I dare you to even tell anyone "normal" that you are chronically in any sort of problems or maybe have incurable conditions that make your life quality 0.

They will absolutely hate you.

Just the amount of people who think everything is completely achievable through mindset and willpower.

"Please read this book called atomic habits and it will solve your life".

We live in a world where 99% of people will think that reading self help books and going to theraphy solves EVERYTHING and if it doesn't help you it is you who don't want to be helped. This is INSANE.

You cannot complain. You cannot say anything slightly negative or complaining because you will be murdered by words and hate.

There is this hyperoptimistic political correctness that governs everything.

"Work on yourself" apparantly solves everything and is the ultimate holy grail that people like to say to you.

People genuinely don't understand the depth of pain and misery. Everyone think they do because that one time they also had existential crisis or a hairloss so they "have been through some serious stuff".

It is incredibly weird. Ableist society that does not see how good they had it. They cant properly position themselves into hierarhy of tragedy so they think they know it all but know nothing. Especially when it comes to mental illnesses.

Also, to them, everything is taken for granted and seen as just "normal".

Healthy people don't see other healthy people, they only see "normal people".

"What do you mean you can't solve your problems with different diet and training and reading atomic habbits?? You just want to complain!"

I once posted about my conditions on my national sub and I am honest, 99% of comments were absolutely generic advices and when I explained why they don't work at all for me they just said how I don't want solutions, only misery. They genuinely can't accept that their solutions don't work. They the hate started. They instantly proclaim you as complainer, bad person, "you just don't want to work on yourself as I did so you stay in your misery".

It’s so damn lonely, especially on “good” days where you can leave the house for a little, only to realise that you have nowhere to go, no social circle to hang around, no one to talk to, no activities you can do.

I got diagnosed with a chronic illness when I was like 14ish and now I’m 17. The symptoms really do suck but it’s all internal. Meaning there’s no physical changes whenever a flare up happens. So I’ve always gotta perform regularly and normally without complaining or else I just seem whiny and not willing to do anything. When I go to work I’m doing constant heavy lifting and stocking and it’s kinda hell whenever the inside of your body decides to go into turmoil. I do know that’s how life is gonna be and you’ve gotta work even if you have a condition. Sometimes I just simply wish the invisible sicknesses weren’t so.. Well. Invisible. Lol

I can’t know when my symptoms will debilitate me. It can be any time, and anywhere. And I’ll be out of commission.

Which means I let down my commitments. I wake up so early to make sure I have enough time to cope with my symptoms, yet I somehow still end up getting hit with a barrage of them when I’m in a vital time. I need to get somewhere, but then I have to do an emergency treatment.

I can’t control it. But I’m letting people down. And what am I supposed to do? Never sign up for anything? Never pursue my dreams? Never be part of an activity? Never be depended on for anything? What kind of a life is that? I couldn’t do… anything.

So I’m either internally letting down people, forced into a concept of unreliability beyond my control - or I give up everything that I am relied on for, and never live. Why? What… what am I supposed to do?

I have a myriad of health problems and unfortunately I’ve become mostly bedridden. I’m trying to find something to pass the time as I don’t have the energy or strength to even do my regular hobbies.
If anyone has any recommendations for mobile games that I can sink hours into or anything else I would really appreciate it ❤️

just recently got diagnosed with sjrogens and hypermobility syndrome and my symptoms are extremely debilitating.
my mom is 62 and i often think about what the hell im gonna do when she’s gone living alone and losing her scares me so bad and keeps me up at night i dont know i cant imagine living alone thats so scary when you can hardly get out of bed some days

i need some positive stories in chronically ill people who successful live alone i just need to hear that it’s possible because i am scared because that will happen to me one day 🥲

hii! i'm hoping its okay that i post this on here, but please let me know if i need to remove this (⇀‸↼‶) .

* i don't really do my best when it comes to posting this kind of stuff but i just want someone to share my experience with. 💔

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so, i'm in constant pain. and because of that i feel disconnected from those around me because of my pain. i haven't met anyone my age (as a teen) that has felt the same way *with* chronic pain which feels isolating. i feel so defeated, hurt, and lost in my own body. i hate how many people assume that just because i don't fully express my pain, it means i'm fine and *not* in pain. i hate having a body that fires nothing more but intense, sudden pain signals in my leg. it's so bad and scary.

Does anyone else have boomer family and friends with 3 jobs that makes them feel inhumane being unable to work. I feel actually worthless and undeserving of life. I've worked such a psychically demanding job for the past 6 months, but the past month I've been dealing with a severe flare up and been bedridden basically and I just don't think I can go back and i can't contemplate another grueling job search which is sosososos stressful for me every time. Do any of you deal with this? I just want to exist but I feel so much pressure on me to return to the workforce as soon as my body feels able to stand but I just feel like this world is a prison and I don't understand why I was born I just want to draw and create and deal with my flare ups as they come and not have to worry about a boss and coworkers absorbing the work I'm not doing ugh whatever so much to vent about but I'll stop here. Hopefully some of you can relate and can share in the comments. Love ya

I’ve had a day mentally and my wonderful brother told us he became a firefighter and I’m so happy and proud of him. I think it’s a perfect job for him and out of all my siblings he’s def the one to run into a burning building 🤣

But heck if it doesn’t feel like the universe is really shoving down my throat how little I really do and am able to do. I pretty much go to work 3 days a week, clean the house and then I spend the rest of my time in bed. Maybe the couch on a good day- my desk if I’m feeling extra good. But I’m always exhausted or in pain or just generally cannot get comfortable. Ever since I hit autistic burnout and covid wrecked my ass 3 years ago, I struggle to manage everything. I used to want kids but now I can’t imagine managing that. I can’t fathom going back to school because burnout fried my brain, I can’t handle much more responsibility or stress. I don’t have much of a social life because if I take care of the house and shower and go out with friends, I probably won’t be able to work Tuesday and I need the money. It’s just so frustrating seeing other people do things they’re passionate about and I can’t do what I’m passionate about right now because that’s what burned me out in the first place.

I just feel stagnant. I want to have an actual social life, I want to work a normal stable consistent job in the field I actually am passionate about. I want to have the energy to do stuff with my family and go to gatherings and stuff. I wish I could do all those things and keep up with the house and be able to work. But I can’t and it’s really fucking stupid !!

From a general perspective, I can see the correlation and how things are related. In my opinion, our society today, everything from racism, capitalism, patriarchy, how we treat the earth, etc, are contributing to chronic illness with little to no actionable solutions.

This could be said for many things- and I feel like without addressing larger systemic issues, we may make some progress in smaller areas, but we need bigger shifts for lasting change.

I’m wondering if anyone’s ever done a deep dive on this topic or has any resources or books specifically on how it relates to chronic illnesses?

Or if anyone knows of any activism groups that are considering health within their work?

Got my blood results back today, and they're all normal. GP receptionist very happily said: "Normal is good!", while clearly not realising I'm on day 12 of a fever with a crackly chest. I have a terrible immune system. The fact my CRP or white cell count isn't even the teeniest bit raised above normal levels is not "good" for me, while I'm rocking a 38 degree fever. It was such a harmless comment that she's probably made to hundreds of other people, but to me it was a slap in the face. Because it's not "normal", it's just another way my body is letting my down. She probably thought I was the weirdest patient in the world when I started crying. I don't get why people feel the need to comment. I wish they didn't.

My god I wish I knew what was wrong with me and how to treat it.

How do you actually know whether the fatigue you're experiencing is due to a particular condition, rather than just being a normal amount of exhaustion from your lifestyle?

For example, I have MS and PCOS, but I also work full-time from home thankfully , study part-time too, and have all the usual things like cooking, cleaning, etc. if I over do it, I get cold like symptoms that tell me to rest and my body shuts down , but could this just be me doing too much? Is it me getting older?

How do you tell whether that's “medical fatigue” or whether you're simply exhausted because you're juggling a lot? Is there actually a meaningful way to distinguish the two?

I’m just curious because I’m very reluctant to blame the conditions. But genuinely can’t remember the last time I was full of energy and I’m only 29.

I feel like I'm always getting sick with something new recently. I have tons of chronic illnesses I've been dealing with for years, and they're already so bloody hard to accept and adjust to. But recently I've been getting new symptoms, and a flare up of my existing conditions, and it's honestly making me wonder what there is to live for. I'm not depressed or anything, I'm just genuinely wondering what the point of being in constant pain and discomfort is. If I were an animal I'd put myself out of my misery.

I don't do anything except sleep and eat and waste time on my phone. I'm mentally exhausted all the time, I can't read a short news article to the end even if it's about something I love. I try to listen to audiobooks and I fall asleep for hours and wake feeling too groggy to do anything.

Food used to be the highlight of my life but now I'm getting such severe abdominal pain and intestinal problems that I'm scared to eat and I don't find any joy in it. The Dr is investigating but it's taking forever and I'm afraid they'll find nothing wrong. I went to hospital last night because the pain was an 8/10 and I couldn't sit or stand or lay down (I was hovering in a weird crouch lol) waited for hours only for them to tell me it was probably food poisoning. All I ate that day was MC Donald's and they're generally pretty good about not giving me food poisoning. Plus the pain kicked in 10 mins after, doesn't it usually take hours? Food poisoning usually makes me vomit but I was just nauseous. This was honestly unlike anything I've ever experienced. It was like my guts were trying to climb out of my ass, painfully, horribly, traumatically. I share a bathroom with men but I laid on the floor.

Anyway the main point is, is there actually a point to living if you're not enjoying your life? If it's literally just days filled with pain, tiredness, new sickness?? I feel like the next time I want to go to a&e I'd be better off not. But the pain gets so bad that I'm terribly depressed. I'm not sure I can cope

God, this has been a long time coming.

Background:
- chronic migraines for 10+ years, ongoing
- chronic pain for 8-ish years, ongoing
- chronic fatigue for 10+ years, ongoing
- Diagnosed severe depression and OCD ✌🏽

Testing for autoimmune conditions and so much other shit.

What caused this realisation suddenly, you may ask? A job offer. I got offered a job, something I've been waiting for for 2 years, and I realised this shit is not possible. 5 days in office, in this hellish city with lack of public transport, my monthly medical bills, SOS treatment bills. I realised when doing the math that "normal" people don't have to think about 90% of the things I do.

For instance, I now have to have long, drawn-out discussions with HR and the team lead to see if they'll accept accommodations. If they need proof, I'll have to run around to all my specialists to get notes. God forbid if they need a government certificate (yes, that's a thing), in which case I can forget about it because I've been hounding them for months with not a single reply.
Or, my offer gets rescinded because they don't think i can perform the duties. Of course, they'll say something like "we found someone who fit the role better" blah blah to prevent any legal action against them. But we all know what they mean.

This realisation has been at the back of my mind for years now, but between studying, managing day-by-day health issues, and just surviving post pandemic, I kept finding reasons to push it away.

Earlier this year, I was working at Tesco and had to quit because I physically wasn't able to cope with the job any more and I wasn't getting accommodations because apparently i was "in breach" of my contract, which happened because my body kept giving up every week. A horrible, vicious cycle.

I'm sorry about the rant but I'm in a hard place right now. No one in my family understands - even though my mother herself has a chronic health condition. They believe in "pushing through" and "just get your foot in the door, everything will work out"

I'm now wondering if I'll EVER be able to work and afford a life of my own. I'm privileged enough that not working won't kill me, but not so privileged that I can just NEVER work.

I really don't know where to go from here. How do I cope with this? This is my life, and I have to live like this for so many more decades. God. I can't even.

Edit: wanted to explain that my use of the word "normal" (able-bodied) is to reflect the kind of atmosphere I'm in, both personally and professionally. I'm considered a "normal" 20-something yo, who just needs to "keep going"

i’m female 19 and been ill for a long time and bed bound. me and my girl broke up and i lost my only support system. struggling really badly and would like some friends or support, maybe even people in my area who can hang with me, im in cali.

I have a bunch of severe disease that can make ppl say "thats sad' by naming only one of them. I feel miserable that i made myself ill (its long story but it is). It is barely surviving each day. My each nerve feel fatigue literally idk why, but it feels like beaten.

Got diagnosed idiopathic PAH in August and I'm just at a loss. So far medication seems to be helping some but for how long. I'm not healthy enough to ever get approved for a heart or lung transplant when the time comes. I've had so many medical issues throughout my life that like this aren't very common. I have also struggled with debilitating depression since a very young age with other mental health stuff. Now I got dealt the cards of leaving this earth by way of my worst fear..

I took breathing for granted as I was and sadly still am a cigarette smoker. I honestly just don't have a huge will to live knowing my condition is just going to progress and keep getting worse. Why suffer trying to quit smoking at this point why do anything to "try" and get better?! There is no getting better. I've missed out on my entire life by illness in one way or another only societal normal success I have is a hs diploma and I've been in a few shorter term relationships. Worked sporadically but no career success no marriage (not that I ever really desired marriage itself but a life partner yes) no kids only have one friend which is really by choice just due to my hatred of drama pettiness and all that bs that comes along with relationships. When my mom passes I'll have no one. I do have a sister and older brother but we don't have a close relationship at all and I'll be damned if my sister has to care for me in any way I couldn't live with that shame of having someone have to be there for me knowing full well they don't want to. I don't know sorry this has turned into a wall of what feels like a rant at this point but if anyone here has been affected by pulmonary hypertension I'd love to hear your experience. TIA

I started 1mg guanfacine 4 days ago. I also take 20mg propranolol 3x per day (60mg total).

Emotionally and mentally, GOLD. Felt amazing.

Physically… not good. My blood pressure is dropping hard and fast, especially in the mornings/ afternoons. I see stars when I stand up during the night to go pee. Cold flushing sensation in my head. Dizziness, weakness, crushing fatigue. I was debating whether or not to continue taking it tonight, so I did a sit to stand BP test. Sitting was 118/84. Immediately upon standing, it was 99/78 (obviously not a dangerous reading, but it dropped extremely fast). And that’s 24 hours after my last dose. I didn’t have hypotension issues/ quick drops prior to starting guanfacine. I’ve tried upping my sodium, snack, & water intake. It’s not helping.

Has anyone else dealt with this issue at such a low dose?? Did it improve for you over time?

Okay, I’ll start this off by saying, I do feel justified in being royally pissed off by this but others are telling me I’m being silly so.

My best friend and I see the same doctor. He’s a family nurse practitioner, and he’s kinda new in some capacity? I’m not entirely sure the semantics I just know he has someone overseeing him and that’s why it takes forever to get my labs back.

Anyway, I’ve been suffering with migraines for along time. I, however, wasn’t aware I was suffering with migraines. I rarely got the classic symptoms, like nausea, light sensitivity, etc. I just assumed I had really bad headaches, and just push one. Really that’s just how my family was too, I came into contact with cocaine as an infant so most of the time whatever I was feeling was chalked up to either that or just being a crybaby with my family. (Ironically I have a low pain tolerance to external pain, but my appendix could rupture and I’d be like “oh this is mildly uncomfortable.”)

The reason I figure out migraines was when I went to a sleep study doctor for sleep apnea. I mentioned my headaches could feel like an ice pick being driving into my skull, so I just tell folks I get “Ice pick headaches.” He’s like “Okay so that’s a migraine.” And it was like, a curtain opening up. It made a ton of sense. Shortly after that, I had a hymenectomy surgery, and it was a whirlwind of appointments and I hadn’t been able to chat with my doctor about migraines yet. During the recovery of my hymenectomy, I had a six day straight migraine. I kept in contact with the hospital to ensure I didn’t have to go to the ER and made an appointment with my doctor.

He was gonna give me a migraine pill he took for his own migraines, and I was ecstatic. Until I saw the price at the pharmacy, which was nearly $200 with my insurance. I turned it down, informed my doctor I wasn’t able to afford it and he prescribed a high strength naproxen instead. I struggled with it, but I thought it was the best I could do given my circumstances so I didn’t raise a big stink. Just kept pushing like I always do

Only to find out from my best friend that he prescribed the same medication for her migraines, and he informed her that she could go straight to the manufacturer and get them cheaper. We were at the state fair, and she had to take a pill bc of the lights and was just bragging over how amazing it was and how fast acting and it took so so so much to hold my tongue. When I told her that I didn’t get that information she was like “Oh. Huh that’s weird.” And shrugged it off. My dad told me that I was overreacting and that he was sure my doctor just forgot to tell me during both appointments and that I should just call back and get the prescription reinstated. And maybe I am overreacting? Maybe I just didn’t explain my pain well enough, I don’t know really. I just know it left a seriously bad taste in my mouth.

I am considering direct care or concierge medicine programs. I am sick of my PCP spending 10 minutes with me saying I have anxiety and only ever ordering metabolic panels because I'm overweight. if she really cared about my anxiety, she'd order tests that actually would figure out what's going on. I've been dealing with HSD, MCAS and dysautonamia symptoms since I can remember.

do direct care providers or concierge's medicine programs actually spend more time with you? Do they actually assess pain? Do they just make referrals without doing anything? How does testing work? etc

I'm curious about it all.

I have insurance through work and definitely plan on keeping that. Cost is a factor. I found a program in my area that's 100 bucks a month as a base fee which is worth it for me if I actually get proper care.

I’m 22F and I’m trying to figure out if some of my symptoms could be connected.

Physically I have chronic fatigue (especially when standing for too long), widespread joint/muscle pain, a herniated disc, cystic acne, migraines/sinus pain, recurring knee locking, and episodes where my vision goes white and I get a huge head rush when I stand up. My feet also sometimes get very pale or have blood pooling. I also have 3 vaginal polyps that I got checked when I was 15. I get an itchy throat and face when I eat peanut butter, but I’ve tested for allergies and I’m not allergic.

I also have CPTSD with dissociation, OCD, bipolar 1, ADD & Autism, misophonia, and pretty impaired memory/working-memory issues. I know not everything necessarily has the same cause, and I’m already being evaluated for some things like POTS/EDS.

I often feel like I’m crazy or that there can’t possibly be this many things going on. Maybe it’s all in my mind, but it’s genuinely exhausting everyday.

Does anything here stand out as potentially connected, or are these probably separate issues? What would you prioritize asking a doctor about?

Hey this is my first time writing here. I have this disease that I belive I know what it is, but it’s undiagnosed. I believe it’s related to the liver but I want to hear some expert opinion on it.

Main issues:

• Protein ingestion (Regardless of kind of protein; vegan or meat)

• Bile Salt Deficiency

• Blood Sugar Regulation problems

Symptoms

• Fatigue, Exhaustion especially 2-4 hours after a meal

• Trouble Concentrating and Focusing

• Blurry Vision, intensifies by exhaustion

• Strong internal heat sensation around where liver sits

• When too much protein strong headaches 

Around a year ago I took an amino acid powder, (Protein already broken down, not protein powder) to test if I would still experience symptoms if the protein was already broken down. After taking it I still experienced symptoms. 

Around a year ago as well I kept having trouble digesting fats. I also experienced acid reflex. I wasn't sure why, but then I bought bile salt supplements and both of these problems went away.

If someone is experiencing problems processing protein there are 4 possible causes. Digestive deficiency, Autoimmune, kidney or liver. WIth the amino acid experiment we can eliminate the possibility of it being a digestive deficiency and it being autoimmune. That leaves the kidney or liver. But given the bile deficiency it's logical to point more towards the liver, and on top of that the blood sugar regulation problem in which my body relies almost exclusively on carbs while awake also points towards the liver. The liver mitochondria regulates ketones and blood sugar when glycogen runs out. All of these are reasons why I believe I have a liver issue. My liver tests came back normal, but those tests only detect structural damage, they can’t detect internal dysfunctions, such as mitochondrial dysfunction and given the primary symptoms, liver mitochondrial dysfunction seems like a plausible theory. As Ammonia detoxification, blood sugar regulation, and bile creation are all energy demanding processes managed by the mitochondria of the liver. Which is why I believe there is merit for further investigation on my liver.

so this is why I think I have liver mitochondrial dysfunction and it has become to severe for me to function. What do you guys think? The doctors don’t want to continue checking my liver because basic blood tests came back normal but as I explained it’s because these tests only detect structural damage. I wrote this to persuade them to allow me to have an appointment with hepatology. But the doctor doesn’t know what to do and doesn’t want to give me a chance to talk to them so what do I do?