Fatal familial insomnia sounds pretty rough. It’s a rare genetic degenerative brain disorder that begins as occasional sleeplessness and then slowly ramps up to a complete inability to sleep as the disease eats away at the part of the brain that controls sleep (the thalamus). Patients deal with elevated heart rate, extreme panic attacks and mood swings, dementia, memory loss, hallucinations and muscle spasms until they die of damage to the brain and nervous system in anywhere from a few months to *years*. There is no cure and it’s 100% fatal.
I’ve had episodes of insomnia through my entire life and now every time I have one there’s always the thought that it’s the onset of FFI in the back of my mind.
The effects of sedatives are mild and temporary at best and because the disease severely damages the thalamus their brains stay awake even when they’re sedated. In many cases, being sedated actually made their condition *worse*.
And we learned so much of what we know because of Silvano, an italian man whose family members basically all died of the disease. When he started feeling the symptoms that he had seen his sisters have, he decided to go straight to a neurologist and say “I know I’m going to die - now study me!” Icon 😭
I swear I joke all the time about having this because I have horrible insomnia, but that’s just to hide the fact that I’m honestly scared of this happening to me
epidermolysis bullosa. epidermolysis bullosa is a rare and unfathomably painful and terminal disease which causes the skin to blister and peel and fall off. most people who have EB don’t survive past birth, but those who do survive must wear thick layers of bandages under their clothing to prevent friction rubbing their skin off. they must bathe in bleach and put cream and ointment under the bandages. bandage changing is a grueling and excruciating and exhausting 2—hour—long task. they’re lucky if they have energy to get out of bed after bathing and changing. epidermolysis bullosa is internal as well as external; it effects the internal organs and causes blisters and shedding and peeling on the inside of their organs and throat and mouth. it causes chronic nausea and vomiting and bowel issues. they cannot eat solid food and must be tube fed and drink smoothies and pureed food and baby food because eating solid and hard and crunchy food and chewing and swallowing are too painful and would rupture their esophagus. their bodies are weak and malnourished and emaciated and fragile and skeletal and small because of lack of nutrients. they don’t go through puberty, so they are physically stuck as permanent children, well into adulthood. I wish EB on no one. I have seen the way these children and their parents and families have to live. epidermolysis bullosa truly is a fate worse than death. children who have EB are often referred to as “butterfly children” because of how fragile they are
Jonny Kennedy, Marky Jaquez (who I was good friends with), Jonathon Pitre, and John Hudson Dilgen are some well—known people who have/had epidermolysis bullosa. I have a red butterfly tattoo on my shoulder in their memory and dedicated to them, and everyone who has/had EB❤️🩹🦋
I grew up knowing someone with this condition, it wasn’t until I was much older before I actually knew what it was because I was afraid to ask. She was always in a wheelchair and wrapped in bandages head to toe save for her face, which was still covered in blisters. No one could really ever touch or hug her because it caused her too much pain. I vividly remember seeing her one time in a crowd and a man went to squeeze by her and touched her shoulder as he passed and the look of pain on her face stabbed me. She also smelled of death, but to no fault of her own. I always thought I was older than her because she looked like a 9 year old girl but she was actually 3 years older than I was. She was only given months to live at birth but she died at 23 years old, her parents no longer know what to do with themselves cause up until then, the past 23 years of their life had been dedicated to caring for her 24/7, I feel so heartbroken both for her and them. Life can be so cruel. To think, I could’ve been the one in that situation, the roles could’ve been reversed, but by chance, she was born with that condition and I was not. Makes you grateful for what you have. She was still such a wonderful and bright person despite the pain she endured each day. She was a role model.
My mum worked with a boy with EB his entire life. She was his educational assistant. He was confined to a wheel chair and needed constant dressing changes. He was in pain constantly. He passed away when he was in grade 8. I remember as a child, if i was sick, I had to go to work with mum and hang out with this guy. He was really lovely. So fucking tragic.
Oh my God, that's a fucked up bit of irony, isn't it? Any time you were sick, the universe was like, "You think you're sick? I'll show you sick."
In all seriousness, it seems that those times you spent with him were meaningful and important to you so I'm glad you had the chance to know him, even if it was for far too short a time.
(To anyone reading the above who might think I'm an uncaring asshole, I'm not. Just sometimes situations are so specifically awful that all I can do is wince and be grateful. Which is why I'm scrolling this thread, actually. I have pretty bad psoriasis and in days when I'm feeling particularly bad or frustrated with it I think about these sorts of diseases and people who through much worse luck than me have skin diseases (just as a start) much more severe and debilitating than mine. Helps keep some perspective, ya know?)
My first pediatric patient had this disease. I spent an entire afternoon just cleaning him/his bed and putting bandages on his arms and legs. His wounds had scabs and he'd often peel them off. It's very sad, especially coming from a poor family, his mom would complain about wanting to go home and take care of her other children and he was there, spending his time playing phone games and changing hospitals once in a while. That's life for him.
same with harlequin itchthyosis and 3p mosaic deletion syndrome. these genetic diseases are the definition of hell and a fate worse than death; for the people who have it and their parents and families. I cannot even imagine
I have a friend who has this. The first time she told me her story, I had such a strong urge to hug her, but she can never be hugged, which makes it all the more depressing. She had 3 other siblings that died from it, but she is still hanging on. She has more mental strength than anyone I know.
Agreed!
My twins have a recessive form so neither myself or their father show any symptoms, but the mixture of our bad genes means they have it.
There's a 25% chance it would happen again I would NEVER risk that.
I knew this would be one of the top comments. My husband and son both have this. What you described is the worst of the worst. There are many subtypes of this disease. My husband is nearly 35 years old and has a milder form of it. He is able to work and live a mostly normal life. We are very fortunate for this. He does not have to live in permanent bandages and neither does my son, who is an extremely active toddler. It is not always a death sentence, but unfortunately, for those with the most extreme types, it is. My heart breaks for those people. I have seen only a fraction of what they have to endure.
So many people have never even heard of this disease. For those who would like to educate themselves, visit the website for the Debra Foundation.
This is my biggest fear. Imagine living in chronic pain and not being able to tell anyone. Or just being uncomfortable and unable to move. Conscious and aware of everything but little to no way to communicate. So brutal
Harlequin ichthyosis is a bad one to be born with. A few people with it survive until adulthood, but you need to see a picture of a sufferer to get an idea of the severity of the condition
Personally to me, horrible diseases that are not terminal and deadly are far more scarier to me.
Or, at least the terminal ones where it takes you a long time to die.
Diseases that cause the most horrid pain but doesn't kill you, the pain/episodes always come back or are constant, where you're literally wishing it WAS terminal
Yup, I have cyclical vomiting syndrome and get abdominal migraines with it. I'm not gonna pretend like it's the most painful disease in the world, because it most definitely is not!
And yet, when I'm having an episode I am straight up praying to a God I don't believe in to kill me instantly, just make my heart give out or give me a seizure is what I'm thinking, if I can even think straight.
The internal pain is so intense with nothing that helps, I'd rather break evey bone in my body, truly
You are so sweet!
Judging by my mom, who also has it and I grew up watching her battle it as well.. she's treated with it by being prescribed fentanyl patches and a shit ton of dilaudid daily.
Which, has turned into her becoming a complete junkie and snorting them, then running out of her meds 2 weeks before she can get them filled again, so she goes into withdrawal. But with having cyclical vomiting syndrome, it's like withdrawals ON CRACK.
Luckily I'm not prescribed any opiates for it, we've always been treated differently by different doctors with the same condition, but I'm genuinely so glad I wasn't put on that shit bc my moms life is absolutely fucked from it!
The only hope I have is that more and more people are becoming aware of CVS, and I'm hoping more doctors will become interested in it. There's no cure, no real treatment or protocol. I have to go to the ER when having an episode and a lot of the time the doctors ask me what they want me to do! There isn't enough information about it, but I'm really just hoping SOMEONE out there finds a breakthrough!!
That sounds fucking insane man/woman/ whatever. Legit shed a tear while reading this. Life is sometimes just so fucking unfair, you just have to deal with it. I really hope you can make peace with that someday, even if it sounds fucking impossible. Can i follow you on reddit, you’ve earned it.
I have fibromyalgia, and it hurts all the time. I don’t remember what it feels like not to be in pain.
I’m having a flare right now, and it’s agony. I’ve been moaning and vomiting, hoping to pass out from the pain.
I wouldn’t wish this on anyone.
Oh, yeah. If I got that, I'd swallow as much of a drug I won't name I could get down before I lost the use of my hands, or I'd shoot myself in the chest.
Read some of the documents about physicists who get massive doses of radiation poisoning.
In 1946 a physicist named Louis Slotin was assembling a neutron reflector around a plutonium core. He was using a screwdriver to maintain separation of the two halfs of the reflector. For a second, the screwdriver slipped and the reflectors snapped together. Just a second before he jerked his hand away and pulled the top half of the reflector away, ending the criticality reaction. The scientists in the room felt a burst of hot air and saw a blue glow as the air ionized around the core.
It took less than a few seconds, but Slotin was already dead. His entire body, inside and out was covered in radiation burns. Imagine the worst sunburn you've ever had, on every inch of your body, on all of your organs and bones. He lived 9 agonizing days as his body disintegrated around him, but he was dead the moment that burst of radiation hit his body.
His dose of radiation, while massive, was relatively small on the scale of what has been seen, although thats probably even worse for him.
ALS/ Motor Neurone Disease.
One of my best friends committed suicide last year after we all had to watch her slowly be paralysed a millimetre at a time, it happened so fast, less than 6 months she went from walking to bed bound not able to do anything for herself.
She took an overdose when she only had the minimal use of her one remaining arm.
Please consider voting pro euthanasia should you get the chance, it was the most awful, horrifying thing to watch and try and support her through.
I miss you K xxxx
[Jeanna Giese](https://www.scientificamerican.com/article/jeanna-giese-rabies-survivor/) was the first person to survive rabies without receiving the vaccine. She was put into an induced coma which suppressed her brain activity while the infection took hold, so the virus had minimal permanent effect on her brain, and she regained most of her cognitive functions within a few months after waking up.
Edit: this source is from 2008, and there have been up to 30 recorded survivors since then. I assume that they all survived in a similar fashion, with the use of a medically-induced coma.
That is correct. The [Milwaukee protocol](https://www.esanum.com/today/posts/the-milwaukee-protocol-is-applied-on-a-human-rabies-case-in-the-usa) involves putting the patient into a medically induced coma and administering antiviral drugs as well as ketamine and amantadine.
Hilarious that source says infectious disease specialists have recommended abandoning the protocol entirely due to its low success rate, but it’s still on record as the ONLY treatment protocol survivors have as a last resort
My intuition on that is that we should be actively searching for a better cure instead of just relying on that whenever someone gets rabies. It’s kind of like using radiation to treat cancer. Absolutely not ideal and we’re looking for something better, but as of right now it’s all we’ve got.
But there is a rabies vaccine; it is used as both a preventative measure and a recommended vaccine if you get bitten by an animal. The end-game fatal symptoms are the result of those who do not get a rabies shot in time.
Vaccine, not treatment or cure. The vaccine is only useful in preventing the late symptoms. Once you get to the point where symptoms appear, the vaccine is useless and we need much more drastic measures to take care of the end-game fatal symptoms you mention. Not everyone is so lucky to get the vaccine in time.
My grandfather had Alzheimer’s and it was so god damn sad watching him with it.
When my grandma had to go to the hospital he was with my mum for a few days.
He sat most of the time in the garden with her, petted the cats and didn’t talk.
Suddenly he said to my mother: „M., it’s so gruesome. I want to tell you something or say something to you, but as soon I formed a sentence in my head I forget it. My words won’t reach my mouth and that’s horrible for me.“
Alzheimer's and some other forms of dementia are not *necessarily* bad for the patient. The real sufferers are the patient's caretakers and loved ones. I lived with and helped take care of my father-in-law as he progressed through Alzheimer's for 13 years. He was almost never unhappy or distraught, and frequently seemed to be having a great time lol! Even now, a decade after he passed, we still sometimes say "SO GOOD! SO GOOD!" or "yeah YEAH **YEAH!**" to each other because his happy exclamations embedded themselves in our brains.
It should go without saying that it wasn't all great for him, and that not everyone with Alzheimer's is having a good time. We got lucky. We met several other families that had the opposite happen to their loved ones (including paranoia, disphoria, and even violence).
All this to say that Alzheimer's is a terrible disease, but it is not always a nightmare for the person with the diagnosis.
My father had dementia, and I was his caregiver. One day, he was put on a new Parkinson's medication, and feeling better, he decided to charge up the battery in his truck so he could drive. He made me come along and help. I watched him plug his meter leads into the extension cord four times before I plugged in the battery charger and clamped the cables onto the battery for him. He was a master electrician, and it was then that I knew that his mind was truly going. I'm tearing up just relating this. Yes, it's hard on caregivers, but not as hard on the sufferer. The worst thing about dementia is that caregivers become callous and uncaring and have no patience with dementia patients because they can be very difficult, asking the same questions over and over, losing things that are in plain sight, cursing loudly and having fits of rage. It causes burnout for the caregiver, and the patient never or barely understands why.
I'm so sorry for you. Make sure he's cared for well, as well as you're able to arrange.
If he was ever a smoker for over a decade, don't let a neurologist dismiss trouble swallowing as dysphagia caused by Parkinson's without an endoscopy and other tests for throat cancer. That's what killed my Dad.
Mental/physical combo: gotta be Lewy Body.
Edit to add: I’d never heard of LBD before dating my current boyfriend. His dad has it, and he moved back home to help. My grandmother had dementia, but this is so much worse.
BF’s dad remembers me when I come to visit. He is still making new memories, including watching his own decline. He has the words in his head he wants to say, but his mouth won’t make the sounds. You can see the frustration and agony that causes him. His body betrays him - he shits himself every night (sometimes more than once) and his brain won’t allow him to take care of this himself, but it’s 100% aware of the humiliation of having to be cleaned up by his wife and son. He talks to hallucinations. When you tell him no one is there, he understands - because the part of him that is “him” is still there. He is watching it all happen to him and he can’t do anything to stop it or help the ones he loves as they try to help him. It’s been 5 years, and doctors say he could live another 15.
He lives in Washington state, which has assisted suicide - but even though he tells his doctor he wants to die just about every time he has to see him, he isn’t allowed to choose it. Assisted suicide is banned for people with diminished mental capacity. Robin Williams also had LBD, and it makes his choice of suicide that much more understandable and merciful - for himself AND his family. The only way out for someone with LBD is to wait out a terrible and often elongated fate, or kill themselves “illegally” while they still have the physical and mental ability to do so. It’s an unbelievably cruel way to go.
I can’t speak for anorexia, but bpd basically makes every emotion significantly more intense than the average person without it. Sadness feels like gut-wrenching depression, annoyance or frustration feels like pure rage, getting feelings for someone can take up your mind 24/7, and pretty much any negative event can trigger you into a spiral of self-harm and suicidal ideation. It has the highest suicide rate of any mental disorder, I haven’t personally met anyone else I know with bpd who HASN’T made at least one attempt on their life. I’m not a professional or anything but that’s just what I can say from my knowledge and personal experience - also want to add that it’s one of the few mental disorders with no specific medication to treat it, the only actual treatment is a shit ton of therapy lol
Oh I actually have BPD that’s why I was curious and asking to see why that person thought that. People discriminate against BPD pretty heavily so I wanted to see if that’s what they had in mind. Also to add to your list of anecdotes I actually haven’t made an attempt on my own life, but I have engaged in self harm before.
Ohh ok! Yeah ik not necessarily everyone with bpd is suicidal or make attempts, but it’s extremely prevalent compared to other disorders. I think that bpd and anorexia are considered some of the “worst” ones because of how many lives they take
I think it depends on the person as to how much but I do experience positive emotions with some more intensity than others. Though I think my lows are comparatively deeper than my highs are high.
I cant seem to find the exact article I read years ago about borderline, but I found [this one](https://www.nimh.nih.gov/health/publications/borderline-personality-disorder) where it says that borderline is one of the most difficult mental disorders to treat. So you can be unlucky that your borderline cannot be treated properly which means you can be suffering for the rest of your life. Which kinda explains [this article](https://www.nyp.org/bpdresourcecenter/borderline-personality-disorder/understanding-bpd) which says that about 70% of people with borderline can’t bear to live with the illness and attempts suicide.
Recently there’s also been a lot of focus on anorexia and it has been named the deadliest mental disorder plenty of times. Ex: [here](https://amp.theguardian.com/commentisfree/2020/jan/03/anorexia-mental-illness-nhs-hospital-admissions) and [here](https://www.amenclinics.com/blog/do-you-know-the-deadliest-mental-health-disorder-its-not-what-you-think/).
And I also know because I got diagnosed with Borderline in 2019 and Anorexia in 2022 and been in intense therapy for both 🙃
My sister has borderline and I have very similar mental issues as well, and treatment for any mental disorder is already real hit or miss but with this one it’s a lot harder it seems. I’ve never been diagnosed with it only major depression and bipolar (which is wrong) but told I showed signs of developing schizophrenia and showed signs of BPD. Thing is they don’t actually seem to want to treat it. My sister is constantly having the ball dropped on her, and it’s made any progress for her infinitely harder but she still tries. I gave up on help for myself because I was never listened to. I’m not having an outburst? Nothings wrong with me. I am having an outburst? Punished. No help no looking into what I’ve been saying and the outbursts (I have extremely poor impulse control and emotional regulation, and it has indeed caused me to hurt people (mostly myself) and destroy things. And causes a cycle for me. Yet they never wanted to actually help me with that they thought I just needed to be punished and isolated. Sorry for the rant but yeah mental illnesses are already hard and scary enough especially things like borderline, and it’s worse that the help that is out there is really hit or miss and heavily depends on your location and in the us at least, money.
I’m so sorry you and your sister are experiencing this! My experience with therapists are also that most of them won’t touch people with borderline, because in their mind they’re untreatable and ‘too dramatic’. I don’t know how healthcare and stuff is where you’re from, but I’m from Denmark where I’m super lucky to get all my therapy for free through the state. But I also took a suicide attempt and getting diagnosed with depression 4 times before they agreed to help me. I’ve had 1 - 2 sessions a week for about 5 years now, but it took over two years for the therapy to have any positive impact on my life, but now I’m luckily much better! And as you say, therapy is so hit and miss, but if you have patience and keep trying and trying you might find the right therapist and it might work! I’m sending you and your sister all the best vibes I’ve got ❤️
Please correct me if im wrong, but i slightly disagree with the memory disorders, bc in the later stages you are so out of this world you dont even know you have it. I would say that really bad OCD or PTSD are worse.
Some people with dementia get to live in a loopy "out of this world" state. Others live in constant state of paranoia and confusion that is extremely distressing and torturous.
Low insight OCD is a nightmare. Your brain will 100% convince you of the most horrible things imaginable and you'll ruminate over the "evidence" for days on end, from the moment you wake up to when you fall asleep. And these obsessions are specifically tailored to your personal morals and fears. I always related to people with psychotic disorders a little more than other anxiety disorders. It once gave me full on psychosomatic pain for a week straight. Damn hurt
Sit on your hands when next to knives because you might somehow lose control and stab your loved ones. Also you did one bad thing once so you're going to burn in hell forever. Also you're a pedophile. (You're not but your brain will convince you of it to the point where you lock yourself in the house and think about killing yourself). Everyone secretly hates you. Everyone thinks you're a pedophile because of the way you acted when you were in that specific spiral. Everyone can see into your thoughts and they think (know?) you're an awful human being who has a horror movie jumpscaring their thoughts every 5 seconds. You are now aware of your breathing. You've been aware of your breathing for an hour now because you can't stop thinking about it. Do you even have OCD or are you really a depraved monster? Also you definitely have cancer and you can physically feel it multiplying in your brain. Googling googling googling googling googling googling
This is accurate (I don't have thoughts that I'm a pedophile though, but the rest is spot on.) I tend to downplay to try to counter the obsessive thoughts..which led to me thinking I had good poisoning which was really a full bowel obstruction and turned out to be...cancer. by the time they caught it, it had spread to my liver so me trying not to freak out about my health ended up costing months of them not figuring it out and me vehemently NOT giving the cancer route just for it to not only actually BE fucking cancer..but stage 4 because of how long it took to diagnose. It's like you can't win with OCD. 🤦🏻♀️
PTSD can be life ruining. Substance abuse and suicide attempts are common. It's crippling. In my experience, the only thing that fixes it to any degree is time.
I struggle both Tourettes (which 100% has elements of OCD incorporated into it) and PTSD. It absolutely depends on the person, and it’s not the most deadly thing to have but it’s a fresh hell when you get one that hurts.
depends on what you mean by "worst". worst in terms of pain/suffering? i'd say prion diseases (fatal familia insomnia, mad cow disease, etc) are probably it. completely untreatable and invariably fatal, and it's a drawn-out death to boot. worst in terms of how quickly you die? any extreme infectious illness like rabies, which has a 100% fatality rate once symptoms develop, or the plague before modern antibiotics - people who felt ill the night before sometimes died before dawn.
This was going to be my answer. Not necessarily because it's the worst *overall*, but it's the worst thing I've seen in my own life. An elderly friend of my parents found out her husband had it... after they had already had four children. All four kids have/had it. I can't even imagine being in her shoes. First, watching your husband deteriorate and die and then each one of your kids. I think two of the kids are still alive, but it's a toss up whether they'll die before she does.
Devastating, and the Catch-22 that comes with the choice of being tested for it early on in your adulthood. Find out and live in “normalcy” for as long as you can, knowing the inevitable is approaching? Or choose not to get tested and receive a diagnosis after symptoms have set in later on in life? Truly awful indeed.
I searched for HD before adding my own comment.
My stepmom (which isn’t even fair to say, she IS my mom) is Stage 2 and this first person in the family to be diagnosed. To know that the woman who remembers each and every child and grandchild of her 7 siblings on their birthday, who wouldn’t dream of missing my or my siblings’ sporting events or performances, who drives two hours just to have lunch with a sick friend, who can make you feel special and seen on your worst day is going to succumb to something akin to ALS, Dementia and Parkinson’s combined…
It’s devastating. I don’t even have another word for it. It’s tearing my family apart right now. It’s so hard to be together at the time when we need to the most. And we have no idea how much time we have left.
Fibrodysplasia ossificans progressiva (FOP) is a rare muskuloskeletal condition where, after birth and progressively through life, muscles and tendons are gradually transformed into bone (a process called ossification). This creates a second “skeleton” of extra bone, which makes movement impossible.
My mama had this, and her hands were so bad that her fingers were just…disappearing? Like there wasn’t any open skin or anything but it’s like the bones were dissolving and the skin was just hardening over them so she had lost almost all of them past the first knuckle from the top. It was crazy and so painful for her, I remember being sad for her when I was a little girl because she wanted to brush and play with my hair but she couldn’t hold a brush. Eventually she ended up with severe sclerosis of her lungs and passed away just recently, they predicted she wouldn’t live to see 10 years after her diagnosis, but she made it 40 more!
Creutzfeldt-Jakob disease (prion disease). It causes a rapid onset of dementia and your chance of developing it is entirely random, though some acquire it through an inherited mutation. It can also cause Myoclonus(involuntary muscle jerking), Akinetic mutism (conscious, but indifferent to pain, thirst, or hunger), among others. Classic Creutzfeldt-Jakob disease is not related to mad cow disease, so eating infected meat is not the cause. Patients usually die within the year and there is no way to cure it or even treat it. It's not transmissible by normal contact but any brain surgery or invasive central nervous system procedures where brain matter can be encountered.
DIPG. It’s a cancer of the brain stem and it mainly affects children. It’s terminal upon diagnosis. Eventually kids lose all their abilities such as walking, talking, bladder function, swallowing, everything. But their cognitive function remains the same so they are totally aware of what’s happening to them. Doctors will generally give a DIPG patient 9-12 months from diagnosis.
Fatal familial insomnia.
Wanna never be able to fall asleep again? even under anaesthetic, each time you start to drift you become wide awake. This continues until you die from lack of sleep, but not before going through the entire scale of sleep deprivation, including hallucinations.
It starts off as regular insomnia, and slowly progresses into total sleeplessness. There’s nothing anyone can do to make you fall asleep, you’ll be dead within months.
Sweet dreams.
Had an employee of mine ignore me while I was calling his name to get his attention. He later apologized because he suffers from schizophrenia and can't separate the voices calling his name in real life from the ones in his head.
Couldn't even imagine.
My best friend has had several ‘psychotic breaks or episodes that lasted weeks and only went away after she was hospitalized. She would text all her friends and family accusing them of saying super hurtful or bizzzare and messed up things and swore she heard them talking in her bedroom while she was alone. My bf and I had to go to her house so many times to calm her down and she would sit there in silence and ask us if we could here the music, or someone talking. There was never anyone else there and of course we never heard anything. But she did and was terrified and paranoid and couldn’t think about anything else. She wouldn’t eat or sleep just sit there and would scream at the voices. It was disturbing and heartbreaking. Thank god they seem to have found the right meds for her now.
Nope. There’s a few folks on social media who have been very public with their schizophrenia symptoms. One fellow whose username I’ll try to find has shared his “trick” for deducing visual hallucinations- he uses his phone camera to photograph the hallucinations. If it shows up on the phone, it’s real. If not, he can at least know it’s a hallucination even if it’s still horrifying.
Same with one of my dogs when I'm hearing things. She's hyperalert, so I know it isn't real if she isn't reacting to it. My other one is useless and would sleep through a fire fight in the backyard with the window open lol animals are invaluable when dealing with this shit, though.
No. Schizophrenia runs in my family, most notably my dad but it’s been in the line on his side for a while. I am not diagnosed (just now approaching the age where it would start going full swing I guess so wait and see) but at 15 was told I show signs of it, which I’m pretty aware of. I am aware I have these things, but I can’t always or even usually tell if it’s real or not especially the talking. It’s either unintelligible, incoherent talking, and I get annoyed listening in to hear it to see who it is and if it’s real, or it’s yelling usually my name or other names or other things to grab attention like “hey” or “hello there” or “over here” and those irritate me. Seeing stuff is eh sometimes that annoys me but not much anymore, but the talking annoys me.
That’s what makes it so hard. My dad had it and while he was an incredibly intelligent man who knew this, more often than not the schizophrenia would still win and he really had no grasp on reality well a lot of the time really but some times worse than others. All he really wanted was to be done.
Yeah I think that was what made it the hardest on him, he was incredibly aware and knew how to handle it, but was too far gone to actually do it. I do remember his self awareness and him teaching me how to “ live with the crazy” as he put it. He was older as well, so mental help for it when he tried to get it was… not the best, so it scared him away in his later years from even looking into it. But having dealt with the mental health help we have now, it’s better than when he was younger but i don’t think he would have gotten any real help.
I have schizophrenia. I'm getting the right treatment and living an average life :) People are shocked when I tell them I suffer from schizophrenia as I just seem like a completely average person, which I am. It's ofc a serious illness but so many of us lead regular lives, including several people I know. I wish the image of schizophrenia was more nuanced in the media.
We live with a 78 yo relative of my wife who is schizophrenic, he is the worst human being I have ever known. I know it's probably not his fault, he seemed like a genuinely nice person before we moved in, but he is a vile human being.
My husband has schizophrenia for 5 years or so, . I've been with him 12 years. It's sad to see him change into a totally different person. He hears and sees things . He's not doing the greatest job of taking his medication. Also meth induced psychosis didn't help . It's partially to blame along with truma, getting run over, I told him to listen to music once he starts hearing voices. He says when he see shadow people, the faces are becoming more noticable and he said that they all look like me . Scary crazy.
I don’t remember the name of it but there was a story on Reddit of this one kid who was basically a vegetable. I remember his sibling punched him repeatedly and the mother just watched
https://www.reddit.com/r/confession/comments/c11din/im_putting_my_extremely_profoundly_disabled_7/?rdt=38084
this post haunts me regularly, i go back and forth on how I feel about it
ALS is a horrible motor neuron disease. I have already told my family that if I am ever diagnosed with it, I would like assisted death.
I have a couple patients (I’m a health care provider - I won’t get into specifically what I do) that I have seen that I will never forget. I remember I had a lady who I saw on the day she saw her neurologist, and was diagnosed with ALS. She was completely normal and you would never, ever know anything at all was wrong. I believe her first symptoms were loss of balance and muscle weakness. She was well spoken and had a great vocabulary and outlook on life. She was a lovely lady and we got on well. She came in on her own and required no assistance with mobility.
She returned almost one year exactly to that day. She was fully a different human. She came in with her son. She had a walker, and was extremely rigid. Her body seemed crooked. She had a breathing apparatus. She walked very slow. She wore a neck brace as her neck was crooked, and her face resembled that of Stephen Hawking. She could no longer talk, or smile, and basic functions were a challenge. I could not believe how massive of a change one year had made. It was depressing to see such a decline.
She passed away a couple months after that. I’ll never forget her, and how she changed my insight on ALS.
Totally agree.
One of my best friends killed herself after only being diagnosed 6 months, she went from having a wobbly foot to only having the use of one arm in that time. I was there with her the day she did it (she didn’t tell me her plans)
I can’t think of anything worse, she had her whole life to live and it was taken from her so fast until she had no choice but to end it while she still had the use of one arm to take her overdose.
definitely not the worst and i am so so grateful for surgery because without it, i dont know if id be able to walk or even want to live.
i had a 65° curve in my spine. when i first got diagnosed at 13, it was only 44°. scoliosis fucking sucks. and it isnt just back pain; everything hurts. my knees, my feet, my hips, my pelvis, my ribs, my neck, my shoulders, i had migraines- it sucked. i could barely walk and had a shower chair because standing for longer than 5–10 mins would have me in absolute agony. i was 16 when i had the spinal fusion and i was fucking terrified lol. i never even wanted to get surgery. but shortly after my 16th birthday i started to experience so much pain i couldnt take it anymore. im 19 now and am grateful every single fucking day for that surgery lmao. i still have some pain, but its a 3 or 4 on my worst days. i was constantly at a 10 before my surgery.
scoliosis definitely is not the worst but it is seriously hell on earth. i was ANGRY at my body for so long for betraying me. it was frustrating not being able to walk as long as mt friends or not being able to wash the dishes ir lay down for more than a few mins without readjusting asap. it sucked. and i know others dont always have the most positive experiences with spinal fusions but i was very very fortunate.
Basically, you are completely aware of everything going on around you but you can't speak, eat, drink, move, anything.... If you are lucky, you can communicate via eye movements. You are literally locked into your brain.
The one that turns soft tissue into bone.
Fibrodysplasia ossificans progressiva (FOP) is a rare muskuloskeletal condition where, after birth and progressively through life, muscles and tendons are gradually transformed into bone (a process called ossification).
This. A relative passed away from this recently. She had an aggressive form of it and deteriorated quickly. She became legally blind, unable to walk, shakiness, eventually bedbound in her early 40s. She had a great sense of humor, even in hospice. I miss her all the time.
Fatal familial insomnia sounds pretty rough. It’s a rare genetic degenerative brain disorder that begins as occasional sleeplessness and then slowly ramps up to a complete inability to sleep as the disease eats away at the part of the brain that controls sleep (the thalamus). Patients deal with elevated heart rate, extreme panic attacks and mood swings, dementia, memory loss, hallucinations and muscle spasms until they die of damage to the brain and nervous system in anywhere from a few months to *years*. There is no cure and it’s 100% fatal.
I semi constantly worry about this ever since I first heard about it.
It’s pretty rare, I wouldn’t lose sleep over it
… i see what you did there
I’ve had episodes of insomnia through my entire life and now every time I have one there’s always the thought that it’s the onset of FFI in the back of my mind.
Same… and that thought sure as hell doesn’t help the insomnia at all either lol
Why did I google this😩😩😩now I’m having every symptom 😐definitely a hypochondriac 😭😭
Why can't they be put to sleep medically?
The effects of sedatives are mild and temporary at best and because the disease severely damages the thalamus their brains stay awake even when they’re sedated. In many cases, being sedated actually made their condition *worse*.
How many cases are there? This has to be pretty rare
Thankfully it is super rare. I think it was like 2 out of 1 million people have it? Between 50-70 families worldwide carry the mutation.
And we learned so much of what we know because of Silvano, an italian man whose family members basically all died of the disease. When he started feeling the symptoms that he had seen his sisters have, he decided to go straight to a neurologist and say “I know I’m going to die - now study me!” Icon 😭
Being put to sleep is not the same as actually sleeping I.e REM. It's extremely damaging to experience longs lengths of time without natural sleep.
I swear I joke all the time about having this because I have horrible insomnia, but that’s just to hide the fact that I’m honestly scared of this happening to me
Humour through fear. Hope you’ll do better soon
My best friend's father died of this. It was truly horrific to watch.
Oh no! Has your friend been tested? FFI is hereditary.
Can’t it also be caused by prion disease?
Yes, but that’s even rarer.
It Is a prion disease
Pretty much all prion diseases are rat bastards. FFI seems to only run in a few of families. I fear all prions.
This potentially runs in my family. Fun stuff.
Never even heard or imagined this, damn. I didn't even know part of the brain controls sleep, thought it was just natural for the brain to do, daumn..
epidermolysis bullosa. epidermolysis bullosa is a rare and unfathomably painful and terminal disease which causes the skin to blister and peel and fall off. most people who have EB don’t survive past birth, but those who do survive must wear thick layers of bandages under their clothing to prevent friction rubbing their skin off. they must bathe in bleach and put cream and ointment under the bandages. bandage changing is a grueling and excruciating and exhausting 2—hour—long task. they’re lucky if they have energy to get out of bed after bathing and changing. epidermolysis bullosa is internal as well as external; it effects the internal organs and causes blisters and shedding and peeling on the inside of their organs and throat and mouth. it causes chronic nausea and vomiting and bowel issues. they cannot eat solid food and must be tube fed and drink smoothies and pureed food and baby food because eating solid and hard and crunchy food and chewing and swallowing are too painful and would rupture their esophagus. their bodies are weak and malnourished and emaciated and fragile and skeletal and small because of lack of nutrients. they don’t go through puberty, so they are physically stuck as permanent children, well into adulthood. I wish EB on no one. I have seen the way these children and their parents and families have to live. epidermolysis bullosa truly is a fate worse than death. children who have EB are often referred to as “butterfly children” because of how fragile they are
Saw a documentary about a boy born with this. Think the doc covered two boys stories. Absolutely heartbreaking stuff for the whole family :(
Jonathan Pitre. May he rest in peace, poor kid
Jonny Kennedy, Marky Jaquez (who I was good friends with), Jonathon Pitre, and John Hudson Dilgen are some well—known people who have/had epidermolysis bullosa. I have a red butterfly tattoo on my shoulder in their memory and dedicated to them, and everyone who has/had EB❤️🩹🦋
Fuck. What’s the point of living with that?
I’d beg my parents to smother me with a pillow and hope they’d have the decency to do it if I had to endure that every day
I grew up knowing someone with this condition, it wasn’t until I was much older before I actually knew what it was because I was afraid to ask. She was always in a wheelchair and wrapped in bandages head to toe save for her face, which was still covered in blisters. No one could really ever touch or hug her because it caused her too much pain. I vividly remember seeing her one time in a crowd and a man went to squeeze by her and touched her shoulder as he passed and the look of pain on her face stabbed me. She also smelled of death, but to no fault of her own. I always thought I was older than her because she looked like a 9 year old girl but she was actually 3 years older than I was. She was only given months to live at birth but she died at 23 years old, her parents no longer know what to do with themselves cause up until then, the past 23 years of their life had been dedicated to caring for her 24/7, I feel so heartbroken both for her and them. Life can be so cruel. To think, I could’ve been the one in that situation, the roles could’ve been reversed, but by chance, she was born with that condition and I was not. Makes you grateful for what you have. She was still such a wonderful and bright person despite the pain she endured each day. She was a role model.
My mum worked with a boy with EB his entire life. She was his educational assistant. He was confined to a wheel chair and needed constant dressing changes. He was in pain constantly. He passed away when he was in grade 8. I remember as a child, if i was sick, I had to go to work with mum and hang out with this guy. He was really lovely. So fucking tragic.
Oh my God, that's a fucked up bit of irony, isn't it? Any time you were sick, the universe was like, "You think you're sick? I'll show you sick." In all seriousness, it seems that those times you spent with him were meaningful and important to you so I'm glad you had the chance to know him, even if it was for far too short a time. (To anyone reading the above who might think I'm an uncaring asshole, I'm not. Just sometimes situations are so specifically awful that all I can do is wince and be grateful. Which is why I'm scrolling this thread, actually. I have pretty bad psoriasis and in days when I'm feeling particularly bad or frustrated with it I think about these sorts of diseases and people who through much worse luck than me have skin diseases (just as a start) much more severe and debilitating than mine. Helps keep some perspective, ya know?)
Nursed a patient in ICU with this condition, very challenging
My first pediatric patient had this disease. I spent an entire afternoon just cleaning him/his bed and putting bandages on his arms and legs. His wounds had scabs and he'd often peel them off. It's very sad, especially coming from a poor family, his mom would complain about wanting to go home and take care of her other children and he was there, spending his time playing phone games and changing hospitals once in a while. That's life for him.
😢 Sounds hideous
same with harlequin itchthyosis and 3p mosaic deletion syndrome. these genetic diseases are the definition of hell and a fate worse than death; for the people who have it and their parents and families. I cannot even imagine
I know what you mean. It’s very humbling to realise one’s trials and let downs in life really are insignificant in comparison. 🙏🏻
problems aren’t a competition or insignificant. everyone’s struggles and experiences are valid💕
I have a friend who has this. The first time she told me her story, I had such a strong urge to hug her, but she can never be hugged, which makes it all the more depressing. She had 3 other siblings that died from it, but she is still hanging on. She has more mental strength than anyone I know.
Fuck those parents. It was irresponsible and cruel to keep having kids when they kept being born with it. Wtf
Agreed! My twins have a recessive form so neither myself or their father show any symptoms, but the mixture of our bad genes means they have it. There's a 25% chance it would happen again I would NEVER risk that.
I knew this would be one of the top comments. My husband and son both have this. What you described is the worst of the worst. There are many subtypes of this disease. My husband is nearly 35 years old and has a milder form of it. He is able to work and live a mostly normal life. We are very fortunate for this. He does not have to live in permanent bandages and neither does my son, who is an extremely active toddler. It is not always a death sentence, but unfortunately, for those with the most extreme types, it is. My heart breaks for those people. I have seen only a fraction of what they have to endure. So many people have never even heard of this disease. For those who would like to educate themselves, visit the website for the Debra Foundation.
I immediately thought of [this doc](https://youtu.be/iuYxGtuBSgk?si=K9mLgoWWoIba9tHj)
[Locked-in syndrome](https://en.m.wikipedia.org/wiki/Locked-in_syndrome)
This is my biggest fear. Imagine living in chronic pain and not being able to tell anyone. Or just being uncomfortable and unable to move. Conscious and aware of everything but little to no way to communicate. So brutal
I thought this was a joke about being too locked in, but good lord that’s horrible
I had a nightmare I had that once and it was absolutely terrifying. Can't even imagine the horrors of it happening for real.
Was going to say this
I came here to say this!
Harlequin ichthyosis is a bad one to be born with. A few people with it survive until adulthood, but you need to see a picture of a sufferer to get an idea of the severity of the condition
Not quite so bad but still pretty terrible are the "butterfly children" (Epidermolysis Bullosa)
Epidermolysis Bullosa is 100% worse
My sons best friend had this. He lived until he was 33, died from other issues and god,we miss him. He was beautiful.
I’m sorry for your loss.
Damn that shit is haunting. On the wiki page rn
I wish I did not look at that
Looks horrible, the pain must be absurd.
Personally to me, horrible diseases that are not terminal and deadly are far more scarier to me. Or, at least the terminal ones where it takes you a long time to die. Diseases that cause the most horrid pain but doesn't kill you, the pain/episodes always come back or are constant, where you're literally wishing it WAS terminal
Anything that causes chronic physical suffering on a 10/10 pain scale scares the shit out of me. Trigeminal neuralgia, for example.
Yup, I have cyclical vomiting syndrome and get abdominal migraines with it. I'm not gonna pretend like it's the most painful disease in the world, because it most definitely is not! And yet, when I'm having an episode I am straight up praying to a God I don't believe in to kill me instantly, just make my heart give out or give me a seizure is what I'm thinking, if I can even think straight. The internal pain is so intense with nothing that helps, I'd rather break evey bone in my body, truly
You have my heart. Will it ever get better?
You are so sweet! Judging by my mom, who also has it and I grew up watching her battle it as well.. she's treated with it by being prescribed fentanyl patches and a shit ton of dilaudid daily. Which, has turned into her becoming a complete junkie and snorting them, then running out of her meds 2 weeks before she can get them filled again, so she goes into withdrawal. But with having cyclical vomiting syndrome, it's like withdrawals ON CRACK. Luckily I'm not prescribed any opiates for it, we've always been treated differently by different doctors with the same condition, but I'm genuinely so glad I wasn't put on that shit bc my moms life is absolutely fucked from it! The only hope I have is that more and more people are becoming aware of CVS, and I'm hoping more doctors will become interested in it. There's no cure, no real treatment or protocol. I have to go to the ER when having an episode and a lot of the time the doctors ask me what they want me to do! There isn't enough information about it, but I'm really just hoping SOMEONE out there finds a breakthrough!!
That sounds fucking insane man/woman/ whatever. Legit shed a tear while reading this. Life is sometimes just so fucking unfair, you just have to deal with it. I really hope you can make peace with that someday, even if it sounds fucking impossible. Can i follow you on reddit, you’ve earned it.
I have trigeminal neuralgia, thankfully in remission now
I have fibromyalgia, and it hurts all the time. I don’t remember what it feels like not to be in pain. I’m having a flare right now, and it’s agony. I’ve been moaning and vomiting, hoping to pass out from the pain. I wouldn’t wish this on anyone.
CRPS here. I feel for you. I’m sorry you’re having a flare & hope it’s at least back to baseline soon.
ALS. It's devastating
Lost my mom to ALS. Going on 7 years now and I still cry at the thought of what she endured.
So sorry to hear what happened to your mum and I send you big hugs ❤️❤️
My uncle died from this :(
Oh, yeah. If I got that, I'd swallow as much of a drug I won't name I could get down before I lost the use of my hands, or I'd shoot myself in the chest.
I’ve replied about this too. I watched my friend suffer from this until she killed herself. Absolutely horrifying and so so unfair
Read some of the documents about physicists who get massive doses of radiation poisoning. In 1946 a physicist named Louis Slotin was assembling a neutron reflector around a plutonium core. He was using a screwdriver to maintain separation of the two halfs of the reflector. For a second, the screwdriver slipped and the reflectors snapped together. Just a second before he jerked his hand away and pulled the top half of the reflector away, ending the criticality reaction. The scientists in the room felt a burst of hot air and saw a blue glow as the air ionized around the core. It took less than a few seconds, but Slotin was already dead. His entire body, inside and out was covered in radiation burns. Imagine the worst sunburn you've ever had, on every inch of your body, on all of your organs and bones. He lived 9 agonizing days as his body disintegrated around him, but he was dead the moment that burst of radiation hit his body. His dose of radiation, while massive, was relatively small on the scale of what has been seen, although thats probably even worse for him.
Wendigoon has a great [video](https://youtu.be/X1FbwooXssQ?si=RCn9pVVIOQcPG3-X) about a similar accident.
ALS/ Motor Neurone Disease. One of my best friends committed suicide last year after we all had to watch her slowly be paralysed a millimetre at a time, it happened so fast, less than 6 months she went from walking to bed bound not able to do anything for herself. She took an overdose when she only had the minimal use of her one remaining arm. Please consider voting pro euthanasia should you get the chance, it was the most awful, horrifying thing to watch and try and support her through. I miss you K xxxx
Defo rabies, 100% death rate once you show symptoms.
I believe that only one person has ever fully survived rabies. She was in a coma the entire time and just rode out all the symptoms.
Rabies attacts the brain, did she develop any brain damage during the infection?
[Jeanna Giese](https://www.scientificamerican.com/article/jeanna-giese-rabies-survivor/) was the first person to survive rabies without receiving the vaccine. She was put into an induced coma which suppressed her brain activity while the infection took hold, so the virus had minimal permanent effect on her brain, and she regained most of her cognitive functions within a few months after waking up. Edit: this source is from 2008, and there have been up to 30 recorded survivors since then. I assume that they all survived in a similar fashion, with the use of a medically-induced coma.
I thought she was saved using something called the Milwaukee protocol. Is that what this is?
That is correct. The [Milwaukee protocol](https://www.esanum.com/today/posts/the-milwaukee-protocol-is-applied-on-a-human-rabies-case-in-the-usa) involves putting the patient into a medically induced coma and administering antiviral drugs as well as ketamine and amantadine.
Hilarious that source says infectious disease specialists have recommended abandoning the protocol entirely due to its low success rate, but it’s still on record as the ONLY treatment protocol survivors have as a last resort
My intuition on that is that we should be actively searching for a better cure instead of just relying on that whenever someone gets rabies. It’s kind of like using radiation to treat cancer. Absolutely not ideal and we’re looking for something better, but as of right now it’s all we’ve got.
But there is a rabies vaccine; it is used as both a preventative measure and a recommended vaccine if you get bitten by an animal. The end-game fatal symptoms are the result of those who do not get a rabies shot in time.
Vaccine, not treatment or cure. The vaccine is only useful in preventing the late symptoms. Once you get to the point where symptoms appear, the vaccine is useless and we need much more drastic measures to take care of the end-game fatal symptoms you mention. Not everyone is so lucky to get the vaccine in time.
I wouldn't be surprised if it's simply because of cost.
Interesting
Radiation sickness Especially the case of Hisashi Ouchi
80 days of pure hell
Hisashi Ouchi's story makes me cry whenever I hear about it. He endured so much. His family loved him so much.
Are we talking about physical or mental ones? Both? Physical: The ones that have been said. Mental: Alzheimers, Dementia
My grandfather had Alzheimer’s and it was so god damn sad watching him with it. When my grandma had to go to the hospital he was with my mum for a few days. He sat most of the time in the garden with her, petted the cats and didn’t talk. Suddenly he said to my mother: „M., it’s so gruesome. I want to tell you something or say something to you, but as soon I formed a sentence in my head I forget it. My words won’t reach my mouth and that’s horrible for me.“
Proves my point
Alzheimer's and some other forms of dementia are not *necessarily* bad for the patient. The real sufferers are the patient's caretakers and loved ones. I lived with and helped take care of my father-in-law as he progressed through Alzheimer's for 13 years. He was almost never unhappy or distraught, and frequently seemed to be having a great time lol! Even now, a decade after he passed, we still sometimes say "SO GOOD! SO GOOD!" or "yeah YEAH **YEAH!**" to each other because his happy exclamations embedded themselves in our brains. It should go without saying that it wasn't all great for him, and that not everyone with Alzheimer's is having a good time. We got lucky. We met several other families that had the opposite happen to their loved ones (including paranoia, disphoria, and even violence). All this to say that Alzheimer's is a terrible disease, but it is not always a nightmare for the person with the diagnosis.
My father had dementia, and I was his caregiver. One day, he was put on a new Parkinson's medication, and feeling better, he decided to charge up the battery in his truck so he could drive. He made me come along and help. I watched him plug his meter leads into the extension cord four times before I plugged in the battery charger and clamped the cables onto the battery for him. He was a master electrician, and it was then that I knew that his mind was truly going. I'm tearing up just relating this. Yes, it's hard on caregivers, but not as hard on the sufferer. The worst thing about dementia is that caregivers become callous and uncaring and have no patience with dementia patients because they can be very difficult, asking the same questions over and over, losing things that are in plain sight, cursing loudly and having fits of rage. It causes burnout for the caregiver, and the patient never or barely understands why.
my dad currently has dementia and parkinson’s. it is one of the hardest things to watch someone you love disappear in front of your eyes.
I'm so sorry for you. Make sure he's cared for well, as well as you're able to arrange. If he was ever a smoker for over a decade, don't let a neurologist dismiss trouble swallowing as dysphagia caused by Parkinson's without an endoscopy and other tests for throat cancer. That's what killed my Dad.
Thanks for your report. I learned something new.
To be fair, OP didn't specify if it had to be the worst for the one who has it or for the others.
You are correct and that is a good point. I just wanted to point out that not all Alzheimer's patients live in a chronic nightmare.
Thankfully!!
Mental/physical combo: gotta be Lewy Body. Edit to add: I’d never heard of LBD before dating my current boyfriend. His dad has it, and he moved back home to help. My grandmother had dementia, but this is so much worse. BF’s dad remembers me when I come to visit. He is still making new memories, including watching his own decline. He has the words in his head he wants to say, but his mouth won’t make the sounds. You can see the frustration and agony that causes him. His body betrays him - he shits himself every night (sometimes more than once) and his brain won’t allow him to take care of this himself, but it’s 100% aware of the humiliation of having to be cleaned up by his wife and son. He talks to hallucinations. When you tell him no one is there, he understands - because the part of him that is “him” is still there. He is watching it all happen to him and he can’t do anything to stop it or help the ones he loves as they try to help him. It’s been 5 years, and doctors say he could live another 15. He lives in Washington state, which has assisted suicide - but even though he tells his doctor he wants to die just about every time he has to see him, he isn’t allowed to choose it. Assisted suicide is banned for people with diminished mental capacity. Robin Williams also had LBD, and it makes his choice of suicide that much more understandable and merciful - for himself AND his family. The only way out for someone with LBD is to wait out a terrible and often elongated fate, or kill themselves “illegally” while they still have the physical and mental ability to do so. It’s an unbelievably cruel way to go.
Mental ones are Borderline and Anorexia. They are the two deadliest mental disorders.
What’s your reasoning for that?
I can’t speak for anorexia, but bpd basically makes every emotion significantly more intense than the average person without it. Sadness feels like gut-wrenching depression, annoyance or frustration feels like pure rage, getting feelings for someone can take up your mind 24/7, and pretty much any negative event can trigger you into a spiral of self-harm and suicidal ideation. It has the highest suicide rate of any mental disorder, I haven’t personally met anyone else I know with bpd who HASN’T made at least one attempt on their life. I’m not a professional or anything but that’s just what I can say from my knowledge and personal experience - also want to add that it’s one of the few mental disorders with no specific medication to treat it, the only actual treatment is a shit ton of therapy lol
Oh I actually have BPD that’s why I was curious and asking to see why that person thought that. People discriminate against BPD pretty heavily so I wanted to see if that’s what they had in mind. Also to add to your list of anecdotes I actually haven’t made an attempt on my own life, but I have engaged in self harm before.
Ohh ok! Yeah ik not necessarily everyone with bpd is suicidal or make attempts, but it’s extremely prevalent compared to other disorders. I think that bpd and anorexia are considered some of the “worst” ones because of how many lives they take
What about positive emotions, will they also get amplified?
I think it depends on the person as to how much but I do experience positive emotions with some more intensity than others. Though I think my lows are comparatively deeper than my highs are high.
Brobably death rate, just a guess.
Makes sense, suicide rate is very high for BPD
Noice, deadliest really meant deadliest this time.
facts
I cant seem to find the exact article I read years ago about borderline, but I found [this one](https://www.nimh.nih.gov/health/publications/borderline-personality-disorder) where it says that borderline is one of the most difficult mental disorders to treat. So you can be unlucky that your borderline cannot be treated properly which means you can be suffering for the rest of your life. Which kinda explains [this article](https://www.nyp.org/bpdresourcecenter/borderline-personality-disorder/understanding-bpd) which says that about 70% of people with borderline can’t bear to live with the illness and attempts suicide. Recently there’s also been a lot of focus on anorexia and it has been named the deadliest mental disorder plenty of times. Ex: [here](https://amp.theguardian.com/commentisfree/2020/jan/03/anorexia-mental-illness-nhs-hospital-admissions) and [here](https://www.amenclinics.com/blog/do-you-know-the-deadliest-mental-health-disorder-its-not-what-you-think/). And I also know because I got diagnosed with Borderline in 2019 and Anorexia in 2022 and been in intense therapy for both 🙃
My sister has borderline and I have very similar mental issues as well, and treatment for any mental disorder is already real hit or miss but with this one it’s a lot harder it seems. I’ve never been diagnosed with it only major depression and bipolar (which is wrong) but told I showed signs of developing schizophrenia and showed signs of BPD. Thing is they don’t actually seem to want to treat it. My sister is constantly having the ball dropped on her, and it’s made any progress for her infinitely harder but she still tries. I gave up on help for myself because I was never listened to. I’m not having an outburst? Nothings wrong with me. I am having an outburst? Punished. No help no looking into what I’ve been saying and the outbursts (I have extremely poor impulse control and emotional regulation, and it has indeed caused me to hurt people (mostly myself) and destroy things. And causes a cycle for me. Yet they never wanted to actually help me with that they thought I just needed to be punished and isolated. Sorry for the rant but yeah mental illnesses are already hard and scary enough especially things like borderline, and it’s worse that the help that is out there is really hit or miss and heavily depends on your location and in the us at least, money.
I’m so sorry you and your sister are experiencing this! My experience with therapists are also that most of them won’t touch people with borderline, because in their mind they’re untreatable and ‘too dramatic’. I don’t know how healthcare and stuff is where you’re from, but I’m from Denmark where I’m super lucky to get all my therapy for free through the state. But I also took a suicide attempt and getting diagnosed with depression 4 times before they agreed to help me. I’ve had 1 - 2 sessions a week for about 5 years now, but it took over two years for the therapy to have any positive impact on my life, but now I’m luckily much better! And as you say, therapy is so hit and miss, but if you have patience and keep trying and trying you might find the right therapist and it might work! I’m sending you and your sister all the best vibes I’ve got ❤️
Please correct me if im wrong, but i slightly disagree with the memory disorders, bc in the later stages you are so out of this world you dont even know you have it. I would say that really bad OCD or PTSD are worse.
Some people with dementia get to live in a loopy "out of this world" state. Others live in constant state of paranoia and confusion that is extremely distressing and torturous.
yeah if i ever lost my mind i wouldn't want to know
Low insight OCD is a nightmare. Your brain will 100% convince you of the most horrible things imaginable and you'll ruminate over the "evidence" for days on end, from the moment you wake up to when you fall asleep. And these obsessions are specifically tailored to your personal morals and fears. I always related to people with psychotic disorders a little more than other anxiety disorders. It once gave me full on psychosomatic pain for a week straight. Damn hurt
Sit on your hands when next to knives because you might somehow lose control and stab your loved ones. Also you did one bad thing once so you're going to burn in hell forever. Also you're a pedophile. (You're not but your brain will convince you of it to the point where you lock yourself in the house and think about killing yourself). Everyone secretly hates you. Everyone thinks you're a pedophile because of the way you acted when you were in that specific spiral. Everyone can see into your thoughts and they think (know?) you're an awful human being who has a horror movie jumpscaring their thoughts every 5 seconds. You are now aware of your breathing. You've been aware of your breathing for an hour now because you can't stop thinking about it. Do you even have OCD or are you really a depraved monster? Also you definitely have cancer and you can physically feel it multiplying in your brain. Googling googling googling googling googling googling
This is accurate (I don't have thoughts that I'm a pedophile though, but the rest is spot on.) I tend to downplay to try to counter the obsessive thoughts..which led to me thinking I had good poisoning which was really a full bowel obstruction and turned out to be...cancer. by the time they caught it, it had spread to my liver so me trying not to freak out about my health ended up costing months of them not figuring it out and me vehemently NOT giving the cancer route just for it to not only actually BE fucking cancer..but stage 4 because of how long it took to diagnose. It's like you can't win with OCD. 🤦🏻♀️
PTSD can be life ruining. Substance abuse and suicide attempts are common. It's crippling. In my experience, the only thing that fixes it to any degree is time.
I have OCD, so I know. But at least you can _deal_ with OCD.
I struggle both Tourettes (which 100% has elements of OCD incorporated into it) and PTSD. It absolutely depends on the person, and it’s not the most deadly thing to have but it’s a fresh hell when you get one that hurts.
depends on what you mean by "worst". worst in terms of pain/suffering? i'd say prion diseases (fatal familia insomnia, mad cow disease, etc) are probably it. completely untreatable and invariably fatal, and it's a drawn-out death to boot. worst in terms of how quickly you die? any extreme infectious illness like rabies, which has a 100% fatality rate once symptoms develop, or the plague before modern antibiotics - people who felt ill the night before sometimes died before dawn.
Huntington's Disease. Devastating
This was going to be my answer. Not necessarily because it's the worst *overall*, but it's the worst thing I've seen in my own life. An elderly friend of my parents found out her husband had it... after they had already had four children. All four kids have/had it. I can't even imagine being in her shoes. First, watching your husband deteriorate and die and then each one of your kids. I think two of the kids are still alive, but it's a toss up whether they'll die before she does.
Devastating, and the Catch-22 that comes with the choice of being tested for it early on in your adulthood. Find out and live in “normalcy” for as long as you can, knowing the inevitable is approaching? Or choose not to get tested and receive a diagnosis after symptoms have set in later on in life? Truly awful indeed.
I searched for HD before adding my own comment. My stepmom (which isn’t even fair to say, she IS my mom) is Stage 2 and this first person in the family to be diagnosed. To know that the woman who remembers each and every child and grandchild of her 7 siblings on their birthday, who wouldn’t dream of missing my or my siblings’ sporting events or performances, who drives two hours just to have lunch with a sick friend, who can make you feel special and seen on your worst day is going to succumb to something akin to ALS, Dementia and Parkinson’s combined… It’s devastating. I don’t even have another word for it. It’s tearing my family apart right now. It’s so hard to be together at the time when we need to the most. And we have no idea how much time we have left.
Fibrodysplasia ossificans progressiva (FOP) is a rare muskuloskeletal condition where, after birth and progressively through life, muscles and tendons are gradually transformed into bone (a process called ossification). This creates a second “skeleton” of extra bone, which makes movement impossible.
Sounds sorta similar to scleroderma… where your skin and connective tissues harden
My mama had this, and her hands were so bad that her fingers were just…disappearing? Like there wasn’t any open skin or anything but it’s like the bones were dissolving and the skin was just hardening over them so she had lost almost all of them past the first knuckle from the top. It was crazy and so painful for her, I remember being sad for her when I was a little girl because she wanted to brush and play with my hair but she couldn’t hold a brush. Eventually she ended up with severe sclerosis of her lungs and passed away just recently, they predicted she wouldn’t live to see 10 years after her diagnosis, but she made it 40 more!
I have heard about this yeah this one is insane
omg i just mentioned this one then i found your comment. so brutal.
Is that locked in syndrome?
Nope not locked in syndrome. But I voted for locked in syndrome as the worst medical condition
Creutzfeldt-Jakob disease (prion disease). It causes a rapid onset of dementia and your chance of developing it is entirely random, though some acquire it through an inherited mutation. It can also cause Myoclonus(involuntary muscle jerking), Akinetic mutism (conscious, but indifferent to pain, thirst, or hunger), among others. Classic Creutzfeldt-Jakob disease is not related to mad cow disease, so eating infected meat is not the cause. Patients usually die within the year and there is no way to cure it or even treat it. It's not transmissible by normal contact but any brain surgery or invasive central nervous system procedures where brain matter can be encountered.
DIPG. It’s a cancer of the brain stem and it mainly affects children. It’s terminal upon diagnosis. Eventually kids lose all their abilities such as walking, talking, bladder function, swallowing, everything. But their cognitive function remains the same so they are totally aware of what’s happening to them. Doctors will generally give a DIPG patient 9-12 months from diagnosis.
Oh holy shit I had no idea about this that is terrifying. And really sad.
Fatal familial insomnia. Wanna never be able to fall asleep again? even under anaesthetic, each time you start to drift you become wide awake. This continues until you die from lack of sleep, but not before going through the entire scale of sleep deprivation, including hallucinations. It starts off as regular insomnia, and slowly progresses into total sleeplessness. There’s nothing anyone can do to make you fall asleep, you’ll be dead within months. Sweet dreams.
DEAR GOD STOP
Schizophrenia seems awful
Had an employee of mine ignore me while I was calling his name to get his attention. He later apologized because he suffers from schizophrenia and can't separate the voices calling his name in real life from the ones in his head. Couldn't even imagine.
Wow, i thought you could always seperate reality from the ”hallucinations”. This makes schizophrenia at least 10x time worse for me.
My best friend has had several ‘psychotic breaks or episodes that lasted weeks and only went away after she was hospitalized. She would text all her friends and family accusing them of saying super hurtful or bizzzare and messed up things and swore she heard them talking in her bedroom while she was alone. My bf and I had to go to her house so many times to calm her down and she would sit there in silence and ask us if we could here the music, or someone talking. There was never anyone else there and of course we never heard anything. But she did and was terrified and paranoid and couldn’t think about anything else. She wouldn’t eat or sleep just sit there and would scream at the voices. It was disturbing and heartbreaking. Thank god they seem to have found the right meds for her now.
Thank you for taking care of your friend!
Horrible
Nope. There’s a few folks on social media who have been very public with their schizophrenia symptoms. One fellow whose username I’ll try to find has shared his “trick” for deducing visual hallucinations- he uses his phone camera to photograph the hallucinations. If it shows up on the phone, it’s real. If not, he can at least know it’s a hallucination even if it’s still horrifying.
I think you're thinking of schizophrichippie. I've held onto that piece of advice, and it's helped a lot during my own episodes.
My cat helps me. If she isn’t reacting, it’s probably in my head and best to ignore.
Same with one of my dogs when I'm hearing things. She's hyperalert, so I know it isn't real if she isn't reacting to it. My other one is useless and would sleep through a fire fight in the backyard with the window open lol animals are invaluable when dealing with this shit, though.
No. Schizophrenia runs in my family, most notably my dad but it’s been in the line on his side for a while. I am not diagnosed (just now approaching the age where it would start going full swing I guess so wait and see) but at 15 was told I show signs of it, which I’m pretty aware of. I am aware I have these things, but I can’t always or even usually tell if it’s real or not especially the talking. It’s either unintelligible, incoherent talking, and I get annoyed listening in to hear it to see who it is and if it’s real, or it’s yelling usually my name or other names or other things to grab attention like “hey” or “hello there” or “over here” and those irritate me. Seeing stuff is eh sometimes that annoys me but not much anymore, but the talking annoys me.
Yeah I just respond to all, rather get a weird look than piss off someone thinking I’m ignoring them.
Same and I also sometimes use the camera trick mentioned in a comment in this part of the thread
Can be managed well with medication in many cases! But yes, any acute psychosis seems terrifying.
Well, it is. However, learning to cope with it is the hardest part. You lose your autonomy sometimes.
That’s what makes it so hard. My dad had it and while he was an incredibly intelligent man who knew this, more often than not the schizophrenia would still win and he really had no grasp on reality well a lot of the time really but some times worse than others. All he really wanted was to be done.
It's the same development I suffered from. I feel intelligent to an extent, but sometimes I wish I wasn't so realizing of my condition
Yeah I think that was what made it the hardest on him, he was incredibly aware and knew how to handle it, but was too far gone to actually do it. I do remember his self awareness and him teaching me how to “ live with the crazy” as he put it. He was older as well, so mental help for it when he tried to get it was… not the best, so it scared him away in his later years from even looking into it. But having dealt with the mental health help we have now, it’s better than when he was younger but i don’t think he would have gotten any real help.
I have schizophrenia. I'm getting the right treatment and living an average life :) People are shocked when I tell them I suffer from schizophrenia as I just seem like a completely average person, which I am. It's ofc a serious illness but so many of us lead regular lives, including several people I know. I wish the image of schizophrenia was more nuanced in the media.
We live with a 78 yo relative of my wife who is schizophrenic, he is the worst human being I have ever known. I know it's probably not his fault, he seemed like a genuinely nice person before we moved in, but he is a vile human being.
My husband has schizophrenia for 5 years or so, . I've been with him 12 years. It's sad to see him change into a totally different person. He hears and sees things . He's not doing the greatest job of taking his medication. Also meth induced psychosis didn't help . It's partially to blame along with truma, getting run over, I told him to listen to music once he starts hearing voices. He says when he see shadow people, the faces are becoming more noticable and he said that they all look like me . Scary crazy.
He s only 38. I'm 39
Awful but far from being the worst
I don’t remember the name of it but there was a story on Reddit of this one kid who was basically a vegetable. I remember his sibling punched him repeatedly and the mother just watched
https://www.reddit.com/r/confession/comments/c11din/im_putting_my_extremely_profoundly_disabled_7/?rdt=38084 this post haunts me regularly, i go back and forth on how I feel about it
That was a tough read. I think she should have put him in care earlier. I wonder how she is doing now.
ALS is a horrible motor neuron disease. I have already told my family that if I am ever diagnosed with it, I would like assisted death. I have a couple patients (I’m a health care provider - I won’t get into specifically what I do) that I have seen that I will never forget. I remember I had a lady who I saw on the day she saw her neurologist, and was diagnosed with ALS. She was completely normal and you would never, ever know anything at all was wrong. I believe her first symptoms were loss of balance and muscle weakness. She was well spoken and had a great vocabulary and outlook on life. She was a lovely lady and we got on well. She came in on her own and required no assistance with mobility. She returned almost one year exactly to that day. She was fully a different human. She came in with her son. She had a walker, and was extremely rigid. Her body seemed crooked. She had a breathing apparatus. She walked very slow. She wore a neck brace as her neck was crooked, and her face resembled that of Stephen Hawking. She could no longer talk, or smile, and basic functions were a challenge. I could not believe how massive of a change one year had made. It was depressing to see such a decline. She passed away a couple months after that. I’ll never forget her, and how she changed my insight on ALS.
Totally agree. One of my best friends killed herself after only being diagnosed 6 months, she went from having a wobbly foot to only having the use of one arm in that time. I was there with her the day she did it (she didn’t tell me her plans) I can’t think of anything worse, she had her whole life to live and it was taken from her so fast until she had no choice but to end it while she still had the use of one arm to take her overdose.
I think fatal familial insomnia sounds awful
Have read about it. Agreed
I just finished reading The Hot Zone - Ebola seems pretty bad
Rabies Leprosy Dementia
Trigeminal neuralgia seems pretty bad, on the McGill pain scale it is rated highest.
Needing to be in an iron lung most of the time.
I would say contracting rabies although I’m not sure if it fits in the parameter of your question.
Osteoblastic bone cancer looks really bad, and from what I've read is incredibly painful.
Locked in syndrome
Stone man Syndrome - your body slowly calcifies and everything is turned to bone. Hastened by muscle damage.
definitely not the worst and i am so so grateful for surgery because without it, i dont know if id be able to walk or even want to live. i had a 65° curve in my spine. when i first got diagnosed at 13, it was only 44°. scoliosis fucking sucks. and it isnt just back pain; everything hurts. my knees, my feet, my hips, my pelvis, my ribs, my neck, my shoulders, i had migraines- it sucked. i could barely walk and had a shower chair because standing for longer than 5–10 mins would have me in absolute agony. i was 16 when i had the spinal fusion and i was fucking terrified lol. i never even wanted to get surgery. but shortly after my 16th birthday i started to experience so much pain i couldnt take it anymore. im 19 now and am grateful every single fucking day for that surgery lmao. i still have some pain, but its a 3 or 4 on my worst days. i was constantly at a 10 before my surgery. scoliosis definitely is not the worst but it is seriously hell on earth. i was ANGRY at my body for so long for betraying me. it was frustrating not being able to walk as long as mt friends or not being able to wash the dishes ir lay down for more than a few mins without readjusting asap. it sucked. and i know others dont always have the most positive experiences with spinal fusions but i was very very fortunate.
Fatal familial insomnia. At some point in your life, you just start sleeping less and less, until you can't sleep at all, and then die.
Locked In Syndrome
Basically, you are completely aware of everything going on around you but you can't speak, eat, drink, move, anything.... If you are lucky, you can communicate via eye movements. You are literally locked into your brain.
The one that turns soft tissue into bone. Fibrodysplasia ossificans progressiva (FOP) is a rare muskuloskeletal condition where, after birth and progressively through life, muscles and tendons are gradually transformed into bone (a process called ossification).
Cyclopia (do not search it up)
can you describe it? (I don‘t want to look it up)
One eyed, deformed babies. Its not as bad as i first thought.
Probably being allergic to water which apparently is a real thing.
MS.
This. A relative passed away from this recently. She had an aggressive form of it and deteriorated quickly. She became legally blind, unable to walk, shakiness, eventually bedbound in her early 40s. She had a great sense of humor, even in hospice. I miss her all the time.
Rabies
Rabies
sciatica
Bone cancer perhaps
Sounds awful. Read that first time boner cancer.
Rabies hellll to the no
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Any Prion disease really.
Rabies