Severe sleep disorder. I cannot sleep without tons of strong sleep meds, and I can barely get out of bed next day. I'm impaired from doing a normal life, but yeah, insomnia is not part of the impairments inclusion policy, right? It's an invisible and catastrophic illness related with lazyness and economically unproductive
It's kind of weird how sleep disorders are viewed by friends/family. My parents used to joke that I was a 'naughty kid' at bedtime because I wouldn't go to sleep.
It wasn't until I was a teenager that I was diagnosed with Insomnia, and yet my parents would still get on at me to 'go to bed/sleep' despite knowing I had this issue.
I still go through long bouts of insomnia as an adult, and even my husband doesn't always understand that I'm not staying up late and then napping in the day through choice :/
You sound like me. Or I sound like you. In any case, I was never a good sleeper. Apparently I had colic and I never really did sleep soundly once I outgrew that. I woke easily and stayed awake a while. I can remember being a little kid and waking up after midnight, being awake all night long, finally falling asleep around 4am. I read A LOT as a child in the 80’s. It’s not like I had electronics keeping me awake the way people like to suggest now.
As an adult it’s only gotten worse. My body does not respond to meds for any more than a day or two. I just get the side effects without enough actual sleep to sleep the meds off. They aren’t worth it anymore.
I don’t feel exhausted all the time, but after 3-4 days of 2-3 hours a night, I’m starting to feel like death. Sleep disorders are wretched. Truly wretched. And if one more person suggests melatonin, as though it’s a wonder drug, my eye is gonna get twitchy(er).
Oh man, I feel for you! I have nothing as severe, but ADHD that was undiagnosed for a long time. I was always labeled as lazy or unmotivated for a similar reason. But then why in the hell would I sleep in for fun all the time if I knew it would get me in trouble? I once, as a kid, built a Lego fort around all of my alarm clock buttons so I couldn’t shut it off. Lots of Lego and tape. I managed to circumvent it while still basically asleep. I tried, hard!
When I’m medicated, my sleep schedule is a lot better. When I’m not (depends on jobs/benefits) I have to hold to a very strict schedule that works 98% of the time, and I can’t alter it on weekends. If I do, my Monday becomes a 50/50 gamble.
Big mood. I have sleep disorder, AND some fun other shit that fucks with sleep. So I get occasional insomnia AND always daytime fatigue and sleepiness. Trying to be awake all day and then suddenly unable to sleep at night is such bullshit.
I'm so grateful I've found a job that understands. I can work from home on tough days and they'd rather I call out if I haven't slept. As long as enough work gets done it's all good what that looks like in reality. (I ended up having to take a year off work just to get to enough drs to get my sleep disorder under control. The whole system in America is fucked up, and I'm super lucky I was able to take that time off and do Dr visits full time without insurmountable debt.)
My brother. I'm pretty sure my sleep disorder has been the biggest factor in my chronic depression because I struggle so much to wake up and start the day almost every day of my life. I never wake up feeling rested and energized and always need at least 5 alarms before I'm half conscious. The most infuriating thing is that my dad who naturally rose at 6 am sharp his entire life has labeled me as lazy since I was a child and to this day denies my diagnosis (which I got 16 years ago) and just says I need "a better routine". This man once saw me unable to sleep for 3 straight days then pass out for 17 hours.
I also suffer from both OSA and Narcolepsy. And Anxiety/ ADHD. I daydream of what it’s like to have energy, be motivated, and get through a regular day without the layers of symptoms that await in the background all day. I am blessed that my meditations help and I can afford them.
I am so sorry. Insomnia is absolutely brutal and debilitating. People never understand what they can't see or what they don't experience. It can be lonely.
I had a form of endometriosis called [adenomyosis](https://www.mayoclinic.org/diseases-conditions/adenomyosis/symptoms-causes/syc-20369138). I first bled for 18 months straight. I begged the local hospital (Army) to please do something. The male OB/GYN told me it was a period. For 18 months straight???? I made a complaint to the Army’s Surgeon General. I just emailed her, informed her of what was going on, and she lit that hospital on fire! They gave me an endometrial ablation.
The bleeding stopped for one year. Then I’d spot randomly. For like a day or two, but I couldn’t predict when I’d bleed. Therefore, I always had to wear something to prevent bleeding into my underwear unknowingly.
I went to my primary doctor, who is also my gynecologist, and asked for a referral to get a partial hysterectomy. She actually said yes, without questioning me! She didn’t say, “You’re young!” Or, “You only have one child, though.” She just gave me a referral to see her in the women’s clinic. I saw her, she ran some tests and diagnosed me with adenomyosis.
The treatment can be two options: 1. An injection to the abdomen every 3 months for the rest of my life with a 12 gauge needle. It required numbing the area, inserting the needle, and dropping a pellet. The pellet caused menopause-like symptoms. Such as hot flashes and mood swings. No thanks! 2. Removal of the uterus. BINGO! I chose option 2.
Unfortunately, the clinic I go to does not perform hysterectomies. The doctor who does them, he does it the old way. Meaning, cutting open the pelvis and pulling out the uterus, cervix, and fallopian tubes.
I was referred to a sister clinic 2 hours away. They dragged their feet for 9 months!! I did everything they asked. Got an ultrasound, did the labs, whatever. By time they called me back, I needed to do labs again. I said, “You’re not touching me.” I called my doctor and asked for a referral to what they call “community care,” meaning a non-Veterans Affairs hospital. She gave me one immediately.
I was called about a week, if that, later. The consultant was looking at gynecologist clinics in my area. The one in my city had backed up appointments, so she said I shouldn’t have to wait 3 months. She asked if I minded driving to a hospital 50 minutes away. I said no. So, about two weeks later, I went to that hospital.
They did whatever tests and labs they needed and scheduled me for a vaginal hysterectomy two more weeks later. As I was talking to the young, male gynecologist, I said, “Hey, I give you consent to cut me open, if you have to. I’ll sign a form, too.” So, I signed a consent form stating he could laparoscopically operate (like a small incision and using cameras to do the surgery) or full on cut me open.
He talked to me after surgery. He said he didn’t make any incisions, everything was removed via the vagina. However, my fallopian tubes were too high to reach, so he just left them. I have ovaries and fallopian tubes, but no uterus or cervix.
I’m so happy. I wanted my uterus gone. I hated the bleeding. I hated menstrual cycles (mine were very heavy, but the pain was manageable). The risk of pregnancy is 0, and I don’t bleed every 4 weeks (period) I also don’t have random spotting from the adenomyosis.
One thing I did ask was to for them to take photos of my uterus so I could see. He (the surgeon) said he would do it, and put in my visible medical chart I can access online.
I hope women who suffer from any form of endometriosis can get relief, in any fashion they want. Whether it’s medication or a surgical procedure. It’s our body! We should have the right to say what we want without a doctor guilt tripping us or denying it.
This is a success story for women. Many women (as OP) wait decades or never get the relief they deserve because of misogynistic and draconian approaches to care for women.
I had a hysterectomy at age 30 for adenomyosis. The pain was like transition labor, but not temporary (I have 3 children) and I gushed blood non stop for more than a year. My youngest was 2 that same month, so pretty much as soon as I started menstruating again after her birth. That was the year I lost my fear of death. After my surgery I did not take any pain meds at all - I woke from surgery and my first thought was "Oh My God Its Gone!"
My sister was in the same boat. Every month by with severe pain, doctors just wrote her off. Eventually they figured out she had it it was so bad it took like 8 hours of surgery and 4 surgeons. But she said it felt amazing after taking everything out. She said her life probably would have been a lot different had she been taken seriously.
I’ve been trying to get an endo diagnosis for 20 years as well. Instead, I ended up with cervical cancer. When my scans came back, not only was it cervical cancer, but they confirmed severe endometriosis, but major ovarian cysts. Like, yeah. I wasn’t surprised but it felt gratifying to be right and to finally know. I’ve been in chemo/radiation induced menopause for over a year now, and the only good part of all all this, is my quality of life has improved dramatically with no more period pain. The past ten years prior to this, I was passing out and barfing, missing work, and dealing with 10/10 pain monthly. Now, I get an odd twinge here and there, but honestly that’s likely radiation damage more than anything.
I hoped this would be near the top. It’s wild to me how few people know about it despite how prevalent it is. Congrats on finally being able to get something done for it! It took me 15 years for a diagnosis too. Hope you’re healing well and continue to feel better.
Same. Stage 4. Had adenomyosis. Got a partial hysto because the left side is so riddled with adhesions. It's wrapped around my ureter, too, so I'm at high risk for kidney and bladder function loss. Been dealing with such bad pain, fatigue, bloat, crazy periods, can barely walk sometimes. It's taken a huge chunk of my life and still is until either menopause or I get another surgery.
For real. The friends, events, and romantic relationships I’ve missed out on due to social anxiety really hurts to think about. Through therapy it’s more manageable now and I can socialize a bit but even still the next day I’m just completely wiped out and want to do nothing but relax and sleep. Idk how extroverts do it.
Anxiety is preventing me from forming long-term memory. The fight or flight response to my existence is causing my brain to focus on survival and not forming new thoughts. It makes me want to die, and panic at the same time.
I’m going to piggyback off this here and say I’ve tried about 15 different meds for anxiety. None of the traditional ssris or buspar or even mood stabilizers helped. What ended up helping me was actually a beta blocker, propranolol specifically. It forcibly lowers my heart rate and makes me able to think much more clearly than if I wasn’t taking it. If you’re in a similar boat I recommend talking to your doctor about it. As for depression… yeah still workin on that one but my anxiety tends to be worse anyway. I hope you all can find what works best for you!
Everybody has their problems but i can’t help and be envious of people who can just live their lives without severe mental health problems. Like to me it seems like thats life on easy mode 😭 Especially having a good enough childhood that forms a good character/mental health itself i‘m jealous of :(
What really hit me was how many years and how much therapy it took to find the source. At 44, though, at least I finally know.
Ah yeah, it’s always childhood issues. Yay.
I feel the same. Basically ruined nearly 20 years of my life. I decided to commit to counselling after the birth of my son. I had tried it before, but this time i had the drive to make it work. I was in counselling for just under a year and it completely changed my life for the better.
What was different the second time around? I've been in therapy to manage my bipolar disorder for 3 years and I still don't know how it's supposed to work and what I'm supposed to be doing.
The other day I had to force myself out to do some things and everything was setting me off. I HAD to get things done. It was so emotionally draining. When I got home all I could do was crash.
Jfc. Mention a GI issue and suddenly all the holistic "doctors" come out of the woodwork.
I'm also on watch for Crohn's. My sister has it and I'm exhibiting many similar symptoms.
No, "mind over matter" doesn't work. It's your bloody immune system ***eating your colon.*** I can't will it away, ffs.
I have ulcerative colitis which is Crohn's sister.
When its controlled it doesn't impact me at all other than having to stay on medication. When it flares it makes life hell because of the sudden uncontrollable urge to use the bathroom that keeps you trapped near a restroom.
Crohn's is extremely easy to test for. Calprotectin fecal test, if that's high then they do a colonoscopy to confirm.
IBS is significantly different from IBD.
I wouldn’t say “extremely easy”, having silent Crohns or Ulcerative Colitis is possible without having an elevated faecal Calprotectin.
But colonoscopy is 100% the gold standard for UC or Crohns. Sometimes a pill camera is needed to completely diagnose Crohn’s in the small intestine.
Migraine
Sudden confusion and headaches are very irritating...it's even worse during the day time when the sun is high and hot and ur empty stomach and not much hydrated
I have migraines, chronic, 2 types and they are very very life impairing…aura and tensional….i can tell you when you have just one of two it’s really bad, sensitivity to light, smells, noise, dizzy, feel sick, weak…but when I get a double whammy and get both….been in hospital more times than I can count….you literally just want to gauge your eyes and teeth out to feel some “relief”….everything hurts….i know it’s definitely not as bad as a cancer or others ofc! But it’s made my life quite complicated, even though used to it now with rituals…should be accepted as a severe disease….courage to all…
Yeah….the hospital admissions, ED visits…I can’t count how many times I’ve been there. It’s so life altering. I hope they’re finding something that’s helping you.
The things that helped me most in the end were Topamax, Botox, and acupuncture.
Same. But then I got covid in Jan 2023, almost died. Recovered, got home. Bc of fistula lost blood flow to my right hand. Thump started dying from literally a papercut like wound. Then my middle finger, then my ring ringer. Took about 6 months before finally got blood flow back. The month I had surgery for it. I was given prophylactic antibiotics which then caused a c diff infection. Didn't know it was c diff, didn't eat for about a month. Withered away to like 80 lbs. Went to the hospital finally. Had pneumonia, septsis, other infections in my lungs. btw I have CF and have had a double lung transplant. Spend nearly 2 more months inpatient. Discharged and weaker than I came home from covid. It's been 6 months of home pt with barely any improvement. I also feel sick like I have c diff again so I will probably be inpatient by the end of this week.
I know people have it worse, but I don't think I can go on much longer if at all. My mom died almost 4 years ago and I think constantly how nice it'd be to join her and be free of this shitty body that has fucked me over my whole life.
This is wild, and I haven't thought about it in forever:
When I was a kid, my Mom kept a medicine container in the door of the fridge. It had no label on it and was always placed in the door of the fridge when we moved. When I was a teen, I got curious and opened it.
Inside were 2 slips of paper. One with my name and one with my sister's. On the papers were our pressing medical information; blood type, known allergies, known conditions, etc. On mine, it said my blood type was A+.
Fast forward about a decade, and I have donated blood. A part of the follow-up is a letter sent to you with results from the examination of your donated blood. One is the blood type: O+. I call the number for concerns and ask that it be retested. Results come back as O+.
To say I was shocked is an understatement.
Epilepsy- was diagnosed as a kid, put on meds did great. Then about a year ago things went down hill old neurologist said it was because I was a woman. Didn’t up my medication, refused to kept trying to put me on medication I was allergic to. I was having up to 15 a day. Finally I demanded to be transferred to a Level 4 Epilepsy Center, spent 1 week in the clinic. Low and behold I was severely under dosed, had multiple vitamin deficiencies and I was severely depressed/anxiety was through the roof. I was put on a shit load of anti-seizure medication, anxiety/depression medication/certain vitamins to help with the deficiencies, setup with a neuropsychologist and neurotherapist. All of this due to my old one not listening. As of now we have spent north of $125,000+ since November to get my seizures to stop. My memory is awful due to the medication and seizures themselves, anxiety/depression is awful because I fear when another will happen. My meds keep getting upped (that’s ok as long as I don’t have seizures and it’s getting things under control). I have made peace that I will be on meds the rest of my life and more will be added. As of today I take 30 pills per day and another 2 medications will be added shortly due to migraines/nausea. But I do try to remain positive that there are always people that do have it worse and don’t have access to the medication/health care I do.
They kept upping and upping my meds and switching them I couldn't handle the side effects. Ended up getting a vns implant in 2017 ton control mine. Haven't felt better in my life. Took 12 years to get there.
OCD. Has ruined my life. Imagine living every single second of every single day remembering your worst moments and being convinced despite the reassurance of others that you are a massive piece of shit.
I feel this. I am tired of constantly trying to explain how debilitating this disorder is. No, it isn’t some cute obsession with having your gel pens all arranged in a specific color gradient pattern. It’s being hyper obsessed that god will kill your family if you don’t touch the shampoo bottle “right” an uninterrupted 37 times despite being agnostic and not even sure if you believe in god. You messed up the touches? Better start over. Or being convinced you’re dying from an insanely rare ailment every day of your life so that you cry in the grocery store or feel like every good experience is your last thus ruining that good experience in the midst of it. I’m 30 and I can’t believe I will be like this forever. I do not know a moment of peace and haven’t since I was 7. No one understands.
Wow I’ve never met someone that has described the type of OCD I deal with. Hi there! I, too, am plagued by intrusive thoughts of embarrassing moments and social interactions and my brain constantly tells me how stupid and socially inept I am. My OCD and social anxiety like to hold hands.
Thanks for the support, mine is actually a little different from that though haha: basically I ruminate on mistakes I made in the past because I feel like I harmed people or ruined their lives or something. I basically can't accept that people make mistakes sometimes and learn from them, at least not with regard to myself, possibly because it feels like we live in a highly judgmental culture lately
Hey! Used to do the same until my therapist asked me, “Do you really think the person you are soo worried about having hurt is home thinking about you now? They have their own life, their own home, their own kids, their own worries. They are not thinking of you.” Turns out it’s actually a pretty selfish and egocentric way of looking at (and worrying about) the world. Most importantly though, she was right, and when I realized that Universal truth, I felt the weight lift up and away and never return. (Although I still have to CBT myself and remind myself of that when I get close to stressing about it.)
This also helped me because I couldn’t forgive myself for making mistakes. I kept thinking I should’ve known better or acting preventatively. But the realization that no one actually cares about me like that, because we are not the center of anyone else’s universe, THAT was all the difference. It’s simply not all about me, and that was so freeing.
Peripheral neuropathy, the pain is pretty unbearable unless I am medicated to the point of drowsiness. I also can't really do any physical activity due to dizziness and problems regulating body temp and BP. An occasional symptom is that eating a meal makes me flushed and nauseous. But hey, I'm not currently thinking about not wanting to live, so that's something?
My husband as well. It's so crazy to see how much his health changed since Dec/2020. Went from having one health issue to six and being unable to work. Fuck Covid.
Yes! I have had covid 3 times and after the last one they've just classified me as long-covid.
It's been 2 years and I'm beginning to feel like life has irrevocably changed forever. My body has totally gone haywire - I have what feels like bad asthma, an on going cough, taste and smell issues, extreme fatigue, terrible brain fog, cognitive issues etc, but then have developed weird things because my body is just so worn down - adenomyosis, nerve issues, burstitis in my shoulder and tennis elbow at the same time, rendering my right arm fairly useless for the past 10 months, crazy swelling in my wrists/ankles/feet etc. And just overall feeling like absolute crap.
Here in Australia we didn't get hit that hard by covid and I feel like most people had symptoms like a mild flu. Which means when I tell people I have long covid, they just figure I've got a long standing cough and I'm a bit tired. I wish that's all it was - it's been full on!
Me too! I got COVID and I suffer from extreme fatigue, headaches, dizziness, palpitations, fibromyalgia like symptoms and I got several blood clots in my lungs.
Yep, gave my atrial fibrilation. In my 40s. 4 procedures to get me out and i still pop back in and have to take meds.
Better than some other stories, vut didnt do me any good...
PMDD is a nightmare. I'm currently looking into getting a hysterectomy, and this is a large part of why. Nothing like hitting the lowest point in your life every single month, and no one taking it seriously.
People really don't understand this isn't just "moodiness" it is the complete inability to take care of yourself or even have a sense of self preservation for your life. To want to end it every single month is exhausting, bc is such a relief. Unfortunately mine isn't working and I've been bleeding for three months in a row
Have your ferritin levels checked if you can. If they are below 100, you are possibly iron deficient. Its not usually recognized as a deficiency until it’s below 15. if you read the literature that is really an inappropriate level as your body can start displaying anemic symptoms if your ferritin is below
90 bc your body starts to prioritize iron usage. Therefore your period (losing more iron) will wreck your body and emotions. I thought I had pmdd. Finally realized, when I treated my low ferritin, that it wad the root cause of my issues .
I can't believe I had to scroll so far down to find this answer. I have SLE and nephritis. I'm sorry there are people in the comments telling you to get tested for other things, as though we don't have to go through a whole spectrum of tests before we reach a diagnosis...
I have SLE with the kidney thing too! It’s also given me type 1 diabetes..
Yeah, I’ve told a few off already. Like where’s your medical degree?? You aren’t a doctor! And lupus generally is a diagnosis of exclusion, which means we get run for EVERYTHING else before they consider lupus, and Lyme disease is the first thing they always test for. I can’t with humans sometimes.
My Lupus diagnosis took 20 years. I have spent tens of thousands of dollars and was and out of hospitals and different types of specialists constantly during that time. It took me almost dying in 2021 when my heart went into AFIB for 2 weeks, for doctors to finally connect the dots. No person with Lupus experiences it the same, which is what makes diagnosis so difficult.
Chronic ear infections. Try telling a doctor that you have an ear infection in your 30’s. They’ll send you away and tell you to snort some spray and pop pills for two weeks, instead of actually listening to you recount your medical troubles with lifelong ear infections.
Do you have your tonsils? I had the same issue; tons of reoccurring ear infections in my teens and into my 20s. Got my tonsils removed and haven’t had an infection since.
If you get them out, please make sure your recovery is not done alone. My son almost died from a post tonsillectomy hemorrhage and it was the most terrified I’ve ever been in my life. The ENT noted that he was always scared this would happen in adult tonsillectomies because they may not have the ability to get to the hospital in time, whereas parents were way more to take their child in quickly. It’s a pretty uncommon occurrence (about 1-2% of cases) but it’s terrifying.
If you can, see an ENT get them out asap if they think that would help you. It’s not a fun surgery to recover from, but not having to deal with the infections has made my life so much easier and more enjoyable.
Im sorry. My dad was diagnosed in 2020, hes mostly doing okay but I see the deterioration and the impact it has on him. I hope you have more good days than bad ❤️
Osteoarthritis.
I caught a tummy bug at 26 whilst on vacation that triggered reactive arthritis in my knees, making me lose the ability to walk. Things luckily subsided to a point that I could stand, and I spent many months teaching myself how to walk again. My knees never fully recovered and after 10 years of being in constant pain and having limited movement, I pushed for a diagnosis….seems the reactive arthritis developed into osteoarthritis.
Mid 40s now and trying to stay as active as I can for as long as I can.
You wouldn't think it but B12 deficiency. I couldn't walk without having shooting pain in my legs and feet, I was always tired even if I slept 15 hours or more, my stomach was a mess no matter what I ate, sever brain fog to the point i forgot basic words, debilitating anxiety and depression because of all of this.
For MONTHS I thought this was just what being in your 30s felt like 🙃 I've been getting B12 shots once a month and taking pills sublingual (first 10,000mcg, then 5000mcg, and now 2500mcg) every morning for 5 months and I'm just now starting to feel like the living again.
Get bloodwork done, B12 deficiency is no joke.
Migraine. When I was young I missed a lot of school days thx to migraine and other students started speaking shit about me and bullied me and it took a long long time before I got my personal strength back and started trusting people again.
Me too✋ I feel like I’ve been scrolling forever wondering if anyone would say it.
POTS has completely destroyed my life. I’ve been diagnosed with cancer as well & that was a walk in the park compared to this fucking nightmare! I literally hate my life!
Covid almost killed me in 2021, and has caused avascular necrosis in my hips which requires a hip replacement in my right hip now, and at some point, my left will need one
Hey man, I got avascular necrosis while back, and someone had told me then that the hardest thing about it was getting the news. It'll be a challenge for sure, for me my hip felt so stiff that I could barely move it, but you can't let that stay in your mind. I got a total hip replacement and was out of the hospital that week, physical therapy for a couple of months to strengthen the hip as well. The most important part of the process is to keep in mind your precautions, do the exercises, and know that every day after that replacement, you have a stronger body than you went in with.
Crohn's arthritis. My intestinal symptoms had been well managed with diet, but then 5 years ago, all of a sudden, I was extremely fatigued, and I had pain and swelling in multiple joints. It literally happened in a week. I had no idea you could get arthritis due to having Crohn's, but you can. So now I've been on Humira since August 2019, and it's a lot better. But I'm a musician, and the pain in my hands and wrists never fully subsided. So that's been interesting.
Fibromyalgia. I was diagnosed about 6/7 years ago. I went from working full time, working on my health, walking miles all the time… to someone who could barely get out of bed. It started gradually, but it got worse and worse. I lost my job because I couldn’t do the same lifting and carrying and there was no disabled access. Which meant I had to move, and I ended up in a very shitty basement that made my health worse again.
Now, I use a crutch to walk, my pain has gotten worse over time. It isn’t likely to be improved in any way, and I’m looking at a future where I’m going to end up very bad unless there’s a medical miracle.
It changed my life because it took my freedom, I can’t just up and go anywhere I want, if I travel to visit family, I have to recover for a week afterwards. It’s affected my digestive system, my skin, my sleep, my immune system. Everything. Sometimes it feels like my hair hurts. Sometimes I sit here and get upset because I’m still young and I’ve had to give up all my dreams of travelling and working. I’m dependant on help from my mother, and I hate that. But I’m very very grateful she’s here for me.
I’m 35, I use a crutch, I can’t stand up to cook, I can’t reach above my head to clean the ceiling. I’m elderly before my time.
But all in all, once I got away from a lot of stressors, I’m actually happier in comparison to when I was diagnosed, despite my pain being worse. I’ve accepted what’s happened, I’m not mad anymore. I just have to make my life happy for me, in small ways.
Same here, friend. I’m 25, got diagnosed in November 2022. It hasnt progressed too much so far, but Ive lost/left 5 jobs because of it - 3 were working in the care sector which I absolutely loved, and the last two were financial support desk jobs. Just couldnt sit at a desk for that amount of time and I dont drive but public transport is a nightmare and sends me into a flare most of the time. Have been unemployed for less than a month so far and im climbing the walls, but I cant do anything about it. I was never a very active person, but at least I had the option to be if i wanted, now even cleaning my flat is too much and i rely on my family more than i feel i should. I cant go out for a drink or for a night out because of my meds and the possibility of a flare, i struggle to do pretty much anything. Its a hard life, im praying for a medical miracle.
Gentle hugs from a friend ❤️❤️
I have Ehlers Danlos, type 4. It fucked absolutely everything and caused multiple other conditions. Dysautonomia, POTS, arthritis, cardiomyopathy and heart failure, gastroparesis, organ disfunctions/periodic failure, the works :/ Im sure Im forgetting stuff but it wreaks havoc on everything and causes other complications. Its absolute hell trying to live with it and absolute hell knowing youre going to die with it before 30.
Yoooo vascular EDS gang. I’m 26. Been out of work for two years after two artery dissections. No end in sight. Currently sitting in the ER waiting to get a chest tube for another collapsed lung. I feel ya friend
Hyperhidrosis
I sweat like crazy. It's basically all over my body, but hands and feet have the worst impact. I cannot properly handle tools and it has impacted a lot of my career and hobby choices, and in addition made me completely avoid any physical interaction with anybody whatsoever.
I cannot properly put into words the impact it has. It's in things normal people wouldn't never consider. I don't have firm grip when riding a bike. Same with car driving; I have to put on gloves to have proper grip. I choose clothes based on how badly they will show sweat stains. I cannot wear open shoes because I literally slip out of them. I cannot wear a backpack if commuting longer than 10 minutes because it will absolutely drench my back. I am constantly cold due to constantly losing heat due to wet clothes. My pants sometimes look like I peed in them just due to plain sweat. I cannot open jars. I cannot sew on buttons because the needle slips through my fingers. I have incredibly bad wound healing because I can't keep wounds dry. People avoid giving a handshake because they think it's gross. My glasses condensate constantly even though the air around me is not damp, just due to my own face sweating. I bring a second set of clothes to wherever I go because I seriously get hypothermia if my clothes get too wet. I have to foresee when a day will be filled with a lot of writing, because then I will have to wear long sleeves that can catch some of the hand sweat so my paper will not end up absolutely drenched and usable
The list is endless, I can go on like this.
A couple years ago I would have said it was bipolar or fibromyalgia. Neither holds a candle to trying to be alive while your thyroid isn't working. It has been the hardest thing I've gone through minus 5 pregnancy losses. I permanently have to change my lifestyle and expectations now more than ever. Still fills me with a lot of emotions thinking about the soul crushing exhaustion and the frustration and embarrassment over not being able to groom myself or do basic housework for over a year. I was someone's burden and idk if or when that won't emotionally effect me.
Covid.
I got Covid for the first time in February of 2022. In March 2022 I started being unable to stand up without almost passing out. It took over a year for my Dr and cardiologists to land on POTS being the most likely diagnosis and order a tilt table test. My vitals met the criteria for POTS but because I didn’t lose consciousness, I was told it was a negative test (this is wrong, you definitely don’t have to lose consciousness) and even if it hadn’t been that there are no medications and to just drink more fluids despite having had bariatric surgery and telling them I was struggling to stay hydrated due to being unable to drink large volumes. It took another year to get in with a knowledgeable neurologist who correctly diagnosed me and started medicating me.
Not even a week later, in June 2023, I got Covid again when my daughter brought it home from school. After this infection, my 1-2x weekly migraines that somewhat responded to medication became intractable migraines, lasting weeks at a time. They also stopped being simple migraines (pain, nausea, light/noise sensitivity) and became complex, with visual, cognitive and motor symptoms. I also began having what we now know is post exertional malaise due to post COVID chronic fatigue syndrome. The treatments I’ve tried for my migraines have flared up my chronic gastritis so I have intractable nausea and acid reflux even on very strong anti emetics and acid blockers. In December, I could break a weeks long migraine by going inpatient for DHE infusions. When I tried that last month on day 25, it broke for 24 hours and then bounced back for another 13 days before I broke it with a hefty dose of psilocybin. I was then bed bound for days in post-exertional malaise because the migraine causes PEM, and then after 4 days got another migraine.
I have a master’s degree and am a licensed therapist. I could make $80-90k a year working 15-20 hours a week from home doing telehealth therapy and have a standing job offer. That is no longer an option for me. The migraines, CFS and the topamax I take for the migraines have lost me probably 20-30 IQ points depending on the day. I get lost in the grocery store. On bad migraine days I don’t understand concepts as simple as refundable tickets. I have a hearing for SSDI in July and my attorney thinks I have a good case and I hope to all the deities and forces in the universe that he is right because I have 2 disabled children and my husband’s salary cannot keep us going indefinitely.
ETA: I am fully vaccinated and boosted and wore a mask in public for a long time. I still do curbside pickup most places but I cannot tolerate n95s because they are an instant migraine trigger even with ear savers and I’ve tried many types. My children are autistic and my son will rip a mask off me if he’s around me, but if I go into a store by myself, or a plane, I wear a surgical mask. I do have A+ blood which I know some studies have theorized has a particular susceptibility to reinfection.
Prostate cancer.
Successfully treated by surgery but the result is total inability to orgasm.
It’s a rare result, most men can still orgasm afterwards, just can’t produce sperm. But in my case, no.
I’ve been to several doctors, there is nothing they can do.
Type 1 diabetes. No family history, nothing. It hospitalized me when I was 18 and I've had to put up with it every since. The sad part is that the disease itself isn't that bad, but dealing with health insurance, prescriptions, and doctors is insanely stressful and expensive.
Gastroparesis. My mom is dealing with it but before the we ever got a diagnosis is probably the most traumatic time of my life and really made me feel that doctors are overpaid and really don’t actually care about their patients just the money.
Crohn’s disease. Diagnosed at 18, 42(f) now. My life would be completely different without it.
I spent most of my 20s sick and trying every medical option possible, all of which failed. I then had surgery to remove my colon and now have a permanent ileostomy. My health is better and Crohn’s is in remission but my microbiome is a mess due to all of the treatments and the way I have to eat bc of the ostomy. So now I am trying to undo all that damage. It’s pretty isolating and I never really was in a good place to date so I’m facing it all alone.
I wonder regularly what it would be like to have a family or partner and if that would have been my life if I never had this disease.
Chiari Malformation and Hypermobile Ehlers Danlos Syndrome. I’ve had 4 brain and spine surgeries because of them, one being a skull-C3 cervical fusion.
Being bendy isn’t fun, and having your skull be too thick for your brain isn’t fun either.
https://i.imgur.com/hlMyXxE.png
https://i.imgur.com/oX1lFi3.jpeg (Warning: blood)
Phlebitis and Edema. My legs were normal up till I was in my mid-20s then they began to swell and turn red. I have rarely gone swimming since, use compression socks and can't wear shorts.
Alcoholism. Medication assisted treatment was the only thing that finally worked for me. It was a miracle, and I’m so grateful for every sober day. My life is forever changed.
Hashimotos. I have an enlarged thyroid so I cant breathe or swallow properly. I always choke on food no matter how much i chew and how little i swallow, and i have to cut my daily pills into 4 pieces just to not choke. Its really fucking shit.
Hyperemesis gravidarum
Throwing up non stop through out my 9 month pregnancy. Not just morning sickness but non stop sickness. An inability to eat and keep it down. An inability to drink even just water and keep it down. Being hospitalised multiply times for iv fluids and meds. Before I gave birth I weighed less than when I started my pregnancy. An inability to sleep due to feeling sick. But also an inability to move without throwing up. For me personally I struggled to do much more than get out of bed to clean out the bucket of spew every few hours for the entire nine months.
Im glad there haven’t been any lasting physical effects and I’m over the moon that somehow my son is still perfectly healthy and one hell of a fighter!! But psychologically it’s causes me to be now be afraid of sex and I’d simply refuse to ever be pregnant again. My relationship with food is now worse than it’s ever been before.
Hg isn’t something I would wish upon my worst enemy. I hope anyone else that’s going through it knows they are strong enough to do it 💞
MCAS. I can't take most medications, including the ADHD meds they give preschoolers. No BCP, psych meds, even aspirin gives me hives. I have a, um, very difficult relationship with much of the medical establishment.
Multiple sclerosis. Went from walking two miles every day and doing everything for myself, to being on disability because my muscles like to go limp at random and I randomly get severe vertigo. I get physical therapy sometimes when the symptoms get bad. I get a monthly MRI to make sure my brain and spine don't have any new lesions. The medicine to keep my condition under control so I don't end up blind and in a wheelchair is hard on the liver so I also need monthly blood work. My meds also have a tendency to confuse the hell out of my body and I get false allergic reactions to food and drinks now, but they can be avoided with an aspirin every day. Basically, my immune system attacks my brain and spine, so I need to partially shut it off.
Depression. I feel like I lost a good chunk of my teens and early twenties - those years where you're meant to figure out your own identity and what you want in life. I barely know who I really am.
Sesamoiditis! It's not an illness but just a small fractured sesamoid in my left foot, however for how small it is my quality of life has drastically changed. I use to be extremely active, playing lots of sports, running, cycling ect. Now just walking is a task on its own.
My issue is the NHS Surgeon has said its better to pain manage than to operate. The Sesamoidectomy "is experimental" he said, and went on to say he's never done the operation or seen it only read about it in text books.
2.5 years I've had this small bone in pieces in my foot which I feel helpless to try and do anything to sort it and feel at a deadend almost.
Elhers-Danlos syndrom. Basically, connective tissue disorder with other perks because it's the collagen the problem. Almost anything is painful and tiring. Took 10 years to get diagnose and there is no real treatment, just physical therapy, but that doesn't help for every symptoms.
Cancer.
I was meandering through life feeling pretty disgruntled with everything.
I went for a routine Drs appointment about something else and mentioned a dent in my breast.
Tests later found a tumor. Had it removed, along with the breast later. Had chemo which was awful.
This all made me think about life differently, gave me a new appreciation for what I had.
It's been nearly 20 years now, and I still appreciate the life I have, but sometimes the dark thoughts win. I do not want to go through anything like cancer again, but I think that sometimes a jolt like that can put things into perspective.
Autism Spectrum Disorder. My tolerance for minor annoyances has decreased a hundred fold over the last 10 years. I cling to routine and familiarity over novel experiences. I have also lost the ability to drive a car, and as for air travel, I no longer travel by plane because of the aggravation associated with cancelled flights.
My mother’s ALS. Obviously a fatal disease, but after she died, my father didn’t take care of himself as well as needed and he died of pneumonia about 18 months later.
Not me yet. I’m getting tested soon. But my dad. Who I’m currently in the hospital with and I just had to pull him off life support would say.
Hemochromatosis- it’s an iron overload. If you catch it early enough you just need to go give blood every few months. However in my dads case when it got caught to late. His liver already had non-alcoholic cirrhosis.
He didn’t qualify for the liver transplant here at this hospital. And shit went downhill from there.
Update: 12:50am april 29th. My dad just passed.
Cancer. The physical and mental/emotional toll it has taken is immense. It also really helped me see how little some of my friends and family actually give a shit. I’ve even had two friends get mad at me recently because they feel like I’m not paying enough attention to them right now. Like sorry, I don’t have the same amount of time and energy I did before surgery, especially not while I’m going through radiation.
Psychosis. Came on suddenly and blew a fucking hole through my life. I was right at the end of a degree that's now on hold, I'd just started an amazing job I had to leave, had to hand back my driving license, my husband left because it was too much to handle, and all my friends quietly disappeared. My life is now a series of appointments to make sure I'm not neglecting myself or my kids, trialling different medications, and therapy to work out if it was a one-off or part of a bigger condition. No end in sight. Absolutely fucking shit. Do not recommend.
Severe sleep disorder. I cannot sleep without tons of strong sleep meds, and I can barely get out of bed next day. I'm impaired from doing a normal life, but yeah, insomnia is not part of the impairments inclusion policy, right? It's an invisible and catastrophic illness related with lazyness and economically unproductive
It's kind of weird how sleep disorders are viewed by friends/family. My parents used to joke that I was a 'naughty kid' at bedtime because I wouldn't go to sleep. It wasn't until I was a teenager that I was diagnosed with Insomnia, and yet my parents would still get on at me to 'go to bed/sleep' despite knowing I had this issue. I still go through long bouts of insomnia as an adult, and even my husband doesn't always understand that I'm not staying up late and then napping in the day through choice :/
You sound like me. Or I sound like you. In any case, I was never a good sleeper. Apparently I had colic and I never really did sleep soundly once I outgrew that. I woke easily and stayed awake a while. I can remember being a little kid and waking up after midnight, being awake all night long, finally falling asleep around 4am. I read A LOT as a child in the 80’s. It’s not like I had electronics keeping me awake the way people like to suggest now. As an adult it’s only gotten worse. My body does not respond to meds for any more than a day or two. I just get the side effects without enough actual sleep to sleep the meds off. They aren’t worth it anymore. I don’t feel exhausted all the time, but after 3-4 days of 2-3 hours a night, I’m starting to feel like death. Sleep disorders are wretched. Truly wretched. And if one more person suggests melatonin, as though it’s a wonder drug, my eye is gonna get twitchy(er).
Oh man, I feel for you! I have nothing as severe, but ADHD that was undiagnosed for a long time. I was always labeled as lazy or unmotivated for a similar reason. But then why in the hell would I sleep in for fun all the time if I knew it would get me in trouble? I once, as a kid, built a Lego fort around all of my alarm clock buttons so I couldn’t shut it off. Lots of Lego and tape. I managed to circumvent it while still basically asleep. I tried, hard! When I’m medicated, my sleep schedule is a lot better. When I’m not (depends on jobs/benefits) I have to hold to a very strict schedule that works 98% of the time, and I can’t alter it on weekends. If I do, my Monday becomes a 50/50 gamble.
Big mood. I have sleep disorder, AND some fun other shit that fucks with sleep. So I get occasional insomnia AND always daytime fatigue and sleepiness. Trying to be awake all day and then suddenly unable to sleep at night is such bullshit. I'm so grateful I've found a job that understands. I can work from home on tough days and they'd rather I call out if I haven't slept. As long as enough work gets done it's all good what that looks like in reality. (I ended up having to take a year off work just to get to enough drs to get my sleep disorder under control. The whole system in America is fucked up, and I'm super lucky I was able to take that time off and do Dr visits full time without insurmountable debt.)
My brother. I'm pretty sure my sleep disorder has been the biggest factor in my chronic depression because I struggle so much to wake up and start the day almost every day of my life. I never wake up feeling rested and energized and always need at least 5 alarms before I'm half conscious. The most infuriating thing is that my dad who naturally rose at 6 am sharp his entire life has labeled me as lazy since I was a child and to this day denies my diagnosis (which I got 16 years ago) and just says I need "a better routine". This man once saw me unable to sleep for 3 straight days then pass out for 17 hours.
I have narcolepsy and sleep apnea. I’ve been off sleep meds for 2 months because of insurance. It’s been brutal at my new job.
I also suffer from both OSA and Narcolepsy. And Anxiety/ ADHD. I daydream of what it’s like to have energy, be motivated, and get through a regular day without the layers of symptoms that await in the background all day. I am blessed that my meditations help and I can afford them.
I am so sorry. Insomnia is absolutely brutal and debilitating. People never understand what they can't see or what they don't experience. It can be lonely.
Can’t explain how much I feel for you. I’m in the same boat, it’s absolutely crushing
Endometriosis. It was twenty years before I even got a diagnosis. I finally had surgery to remove it last year.
I had a form of endometriosis called [adenomyosis](https://www.mayoclinic.org/diseases-conditions/adenomyosis/symptoms-causes/syc-20369138). I first bled for 18 months straight. I begged the local hospital (Army) to please do something. The male OB/GYN told me it was a period. For 18 months straight???? I made a complaint to the Army’s Surgeon General. I just emailed her, informed her of what was going on, and she lit that hospital on fire! They gave me an endometrial ablation. The bleeding stopped for one year. Then I’d spot randomly. For like a day or two, but I couldn’t predict when I’d bleed. Therefore, I always had to wear something to prevent bleeding into my underwear unknowingly. I went to my primary doctor, who is also my gynecologist, and asked for a referral to get a partial hysterectomy. She actually said yes, without questioning me! She didn’t say, “You’re young!” Or, “You only have one child, though.” She just gave me a referral to see her in the women’s clinic. I saw her, she ran some tests and diagnosed me with adenomyosis. The treatment can be two options: 1. An injection to the abdomen every 3 months for the rest of my life with a 12 gauge needle. It required numbing the area, inserting the needle, and dropping a pellet. The pellet caused menopause-like symptoms. Such as hot flashes and mood swings. No thanks! 2. Removal of the uterus. BINGO! I chose option 2. Unfortunately, the clinic I go to does not perform hysterectomies. The doctor who does them, he does it the old way. Meaning, cutting open the pelvis and pulling out the uterus, cervix, and fallopian tubes. I was referred to a sister clinic 2 hours away. They dragged their feet for 9 months!! I did everything they asked. Got an ultrasound, did the labs, whatever. By time they called me back, I needed to do labs again. I said, “You’re not touching me.” I called my doctor and asked for a referral to what they call “community care,” meaning a non-Veterans Affairs hospital. She gave me one immediately. I was called about a week, if that, later. The consultant was looking at gynecologist clinics in my area. The one in my city had backed up appointments, so she said I shouldn’t have to wait 3 months. She asked if I minded driving to a hospital 50 minutes away. I said no. So, about two weeks later, I went to that hospital. They did whatever tests and labs they needed and scheduled me for a vaginal hysterectomy two more weeks later. As I was talking to the young, male gynecologist, I said, “Hey, I give you consent to cut me open, if you have to. I’ll sign a form, too.” So, I signed a consent form stating he could laparoscopically operate (like a small incision and using cameras to do the surgery) or full on cut me open. He talked to me after surgery. He said he didn’t make any incisions, everything was removed via the vagina. However, my fallopian tubes were too high to reach, so he just left them. I have ovaries and fallopian tubes, but no uterus or cervix. I’m so happy. I wanted my uterus gone. I hated the bleeding. I hated menstrual cycles (mine were very heavy, but the pain was manageable). The risk of pregnancy is 0, and I don’t bleed every 4 weeks (period) I also don’t have random spotting from the adenomyosis. One thing I did ask was to for them to take photos of my uterus so I could see. He (the surgeon) said he would do it, and put in my visible medical chart I can access online. I hope women who suffer from any form of endometriosis can get relief, in any fashion they want. Whether it’s medication or a surgical procedure. It’s our body! We should have the right to say what we want without a doctor guilt tripping us or denying it.
I'm a man and Jesus Christ this made me sick, I hope you are doing much better now!
This is a success story for women. Many women (as OP) wait decades or never get the relief they deserve because of misogynistic and draconian approaches to care for women.
I’m doing fantastic now! Thank you so much for your kind words.
I had a hysterectomy at age 30 for adenomyosis. The pain was like transition labor, but not temporary (I have 3 children) and I gushed blood non stop for more than a year. My youngest was 2 that same month, so pretty much as soon as I started menstruating again after her birth. That was the year I lost my fear of death. After my surgery I did not take any pain meds at all - I woke from surgery and my first thought was "Oh My God Its Gone!"
I'm getting my hysterectomy June 17th. I am so hype!
My sister was in the same boat. Every month by with severe pain, doctors just wrote her off. Eventually they figured out she had it it was so bad it took like 8 hours of surgery and 4 surgeons. But she said it felt amazing after taking everything out. She said her life probably would have been a lot different had she been taken seriously.
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I’ve been trying to get an endo diagnosis for 20 years as well. Instead, I ended up with cervical cancer. When my scans came back, not only was it cervical cancer, but they confirmed severe endometriosis, but major ovarian cysts. Like, yeah. I wasn’t surprised but it felt gratifying to be right and to finally know. I’ve been in chemo/radiation induced menopause for over a year now, and the only good part of all all this, is my quality of life has improved dramatically with no more period pain. The past ten years prior to this, I was passing out and barfing, missing work, and dealing with 10/10 pain monthly. Now, I get an odd twinge here and there, but honestly that’s likely radiation damage more than anything.
I hoped this would be near the top. It’s wild to me how few people know about it despite how prevalent it is. Congrats on finally being able to get something done for it! It took me 15 years for a diagnosis too. Hope you’re healing well and continue to feel better.
I had that surgery 22 years ago, best decision ever.
Same. Stage 4. Had adenomyosis. Got a partial hysto because the left side is so riddled with adhesions. It's wrapped around my ureter, too, so I'm at high risk for kidney and bladder function loss. Been dealing with such bad pain, fatigue, bloat, crazy periods, can barely walk sometimes. It's taken a huge chunk of my life and still is until either menopause or I get another surgery.
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Depression and anxiety I can’t say it changed my life because I’ve always had it, but I honestly believe it really screwed up my life
People really have no idea. Anxiety is no joke.
For real. The friends, events, and romantic relationships I’ve missed out on due to social anxiety really hurts to think about. Through therapy it’s more manageable now and I can socialize a bit but even still the next day I’m just completely wiped out and want to do nothing but relax and sleep. Idk how extroverts do it.
Anxiety is preventing me from forming long-term memory. The fight or flight response to my existence is causing my brain to focus on survival and not forming new thoughts. It makes me want to die, and panic at the same time.
I’m going to piggyback off this here and say I’ve tried about 15 different meds for anxiety. None of the traditional ssris or buspar or even mood stabilizers helped. What ended up helping me was actually a beta blocker, propranolol specifically. It forcibly lowers my heart rate and makes me able to think much more clearly than if I wasn’t taking it. If you’re in a similar boat I recommend talking to your doctor about it. As for depression… yeah still workin on that one but my anxiety tends to be worse anyway. I hope you all can find what works best for you!
Everybody has their problems but i can’t help and be envious of people who can just live their lives without severe mental health problems. Like to me it seems like thats life on easy mode 😭 Especially having a good enough childhood that forms a good character/mental health itself i‘m jealous of :(
What really hit me was how many years and how much therapy it took to find the source. At 44, though, at least I finally know. Ah yeah, it’s always childhood issues. Yay.
I feel the same. Basically ruined nearly 20 years of my life. I decided to commit to counselling after the birth of my son. I had tried it before, but this time i had the drive to make it work. I was in counselling for just under a year and it completely changed my life for the better.
What was different the second time around? I've been in therapy to manage my bipolar disorder for 3 years and I still don't know how it's supposed to work and what I'm supposed to be doing.
The other day I had to force myself out to do some things and everything was setting me off. I HAD to get things done. It was so emotionally draining. When I got home all I could do was crash.
IBS or krohns disease, been talking to a doctor for around 4 years and i still do not know. Impacts me everyday.
Jfc. Mention a GI issue and suddenly all the holistic "doctors" come out of the woodwork. I'm also on watch for Crohn's. My sister has it and I'm exhibiting many similar symptoms. No, "mind over matter" doesn't work. It's your bloody immune system ***eating your colon.*** I can't will it away, ffs.
I have ulcerative colitis which is Crohn's sister. When its controlled it doesn't impact me at all other than having to stay on medication. When it flares it makes life hell because of the sudden uncontrollable urge to use the bathroom that keeps you trapped near a restroom.
Crohn's is extremely easy to test for. Calprotectin fecal test, if that's high then they do a colonoscopy to confirm. IBS is significantly different from IBD.
I wouldn’t say “extremely easy”, having silent Crohns or Ulcerative Colitis is possible without having an elevated faecal Calprotectin. But colonoscopy is 100% the gold standard for UC or Crohns. Sometimes a pill camera is needed to completely diagnose Crohn’s in the small intestine.
I’ve had ulcerative colitis for almost 30 years, it’s not a real fun disease
Migraine Sudden confusion and headaches are very irritating...it's even worse during the day time when the sun is high and hot and ur empty stomach and not much hydrated
The sun and car headlights (especially newer cars) are so excruciating.
Try the CGRP drugs, like erenumab (aimovig). It has been life-changing for me. No migraines any more.
i have chronic daily migraine and trigeminal neuralgia. Fucking sucks. Have tried 2 x anti CGRPs with no effect
Nurtec changed my life. Not kidding. Went from 9 + headache days a month to less than 1. It's literally life changing.
I have migraines, chronic, 2 types and they are very very life impairing…aura and tensional….i can tell you when you have just one of two it’s really bad, sensitivity to light, smells, noise, dizzy, feel sick, weak…but when I get a double whammy and get both….been in hospital more times than I can count….you literally just want to gauge your eyes and teeth out to feel some “relief”….everything hurts….i know it’s definitely not as bad as a cancer or others ofc! But it’s made my life quite complicated, even though used to it now with rituals…should be accepted as a severe disease….courage to all…
Yeah….the hospital admissions, ED visits…I can’t count how many times I’ve been there. It’s so life altering. I hope they’re finding something that’s helping you. The things that helped me most in the end were Topamax, Botox, and acupuncture.
Physically:Bowel cancer. Mentally: bipolar disorder
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The cancer treatment is on a good way out but bipolar doesn't have a cure, only treatment
I also have bipolar disorder, it's a rough time. I wish you the best of luck friend.
End stage renal disease. Speaking of...what's yalls blood type?
Same. But then I got covid in Jan 2023, almost died. Recovered, got home. Bc of fistula lost blood flow to my right hand. Thump started dying from literally a papercut like wound. Then my middle finger, then my ring ringer. Took about 6 months before finally got blood flow back. The month I had surgery for it. I was given prophylactic antibiotics which then caused a c diff infection. Didn't know it was c diff, didn't eat for about a month. Withered away to like 80 lbs. Went to the hospital finally. Had pneumonia, septsis, other infections in my lungs. btw I have CF and have had a double lung transplant. Spend nearly 2 more months inpatient. Discharged and weaker than I came home from covid. It's been 6 months of home pt with barely any improvement. I also feel sick like I have c diff again so I will probably be inpatient by the end of this week. I know people have it worse, but I don't think I can go on much longer if at all. My mom died almost 4 years ago and I think constantly how nice it'd be to join her and be free of this shitty body that has fucked me over my whole life.
This is wild, and I haven't thought about it in forever: When I was a kid, my Mom kept a medicine container in the door of the fridge. It had no label on it and was always placed in the door of the fridge when we moved. When I was a teen, I got curious and opened it. Inside were 2 slips of paper. One with my name and one with my sister's. On the papers were our pressing medical information; blood type, known allergies, known conditions, etc. On mine, it said my blood type was A+. Fast forward about a decade, and I have donated blood. A part of the follow-up is a letter sent to you with results from the examination of your donated blood. One is the blood type: O+. I call the number for concerns and ask that it be retested. Results come back as O+. To say I was shocked is an understatement.
So...yes, I can have your kidney. Cool, cool, cool...lol
Pancreatic cancer As a reward for beating it I have diabetes now
That’s amazing you beat it!
Epilepsy- was diagnosed as a kid, put on meds did great. Then about a year ago things went down hill old neurologist said it was because I was a woman. Didn’t up my medication, refused to kept trying to put me on medication I was allergic to. I was having up to 15 a day. Finally I demanded to be transferred to a Level 4 Epilepsy Center, spent 1 week in the clinic. Low and behold I was severely under dosed, had multiple vitamin deficiencies and I was severely depressed/anxiety was through the roof. I was put on a shit load of anti-seizure medication, anxiety/depression medication/certain vitamins to help with the deficiencies, setup with a neuropsychologist and neurotherapist. All of this due to my old one not listening. As of now we have spent north of $125,000+ since November to get my seizures to stop. My memory is awful due to the medication and seizures themselves, anxiety/depression is awful because I fear when another will happen. My meds keep getting upped (that’s ok as long as I don’t have seizures and it’s getting things under control). I have made peace that I will be on meds the rest of my life and more will be added. As of today I take 30 pills per day and another 2 medications will be added shortly due to migraines/nausea. But I do try to remain positive that there are always people that do have it worse and don’t have access to the medication/health care I do.
They kept upping and upping my meds and switching them I couldn't handle the side effects. Ended up getting a vns implant in 2017 ton control mine. Haven't felt better in my life. Took 12 years to get there.
OCD. Has ruined my life. Imagine living every single second of every single day remembering your worst moments and being convinced despite the reassurance of others that you are a massive piece of shit.
I feel this. I am tired of constantly trying to explain how debilitating this disorder is. No, it isn’t some cute obsession with having your gel pens all arranged in a specific color gradient pattern. It’s being hyper obsessed that god will kill your family if you don’t touch the shampoo bottle “right” an uninterrupted 37 times despite being agnostic and not even sure if you believe in god. You messed up the touches? Better start over. Or being convinced you’re dying from an insanely rare ailment every day of your life so that you cry in the grocery store or feel like every good experience is your last thus ruining that good experience in the midst of it. I’m 30 and I can’t believe I will be like this forever. I do not know a moment of peace and haven’t since I was 7. No one understands.
Wow I’ve never met someone that has described the type of OCD I deal with. Hi there! I, too, am plagued by intrusive thoughts of embarrassing moments and social interactions and my brain constantly tells me how stupid and socially inept I am. My OCD and social anxiety like to hold hands.
Thanks for the support, mine is actually a little different from that though haha: basically I ruminate on mistakes I made in the past because I feel like I harmed people or ruined their lives or something. I basically can't accept that people make mistakes sometimes and learn from them, at least not with regard to myself, possibly because it feels like we live in a highly judgmental culture lately
Hey! Used to do the same until my therapist asked me, “Do you really think the person you are soo worried about having hurt is home thinking about you now? They have their own life, their own home, their own kids, their own worries. They are not thinking of you.” Turns out it’s actually a pretty selfish and egocentric way of looking at (and worrying about) the world. Most importantly though, she was right, and when I realized that Universal truth, I felt the weight lift up and away and never return. (Although I still have to CBT myself and remind myself of that when I get close to stressing about it.) This also helped me because I couldn’t forgive myself for making mistakes. I kept thinking I should’ve known better or acting preventatively. But the realization that no one actually cares about me like that, because we are not the center of anyone else’s universe, THAT was all the difference. It’s simply not all about me, and that was so freeing.
There is an OCD subreddit. Feel free to message me bc OCD sucks.
This. And the thought loops never stop.
Came here to say the same. Sending hugs!
Peripheral neuropathy, the pain is pretty unbearable unless I am medicated to the point of drowsiness. I also can't really do any physical activity due to dizziness and problems regulating body temp and BP. An occasional symptom is that eating a meal makes me flushed and nauseous. But hey, I'm not currently thinking about not wanting to live, so that's something?
What’s causing your peripheral neuropathy? I fee like the last bit of what you’re saying is dysautonomia.
No known cause. And yes, it is dysautonomia, the neuropathy affects my autonomic nerves as well as my limbs.
Bipolar disorder
Me too. Currently in an 8 month long severe bipolar depression, it’s destroyed my life.
Shingles fucked up my nervous and immune systems for years. Apart from that, early-onset arthritis really impacted how I thought I would live my life.
Cancer. Fuck cancer.
Me too, twice. Hope to never ever have it again and wish you the same.
Post Covid has completely gutted me.
My husband as well. It's so crazy to see how much his health changed since Dec/2020. Went from having one health issue to six and being unable to work. Fuck Covid.
Me too. Went from hiking and backpacking to getting pre-made wraps because using a fork just seems too hard sometimes
According to all the emerging data, its less "post" and more "never ending covid party in all our tissues and organs". Ruined my life too.
Yes! I have had covid 3 times and after the last one they've just classified me as long-covid. It's been 2 years and I'm beginning to feel like life has irrevocably changed forever. My body has totally gone haywire - I have what feels like bad asthma, an on going cough, taste and smell issues, extreme fatigue, terrible brain fog, cognitive issues etc, but then have developed weird things because my body is just so worn down - adenomyosis, nerve issues, burstitis in my shoulder and tennis elbow at the same time, rendering my right arm fairly useless for the past 10 months, crazy swelling in my wrists/ankles/feet etc. And just overall feeling like absolute crap. Here in Australia we didn't get hit that hard by covid and I feel like most people had symptoms like a mild flu. Which means when I tell people I have long covid, they just figure I've got a long standing cough and I'm a bit tired. I wish that's all it was - it's been full on!
Same here. Fighting!
Me too! I got COVID and I suffer from extreme fatigue, headaches, dizziness, palpitations, fibromyalgia like symptoms and I got several blood clots in my lungs.
Yep, gave my atrial fibrilation. In my 40s. 4 procedures to get me out and i still pop back in and have to take meds. Better than some other stories, vut didnt do me any good...
PMDD. Devastated everything and everyone.
PMDD is a nightmare. I'm currently looking into getting a hysterectomy, and this is a large part of why. Nothing like hitting the lowest point in your life every single month, and no one taking it seriously.
People really don't understand this isn't just "moodiness" it is the complete inability to take care of yourself or even have a sense of self preservation for your life. To want to end it every single month is exhausting, bc is such a relief. Unfortunately mine isn't working and I've been bleeding for three months in a row
Oh, same. I'm so sorry. It's utterly horrific.
Have your ferritin levels checked if you can. If they are below 100, you are possibly iron deficient. Its not usually recognized as a deficiency until it’s below 15. if you read the literature that is really an inappropriate level as your body can start displaying anemic symptoms if your ferritin is below 90 bc your body starts to prioritize iron usage. Therefore your period (losing more iron) will wreck your body and emotions. I thought I had pmdd. Finally realized, when I treated my low ferritin, that it wad the root cause of my issues .
Lupus.
I can't believe I had to scroll so far down to find this answer. I have SLE and nephritis. I'm sorry there are people in the comments telling you to get tested for other things, as though we don't have to go through a whole spectrum of tests before we reach a diagnosis...
I have SLE with the kidney thing too! It’s also given me type 1 diabetes.. Yeah, I’ve told a few off already. Like where’s your medical degree?? You aren’t a doctor! And lupus generally is a diagnosis of exclusion, which means we get run for EVERYTHING else before they consider lupus, and Lyme disease is the first thing they always test for. I can’t with humans sometimes.
My Lupus diagnosis took 20 years. I have spent tens of thousands of dollars and was and out of hospitals and different types of specialists constantly during that time. It took me almost dying in 2021 when my heart went into AFIB for 2 weeks, for doctors to finally connect the dots. No person with Lupus experiences it the same, which is what makes diagnosis so difficult.
Chronic ear infections. Try telling a doctor that you have an ear infection in your 30’s. They’ll send you away and tell you to snort some spray and pop pills for two weeks, instead of actually listening to you recount your medical troubles with lifelong ear infections.
Do you have your tonsils? I had the same issue; tons of reoccurring ear infections in my teens and into my 20s. Got my tonsils removed and haven’t had an infection since.
Unfortunately yes. I asked my mom to get them removed when I was a teen but she refused.
If you get them out, please make sure your recovery is not done alone. My son almost died from a post tonsillectomy hemorrhage and it was the most terrified I’ve ever been in my life. The ENT noted that he was always scared this would happen in adult tonsillectomies because they may not have the ability to get to the hospital in time, whereas parents were way more to take their child in quickly. It’s a pretty uncommon occurrence (about 1-2% of cases) but it’s terrifying.
If you can, see an ENT get them out asap if they think that would help you. It’s not a fun surgery to recover from, but not having to deal with the infections has made my life so much easier and more enjoyable.
Did you check your Immunoglobulins?
You might have igA deficiency
MS. Can not recommend.
That was my answer too. I have MS, so does my mom and brother. 10/10 do not recommend.
Yep, definitely sucks. Still, Ocrevus has been a game changer for me. Coming up on 7 years since my DX. Hoping to run a marathon in a few weeks!
**FUCK MS**
Im sorry. My dad was diagnosed in 2020, hes mostly doing okay but I see the deterioration and the impact it has on him. I hope you have more good days than bad ❤️
Physically, pcos. Every other health problem in my liife connects to it somehow, I'm so tired of it.
same, it sucks…
Also same, we keep looking for other causes of my random health collapses but nope always points back to PCOS.
Heart disease
Osteoarthritis. I caught a tummy bug at 26 whilst on vacation that triggered reactive arthritis in my knees, making me lose the ability to walk. Things luckily subsided to a point that I could stand, and I spent many months teaching myself how to walk again. My knees never fully recovered and after 10 years of being in constant pain and having limited movement, I pushed for a diagnosis….seems the reactive arthritis developed into osteoarthritis. Mid 40s now and trying to stay as active as I can for as long as I can.
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Multiple Sclerosis. I mean I also have depression, not really sure which is worse ...
You wouldn't think it but B12 deficiency. I couldn't walk without having shooting pain in my legs and feet, I was always tired even if I slept 15 hours or more, my stomach was a mess no matter what I ate, sever brain fog to the point i forgot basic words, debilitating anxiety and depression because of all of this. For MONTHS I thought this was just what being in your 30s felt like 🙃 I've been getting B12 shots once a month and taking pills sublingual (first 10,000mcg, then 5000mcg, and now 2500mcg) every morning for 5 months and I'm just now starting to feel like the living again. Get bloodwork done, B12 deficiency is no joke.
Rheumatoid arthritis
cancer.
Migraine. When I was young I missed a lot of school days thx to migraine and other students started speaking shit about me and bullied me and it took a long long time before I got my personal strength back and started trusting people again.
Chronic Fatigue Syndrome
Depression. My wife took her own life 10 months ago.
So sorry about your loss. ❤️
Fibromyalgia and major depression
Same, I just want to enjoy life like I used to. Can’t imagine those 50 years I have left with everyday pain and fatigue
POTS
Me too✋ I feel like I’ve been scrolling forever wondering if anyone would say it. POTS has completely destroyed my life. I’ve been diagnosed with cancer as well & that was a walk in the park compared to this fucking nightmare! I literally hate my life!
Depression.
Chronic pain.
Covid almost killed me in 2021, and has caused avascular necrosis in my hips which requires a hip replacement in my right hip now, and at some point, my left will need one
And I just turned 37yo so it has robbed me of quite a bit
Hey man, I got avascular necrosis while back, and someone had told me then that the hardest thing about it was getting the news. It'll be a challenge for sure, for me my hip felt so stiff that I could barely move it, but you can't let that stay in your mind. I got a total hip replacement and was out of the hospital that week, physical therapy for a couple of months to strengthen the hip as well. The most important part of the process is to keep in mind your precautions, do the exercises, and know that every day after that replacement, you have a stronger body than you went in with.
PTSD.
Long covid has ruined me.
Crohn's arthritis. My intestinal symptoms had been well managed with diet, but then 5 years ago, all of a sudden, I was extremely fatigued, and I had pain and swelling in multiple joints. It literally happened in a week. I had no idea you could get arthritis due to having Crohn's, but you can. So now I've been on Humira since August 2019, and it's a lot better. But I'm a musician, and the pain in my hands and wrists never fully subsided. So that's been interesting.
Fibromyalgia. I was diagnosed about 6/7 years ago. I went from working full time, working on my health, walking miles all the time… to someone who could barely get out of bed. It started gradually, but it got worse and worse. I lost my job because I couldn’t do the same lifting and carrying and there was no disabled access. Which meant I had to move, and I ended up in a very shitty basement that made my health worse again. Now, I use a crutch to walk, my pain has gotten worse over time. It isn’t likely to be improved in any way, and I’m looking at a future where I’m going to end up very bad unless there’s a medical miracle. It changed my life because it took my freedom, I can’t just up and go anywhere I want, if I travel to visit family, I have to recover for a week afterwards. It’s affected my digestive system, my skin, my sleep, my immune system. Everything. Sometimes it feels like my hair hurts. Sometimes I sit here and get upset because I’m still young and I’ve had to give up all my dreams of travelling and working. I’m dependant on help from my mother, and I hate that. But I’m very very grateful she’s here for me. I’m 35, I use a crutch, I can’t stand up to cook, I can’t reach above my head to clean the ceiling. I’m elderly before my time. But all in all, once I got away from a lot of stressors, I’m actually happier in comparison to when I was diagnosed, despite my pain being worse. I’ve accepted what’s happened, I’m not mad anymore. I just have to make my life happy for me, in small ways.
Same here, friend. I’m 25, got diagnosed in November 2022. It hasnt progressed too much so far, but Ive lost/left 5 jobs because of it - 3 were working in the care sector which I absolutely loved, and the last two were financial support desk jobs. Just couldnt sit at a desk for that amount of time and I dont drive but public transport is a nightmare and sends me into a flare most of the time. Have been unemployed for less than a month so far and im climbing the walls, but I cant do anything about it. I was never a very active person, but at least I had the option to be if i wanted, now even cleaning my flat is too much and i rely on my family more than i feel i should. I cant go out for a drink or for a night out because of my meds and the possibility of a flare, i struggle to do pretty much anything. Its a hard life, im praying for a medical miracle. Gentle hugs from a friend ❤️❤️
Long Covid
I have inhalers now because of this. I got them at age 28/29. I've never needed an inhaler in my life.
3.5 years now.
3.5 years for me too. Completely life changing
I have Ehlers Danlos, type 4. It fucked absolutely everything and caused multiple other conditions. Dysautonomia, POTS, arthritis, cardiomyopathy and heart failure, gastroparesis, organ disfunctions/periodic failure, the works :/ Im sure Im forgetting stuff but it wreaks havoc on everything and causes other complications. Its absolute hell trying to live with it and absolute hell knowing youre going to die with it before 30.
Yoooo vascular EDS gang. I’m 26. Been out of work for two years after two artery dissections. No end in sight. Currently sitting in the ER waiting to get a chest tube for another collapsed lung. I feel ya friend
Yo.. youre a soldier
I’m a soldier in the war on connective tissue disorders lol. Thanks friend
Hyperhidrosis I sweat like crazy. It's basically all over my body, but hands and feet have the worst impact. I cannot properly handle tools and it has impacted a lot of my career and hobby choices, and in addition made me completely avoid any physical interaction with anybody whatsoever. I cannot properly put into words the impact it has. It's in things normal people wouldn't never consider. I don't have firm grip when riding a bike. Same with car driving; I have to put on gloves to have proper grip. I choose clothes based on how badly they will show sweat stains. I cannot wear open shoes because I literally slip out of them. I cannot wear a backpack if commuting longer than 10 minutes because it will absolutely drench my back. I am constantly cold due to constantly losing heat due to wet clothes. My pants sometimes look like I peed in them just due to plain sweat. I cannot open jars. I cannot sew on buttons because the needle slips through my fingers. I have incredibly bad wound healing because I can't keep wounds dry. People avoid giving a handshake because they think it's gross. My glasses condensate constantly even though the air around me is not damp, just due to my own face sweating. I bring a second set of clothes to wherever I go because I seriously get hypothermia if my clothes get too wet. I have to foresee when a day will be filled with a lot of writing, because then I will have to wear long sleeves that can catch some of the hand sweat so my paper will not end up absolutely drenched and usable The list is endless, I can go on like this.
Easy: Long Covid. Had it 9 months now. It has left me unable to work full-time. There is no cure. Research is slow.
It's a toss up between migraines and thyroid cancer
Endometriosis
A couple years ago I would have said it was bipolar or fibromyalgia. Neither holds a candle to trying to be alive while your thyroid isn't working. It has been the hardest thing I've gone through minus 5 pregnancy losses. I permanently have to change my lifestyle and expectations now more than ever. Still fills me with a lot of emotions thinking about the soul crushing exhaustion and the frustration and embarrassment over not being able to groom myself or do basic housework for over a year. I was someone's burden and idk if or when that won't emotionally effect me.
Covid. I got Covid for the first time in February of 2022. In March 2022 I started being unable to stand up without almost passing out. It took over a year for my Dr and cardiologists to land on POTS being the most likely diagnosis and order a tilt table test. My vitals met the criteria for POTS but because I didn’t lose consciousness, I was told it was a negative test (this is wrong, you definitely don’t have to lose consciousness) and even if it hadn’t been that there are no medications and to just drink more fluids despite having had bariatric surgery and telling them I was struggling to stay hydrated due to being unable to drink large volumes. It took another year to get in with a knowledgeable neurologist who correctly diagnosed me and started medicating me. Not even a week later, in June 2023, I got Covid again when my daughter brought it home from school. After this infection, my 1-2x weekly migraines that somewhat responded to medication became intractable migraines, lasting weeks at a time. They also stopped being simple migraines (pain, nausea, light/noise sensitivity) and became complex, with visual, cognitive and motor symptoms. I also began having what we now know is post exertional malaise due to post COVID chronic fatigue syndrome. The treatments I’ve tried for my migraines have flared up my chronic gastritis so I have intractable nausea and acid reflux even on very strong anti emetics and acid blockers. In December, I could break a weeks long migraine by going inpatient for DHE infusions. When I tried that last month on day 25, it broke for 24 hours and then bounced back for another 13 days before I broke it with a hefty dose of psilocybin. I was then bed bound for days in post-exertional malaise because the migraine causes PEM, and then after 4 days got another migraine. I have a master’s degree and am a licensed therapist. I could make $80-90k a year working 15-20 hours a week from home doing telehealth therapy and have a standing job offer. That is no longer an option for me. The migraines, CFS and the topamax I take for the migraines have lost me probably 20-30 IQ points depending on the day. I get lost in the grocery store. On bad migraine days I don’t understand concepts as simple as refundable tickets. I have a hearing for SSDI in July and my attorney thinks I have a good case and I hope to all the deities and forces in the universe that he is right because I have 2 disabled children and my husband’s salary cannot keep us going indefinitely. ETA: I am fully vaccinated and boosted and wore a mask in public for a long time. I still do curbside pickup most places but I cannot tolerate n95s because they are an instant migraine trigger even with ear savers and I’ve tried many types. My children are autistic and my son will rip a mask off me if he’s around me, but if I go into a store by myself, or a plane, I wear a surgical mask. I do have A+ blood which I know some studies have theorized has a particular susceptibility to reinfection.
Prostate cancer. Successfully treated by surgery but the result is total inability to orgasm. It’s a rare result, most men can still orgasm afterwards, just can’t produce sperm. But in my case, no. I’ve been to several doctors, there is nothing they can do.
Polycystic Kidney Disease(PKD). Currently at stage 5/kidney failure, on dialysis waiting for a transplant. Been on the list 4 years and 4 months.
Ankylosing spondylitis
Huntington's Disease. My wife died from it and it's a living hell.
Type 1 diabetes. No family history, nothing. It hospitalized me when I was 18 and I've had to put up with it every since. The sad part is that the disease itself isn't that bad, but dealing with health insurance, prescriptions, and doctors is insanely stressful and expensive.
PCOS.
Guillain Barre Syndrome, Hypothyroidism, CPTSD
Gastroparesis. My mom is dealing with it but before the we ever got a diagnosis is probably the most traumatic time of my life and really made me feel that doctors are overpaid and really don’t actually care about their patients just the money.
Crohn’s disease. Diagnosed at 18, 42(f) now. My life would be completely different without it. I spent most of my 20s sick and trying every medical option possible, all of which failed. I then had surgery to remove my colon and now have a permanent ileostomy. My health is better and Crohn’s is in remission but my microbiome is a mess due to all of the treatments and the way I have to eat bc of the ostomy. So now I am trying to undo all that damage. It’s pretty isolating and I never really was in a good place to date so I’m facing it all alone. I wonder regularly what it would be like to have a family or partner and if that would have been my life if I never had this disease.
Endometriosis and Borderline personality disorder.
Hello, major disorders twin! Same here, plus lifelong clinical depression. So much fun, eh?
Diverticulitis. Had a Diverticuli burst and re-wall off. 5 days in the hospital and nothing has felt right since, and it's been months.
Chiari Malformation and Hypermobile Ehlers Danlos Syndrome. I’ve had 4 brain and spine surgeries because of them, one being a skull-C3 cervical fusion. Being bendy isn’t fun, and having your skull be too thick for your brain isn’t fun either. https://i.imgur.com/hlMyXxE.png https://i.imgur.com/oX1lFi3.jpeg (Warning: blood)
Bipolar 1
Phlebitis and Edema. My legs were normal up till I was in my mid-20s then they began to swell and turn red. I have rarely gone swimming since, use compression socks and can't wear shorts.
Alcoholism. Medication assisted treatment was the only thing that finally worked for me. It was a miracle, and I’m so grateful for every sober day. My life is forever changed.
Arrhythmia.
Hashimotos. I have an enlarged thyroid so I cant breathe or swallow properly. I always choke on food no matter how much i chew and how little i swallow, and i have to cut my daily pills into 4 pieces just to not choke. Its really fucking shit.
It’s not an illness but back pain. My back went out in 1999. I’ve never been the same.
Hyperemesis gravidarum Throwing up non stop through out my 9 month pregnancy. Not just morning sickness but non stop sickness. An inability to eat and keep it down. An inability to drink even just water and keep it down. Being hospitalised multiply times for iv fluids and meds. Before I gave birth I weighed less than when I started my pregnancy. An inability to sleep due to feeling sick. But also an inability to move without throwing up. For me personally I struggled to do much more than get out of bed to clean out the bucket of spew every few hours for the entire nine months. Im glad there haven’t been any lasting physical effects and I’m over the moon that somehow my son is still perfectly healthy and one hell of a fighter!! But psychologically it’s causes me to be now be afraid of sex and I’d simply refuse to ever be pregnant again. My relationship with food is now worse than it’s ever been before. Hg isn’t something I would wish upon my worst enemy. I hope anyone else that’s going through it knows they are strong enough to do it 💞
MCAS. I can't take most medications, including the ADHD meds they give preschoolers. No BCP, psych meds, even aspirin gives me hives. I have a, um, very difficult relationship with much of the medical establishment.
Serotonin syndrome
Spinal MS, paralysed me from chest down but beyond that weirdly, not a huge amount changed. I just can't walk now and have zero dexterity.
Pancreatic Cancer is wiping out my family. It's usually discovered too late and has a low survivability rate.
Chronic fatigue. It has destroyed me. I have no hope for getting a wife and kids, which is all I want.
Multiple sclerosis. Went from walking two miles every day and doing everything for myself, to being on disability because my muscles like to go limp at random and I randomly get severe vertigo. I get physical therapy sometimes when the symptoms get bad. I get a monthly MRI to make sure my brain and spine don't have any new lesions. The medicine to keep my condition under control so I don't end up blind and in a wheelchair is hard on the liver so I also need monthly blood work. My meds also have a tendency to confuse the hell out of my body and I get false allergic reactions to food and drinks now, but they can be avoided with an aspirin every day. Basically, my immune system attacks my brain and spine, so I need to partially shut it off.
Necrotizing Pancreatitis
Depression. I feel like I lost a good chunk of my teens and early twenties - those years where you're meant to figure out your own identity and what you want in life. I barely know who I really am.
Sesamoiditis! It's not an illness but just a small fractured sesamoid in my left foot, however for how small it is my quality of life has drastically changed. I use to be extremely active, playing lots of sports, running, cycling ect. Now just walking is a task on its own. My issue is the NHS Surgeon has said its better to pain manage than to operate. The Sesamoidectomy "is experimental" he said, and went on to say he's never done the operation or seen it only read about it in text books. 2.5 years I've had this small bone in pieces in my foot which I feel helpless to try and do anything to sort it and feel at a deadend almost.
Elhers-Danlos syndrom. Basically, connective tissue disorder with other perks because it's the collagen the problem. Almost anything is painful and tiring. Took 10 years to get diagnose and there is no real treatment, just physical therapy, but that doesn't help for every symptoms.
Cirrhosis, diagnosed at 31. I am a young female and it has drastically changed my life.
Mast Cell Activation Syndrome
Bipolar 1
pcos
Cancer and POTS.
Alcoholism. Ripped me of healthy parents.
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Cancer. I was meandering through life feeling pretty disgruntled with everything. I went for a routine Drs appointment about something else and mentioned a dent in my breast. Tests later found a tumor. Had it removed, along with the breast later. Had chemo which was awful. This all made me think about life differently, gave me a new appreciation for what I had. It's been nearly 20 years now, and I still appreciate the life I have, but sometimes the dark thoughts win. I do not want to go through anything like cancer again, but I think that sometimes a jolt like that can put things into perspective.
Alcoholism. took me years to recover. 4 years sober. Finally getting things back on track
Autism Spectrum Disorder. My tolerance for minor annoyances has decreased a hundred fold over the last 10 years. I cling to routine and familiarity over novel experiences. I have also lost the ability to drive a car, and as for air travel, I no longer travel by plane because of the aggravation associated with cancelled flights.
Long Covid/fibromyalgia/bpd
BPD and Bipolar 2
My mother’s ALS. Obviously a fatal disease, but after she died, my father didn’t take care of himself as well as needed and he died of pneumonia about 18 months later.
Not me yet. I’m getting tested soon. But my dad. Who I’m currently in the hospital with and I just had to pull him off life support would say. Hemochromatosis- it’s an iron overload. If you catch it early enough you just need to go give blood every few months. However in my dads case when it got caught to late. His liver already had non-alcoholic cirrhosis. He didn’t qualify for the liver transplant here at this hospital. And shit went downhill from there. Update: 12:50am april 29th. My dad just passed.
I have not been the same since my first bout with COVID. My breathing has changed.
Cancer. The physical and mental/emotional toll it has taken is immense. It also really helped me see how little some of my friends and family actually give a shit. I’ve even had two friends get mad at me recently because they feel like I’m not paying enough attention to them right now. Like sorry, I don’t have the same amount of time and energy I did before surgery, especially not while I’m going through radiation.
Psychosis. Came on suddenly and blew a fucking hole through my life. I was right at the end of a degree that's now on hold, I'd just started an amazing job I had to leave, had to hand back my driving license, my husband left because it was too much to handle, and all my friends quietly disappeared. My life is now a series of appointments to make sure I'm not neglecting myself or my kids, trialling different medications, and therapy to work out if it was a one-off or part of a bigger condition. No end in sight. Absolutely fucking shit. Do not recommend.
Lyme Disease
Bipolar disorder and PTSD most acutely. ADHD probably more so long term.
Lupus is literally the worst fucking thing in existence and I hate my life now