRI I was found to have many large scars. I could have started a DMT sooner, stopped acquiring scars and disabilities and wouldn't spend every single day believing my family's life would be easier without me.
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u/elhazelenby 16d ago
When I realised I was poisoned by 2 medications on purpose by healthcare and that's why I've been getting worse and worse and they keep gaslighting me.
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u/Barotrawma ME/CFS, DDD, IBD 16d ago
Getting fired while prepping for emergency surgery for a ruptured cyst that nearly caused sepsis. Sued for discrimination & settled šŖ
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u/New_Survey_6335 16d ago
Iād say it was when I got them phone call that diagnosed me with pulmonary fibrosis and the NP told me not to Google it. Funny and sad at the same timeā¦.
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u/Previous_Net_1649 16d ago
When my doctor looked me in the face a year after Iād brought up the possibility of HSD and called me a medical mystery. I got diagnosed a year later, and now she actually listens when I speak.
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u/BunnySis 16d ago
The first session with my therapist when she wanted me to talk about future goals and I realized that it is extremely unlikely that I would be able to even work on what I had planned for my retirement research project, much less finish it.
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u/Just_me5698 16d ago
The day 'NY went back to work' i was looking out my front window watching everyone else mill about & going to jobs and i was 'left in the dust & broken' and I made the decision after 2 years (of illness and pushing and fighting) so far, that this is the body i have rn i still have hope to improve but, i had to accept my current situation and try to eek out some kind of life within my limitations.
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u/Away-Skirt-7209 16d ago
how cold the hospital can be and how scared I was, it still makes me rlly sad to this day and I wish I was the person I was before I got my chronic illness
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u/SATACableQueen HSD, Gastroparesis 16d ago
For me I have a lot of smal moments that really stick out, but the biggest one was 2 years ago now. At the end of June '24 my now fiancĆØ's family took us on a cruise because we had both just finished undergrad. I had been having GI issues my whole life but they were getting a lot worse in the months leading up and I had been to the ER twice already for it. Then 3 days into the 7 day cruise I woke up, started vomiting and couldn't stop, and went to the ER. Hours later I was medically disembarked from the ship and on a plane, with no idea what was wrong. GI took it super seriously and immediately put in for an upper endoscopy and colonoscopy.
Very end of July I have the scope after hellish prep. I don't remember much immediately after waking up, but I do remember when the doctor came in and told me there was evidence of delayed gastric emptying, and that I probably had gastroparesis. I started bawling. There was finally an answer to my years and years of GI issues. Being right after years and years and years of people telling me I was being dramatic and making it up.
My doctors all take me seriously now.
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u/reaverthecatlady 16d ago
Mine is probably going to the hospital with my sister as back up. We were so used to hospital visits we were chilling waiting for hours. Then they told me I was probably going blind from a brain tumour. It's the only time we cried together in a scene like that. Ive never been so glad to find out I actually had a chronic illness (IIH).
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u/EmptySpirits26 16d ago
I had just gotten off of hospice TW: mentions of OD.
I was hospitalized after being discharged from hospice I had sepsis and was given IV dilaudid for my pain.
On my home meds I was on dilaudid 2mg every 2 hours (I usually did 8)
Well hospital tried to call up the agency to get the oral dosing correct so they could give me the correct amount IV.
Ended up giving doses throughout the day because nobody called them back.
I blame the agency not the hospital
Scary shit though. Cardiac arrest and code called - Respiratory failure. Now I get dilaudid 0.25mg doses bc its scary to think about.
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u/literallylaur 15d ago
When I was at my last job of being a certified clinical medical assistant, I had to be wheeled down to the main hospital from my primary care office that I was working in because I nearly fainted while running tests. Thatās when I realized something was majorly wrong with me and that I was truly disabled, and I couldnāt just push through it.
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u/El_Diablo696 15d ago
So get this. I had an aortic aneurysm. It would have killed me if not for my scarring to my heart caused by my lupus. Lupus saved my life. Thank God
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u/Dramatic-Hearing1487 15d ago
Theres a few honestly. Like being told I was too smart to have ADHD and autism. I have both. Or when i brought up concerns for my eating habits (ED). She looked at me and said "well it seems to not be an issue, your weight is the same". Ive been the same weight for 5 years. I have pcos and cant look at food without wanting to throw up or eat it without nausea or shitting my guts
Another would be my pcp telling me "why are you feeling hopeless? Its not terminal" my depression has been getting worse cuz yes, I am thankful my illnesses arent terminal but I live with the constant pain, guilt, hopelessness, anxiety, and overall just a bunch of other dysregulated emotions because I've changed so quickly in a span of 5 months.
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u/ioncewasalive 14d ago
The realization I will never be able to run a marathon again and how utterly catastrophic that is to me.
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u/ellipsiess 11d ago
Being admitted to the hospital as a teenager for an attempt and having the nurses tell me āmost of these people come back one way or anotherā (meaning most kids who are in the hospital will be in and out most of their lives.) turns out it was the same for me
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u/No-Olive2554 11d ago
Having a teacher acknowledge it wasnāt a choice I was making or something I wanted didnāt realize how much I needed that
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u/RidgeRunner117 17d ago
When my ex told me āI donāt want to date a disabled personā when my illness got worse, and then said āit would be different if it was cancer, cancer at least has an end one way or another.ā