I have a couple.
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Celiac disease. Most people, if they’ve heard of it, believe it’s a physical intolerance to gluten/wheat similar to lactose intolerance. Or, many people think it’s semi-imaginary gluten intolerance and some insist it doesn’t even exist. In fact it is a serious autoimmune disease that affects about every system in your body, and can produce dozens of symptoms ranging from complete debilitation to mild discomfort. Hair loss, dry skin, chronic diarrhea mixed with constipation, anxiety, memory loss, brain fog, insomnia, extreme fatigue, slow growth in children, anemia, osteoporosis, and even more… plus can lead to other autoimmune diseases. Nobody knows what causes Celiac as 30x as many people have the genes as ever develop it, and it can start at any time in life.
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type 1 diabetes. Most people have heard diabetes as the 24x as common Type 2 Diabetes, and believe diabetes in general affects overweight people and has something to do with eating “too much sugar”. That’s not quite right for type 2 but it also has nothing at all to do with type 1. T1 used to be called “juvenile diabetes” because it affected people from ages 0-25. However, they changed the name because they found adults could get it, which is what happened to me (called LADA). Type 1 and Type 2 are practically opposite conditions that both affect your glucose regulation and have overlapping effects. Type 2 is where your body puts out so much insulin, it stops responding to insulin, called insulin resistance. It can be reversed to some extent by diet and exercise. Type 1 is an autoimmune condition where your body destroy the cells that produce insulin, leading to no insulin in the body at all, which can quickly be fatal. Unlike type 2, there’s no lifestyle or diet correlation, only genetics.
One I would add to this (though it has never affected me) is diabetes insipidus.
Biggest misconception about this (and doctors don’t help here at all) is it must be another name for type one or type two diabetes because we always hear “there are two types”. Nope, it’s totally sovereign.
Another misconception is it’s one of those rare things. Literally anyone can develop it as a result of a side effect of super common medications such as lithium and a few vaccines that are fortunately no longer in circulation.
And a third is it’s not serious. It’s incredibly serious. Imagine all those misconceptions you hear about diabetes and sugar and apply it to water instead of sugar. Scares me to think about it.
Good note, that’s another one that’s totally different. Diabetes was originally named for a large flow of urine, which is the connection I guess, but insipidus doesn’t have the connection to high blood glucose. Type 1 and type 2 are Diabetes Mellitus, named for the urine smelling sweet (like honey, ooh!) from the sugar expelled in it. The kind I have is also called Type 1.5, but it’s more like type 1. There’s also an even more rare kind, similar to type 1, called MODY, which is purely genetic.
Sounds like the moral of the story here is they really need a new naming system for all of this.
Yes, the autoimmune pancreatic deficiency ones should be split off from type 2. Insipidus should just be called something totally different. That’s a recurring conversation on T1 discussion groups. People ask things like “were you really fat as a kid? Did you like, just eat so much sugar you got diabetes?” and no, I was 5’11" and 130 lbs when I was diagnosed.
Have
Definitely agreed on people not knowing what diabetes insipidus is. If my wife did not have medication for it, she would likely dehydrate and die unless she had a constant source of water.
I find that the entire category of auto-immune diseases are a thing most people fail to really “get”. Especially if it is even moderately uncommon.
My brother was recently diagnosed with type 1 at almost 50.
We are having a very quick crash course in it.
Yeah, I was about 40 and I had no idea what was happening. I had just been getting better after being finally diagnosed with Celiac. I was really sick and even saw one of the major hospitals in the country for 2 weeks, they didn’t figure out what was going on… then I finally had to go to the ER when I was, they said, 1-2 days away from dying or going into a coma. Definitely caused some problems in between then.
I haven’t seen much T1 action on Lemmy yet, but the communities on reddit are quite good.
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I’ve OCD, if that counts (not self diagnosed. I’ve a proper diagnosis from a psychologist and was on prescripted meds for a long time).
Most people think you’re just supposed to wash hands too often, or arrange things symmetrically, or just be a cleanliness and symmetry freak in general. But that’s far from true.
OCD is of many types. The one where you are a cleanliness freak is also valid if you’ve it to an extreme level. Unfortunately, I don’t have that. I’ve the less popular one with random “what if” intrusive thoughts that also have their own solid almost traums inducing anxiety to go with them. Fun stuff.
TIL what-if questions result from OCD. I didn’t know that. In a sense, they’re a part of why I feel helpful prepping people’s cues like here all the time.
TIL what-if questions result from OCD.
It’s not the “what-if” that’s OCD, that’s normal. Even hypothesizing about worst case, traumatic, life-altering experiences is normal, healthy human behavior; you should always plan for the worst and hope for the best. It’s when it causes you anxiety/distress, and you can’t stop thinking about it, and it’s so persistent and invasive that you find it hard to function normally that it reaches the level of OCD.
Also, the OCD-level “what-if” often doesn’t make logical sense. Ex. people think OCD is “I need to wash my hands all the time”, but really it’s “if I don’t wash my hands, my loved ones could die in a car crash”.
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@rip_art_bell Yes I have Fibromyalgia and not many people know about how that works.
Even most doctors don’t understand it! Sad hooray!
I hear about this condition a lot. May I ask how it manifests?
@shinigamiookamiryuu It’s really unknown how Fibro forms, to be put simply it’s your body sending the wrong signals to your brain telling your body it is in pain (This is only one thing in fibro but a big part of it). Sadly there isn’t a easy way to test for Fibro, you have to be tested for many other things before you get to the possible diagnosis but as @xmunk mentioned most doctors don’t understand it, some don’t even think it is an actual thing.
Hypothetically, could dogs be used to diagnose it? I know dogs’ smelling ability can detect depression, cancer, and DID. Why not fibro?
One theory I’ve heard where fibro comes from, is that the body is always in fight-or-flight mode (for varying reasons), it never properly switches over to rest-and-digest mode for an extended period.
So, it could be that someone with fibro just smells like someone taking an exam, but like, even in theoretically relaxed situations.
It sounds like a good theory, but according to that theory, where would the pain come from? I don’t think I’ve ever been struggling on certain answers on an exam and suddenly it hits me (excuse the pun, I couldn’t resist).
I’ve basically only watched one video on this (of someone who’s supposedly medically trained, has fibro themselves and published a book about fibro), so you know, don’t think I’m an expert.
But well, according to this video, one common cause for pain in people with fibro is muscle tension. She said something like, what’s normally considered dangerous levels of muscle tension, where you’d actively medicate people in a hospital, that’s normal levels for fibros.
Obviously, you won’t get muscle tension in an exam, except maybe in your writing hand, because you’re not really using your muscles and exams tend to be short enough anyways.
Another suspected cause is that during fight-or-flight, your body releases testosterone, which inhibits, I believe, oxytocin production, which means your body slows down long-term regenerative processes. So, quickly closing up a bleeding wound is on schedule, but making sure your joints are regenerated before the next fight-or-flight situation, that’s lower priority while you’re supposedly still in a fight-or-flight situation.
@shinigamiookamiryuu I wouldn’t say you couldn’t but is a strange set of symptoms with things such as our pains as it can be effected by stress, mood, weather or even temperature. A dog could be trained to detect it as well as even help with service dogs but that’s a lot of money and research. As well as Fibro is very misunderstood as we aren’t even sure how it comes about, Trauma maybe, Born with it, possibly.
Based on your particular description here, a part of me wonders if it can be placed on the same spectrum as multiple sclerosis (something I am all too familiar with). If so, it might definitely help it be understood, as what people know about MS seems like it would serve as a good point reference for fibro.
@shinigamiookamiryuu It does have similar things to MS yes
I was gonna bring this one up, not because i have it, but my mother does. I barely under stood it after it was explained several times. Hardly no one knew what it was when my mother was diagnosed, some of other docters havent had even heard of it according to her.
@Breezy Yes sadly most doctors haven’t heard of it and if they have some don’t think it’s actually a thing. I’m very lucky in having my mum that also has the same condition so it’s nice to know i’m not the only one going through things.
Also no one knows if it is genetic there has been very little research about it let alone in that area. Glad you came to comment hope your mother has learnt to deal with the pains, fog and tiredness.
A lot of people don’t understand bipolar disorder, or schizoaffective disorder specifically in my case. “Had” being incorrect, as it’s a lifelong illness.
High five! Schizoaffective, type 2 bipolar. And some BPD sprinkled on top. Recently I got some changes in my meds and I finally got days when I’m mostly emotionally stable. Is this how people feel? Made me cry. I wish the best for you.
Same to you. I also have some BPD (another horribly misunderstood illness!) to deal with, but I’m old enough and in a stable relationship, so I think most of it is in remission. Bless my wife, because wow. I was a horrible person to deal with when I was younger.
Be well!
A close friend of my deals with schizoaffrctive disorder. One of the greatest guys I know, but it definitely has a huge impact on his life.
The illness impacts us all in many ways and none of us has it easy. I’m more fortunate than others in that I’m classed as “high-functioning,” whatever that’s supposed to mean.
I hope your friend doesn’t suffer too much, but I’m glad he has someone in his life who can be there for him.
Bipolar isn’t so bad: If you’re down or manic just be patient and you’ll be back to awesome again 👍. It’s the promise you must keep to yourself and the older you get the better you’ll get at it.
Schizoaffective disorder means that no one has power over you but you. Seriously, other much more sensitive people could off themselves because of something someone said but not you. Your emotional barrier is tough AF. You’re incredibly difficult to scam and a social engineer’s worst nightmare. You don’t fall for emotional trickery.
As somebody with schizoaffective, I don’t understand where you’re coming from saying it means I’m the only one with power over myself. In fact, I’ve found even after being well medicated I’m incredibly easy to manipulate. All you have to do is tell me somebody’s trying to control me and instantly I’ve spun a 2000 foot deep web about how they’re doing it. Then you just tell me you have the solution and suddenly I’m eating out of your hand.
And my emotional barrier is paper thin. I only look unaffected by things. In reality if I’m the slightest bit scared or upset, I’m breaking down inside and spinning another web to fill in the cracks. My whole existence is built on delusions and lies I’ve built up to keep myself together, such that even now that I’m in a place where I theoretically could start breaking them down and rebuilding properly, I won’t, because I’d fall apart, and I can’t handle that.
I’ve decided to just be happy being fucked up. Not because that’s right, but because that’s the only thing I can survive.
I’m incredibly easy to manipulate
Then let me manipulate you into being happy 👍
Dark Voodoo Intensifies
I like your positivity.
Luckily, I am happy most of the time nowadays, just, y’know, in spite of my disorder.
I wouldn’t go so far as to say that “bipolar isn’t so bad,” because it sure can be. However, I have stopped whining, complaining, and lamenting. I have accepted my illness. I take my medication and I try to live my best life.
Schizoaffective disorder is a much greater challenge, but again, I have accepted it. I bear this cross and no matter what happens, you’re right, I have power over myself. I may not always have full control over my mental faculties, but I have been through the hell of my mind turning on itself. What are the trivialities of life compared to that?
Life sucks for us all in different ways. I do not think I have it worse than anyone else, just tough in my own way. We each must deal with our own challenges.
I understand bipolar disorder (though as an observer). Emotional lag is the worst kind of lag.
I’m not sure how much of schizoaffective disorder I understand, but a friend of mine has it and know some of their experience.
Schizoaffective disorder is a terrifying and a lonely illness, so I hope that your friend doesn’t suffer too much — my heart goes out to them. I have my wife to help me when I need her, but I have otherwise chosen to isolate myself and handle it on my own. I take my meds, I take care of my mind and body, and I attend therapy to get the tools I need. I have always fought my own battles and I don’t think anyone can actually help me, nor could I ever bring myself to put that burden on anyone. I have my journal, the gym, my running shoes, and my workshop, plenty of healthy ways to get help without burdening anyone who doesn’t know what they’re signing up for.
Sorry about that, my friend. Remember, you’re always welcome here. Sending lots of hugs.
Much appreciated.
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I myself have never had a good experience with doctors, mostly psych ones. I’ve had some big issues combined with several minuscule ones like non-24 and stunted emotional quality, and they played around with all of them like it was interpretational. At one point was deathly allergic to at least one of my medications yet they weren’t so quick to change mine, leaving me to endure, as well as making counselors/psychiatrists legally mandated for many people where I live even for many who have no issues at all. Lemmy is slow to learn that whether or not medical professionals take their liberties is not a matter of debate.
People think I’m a drunk because of my rosacea.
Those are two completely unrelated aspects of myself.
laughcries in neurodivergent
What can you do though: People are idiots and I am one of them.
High five from an ADHDer!
It’s fucking hard to explain that yes, it’s possible for me to look like I’m operating like a normal person… but choosing to live and work in a way compatible with my brain isn’t laziness. The hardest person to convince was myself. Thankfully, now that I’m enlightened, I care a lot less what other people think.
Nobody is an idiot who tries their best.
Challenge accepted.
Achalasia. My esophagus does not squeeze food/liquid and it gets stuck in my esophagus. Since the nerves in the esophagus are dead (paraphrasing of course) this then causes the top stomach sphincter to not know food/liquid is coming and to open up. Instead, (pre-surgery) food/liquid piles up on top of the stomach and I would have to hope the sphincter would open up and let food in. I had times where I could not swallow water as it would just sit at the entrance waiting to be let in & would have to force myself to vomit as it started to hurt.
Post-surgery (heller myotomy with fundoplication) my esophagus is effectively a slip & slide and I rely on gravity to be able to get food down my esophagus and into my stomach. The top stomach sphincter has now been cut open and never closes anymore. They then stitch part of the top stomach lobe to the sphincter/ esophagus junction area to prevent stomach acid from backwashing.
Even if space travel for the masses occurred during my lifetime, I will never be able to go to space because I rely on gravity to get food to pass through my esophagus.
Space travel for the masses would need artificial gravity, spinning rings to generate forces that mimic gravity. You’d be alright
Wow that sounds heavy, first time I ever heard of it. At what age you got it diagnosed and treated?
First Dr visit was sometime in 2018 with surgery in Q2 2019’ish. I would have been 37’ish when symptoms first started coming on.
From what I’ve read, only 1 in 200,000 have it so it took multiple Dr’s to finally find one who said to me, “I was just at a convention last month and heard a talk about a condition like yours and just happens one of the top Dr’s on achalasia lives here in our city.” Few months later and I was scheduled for surgery and it’s been worlds better post-surgery. :)
It definitely affects my life every day with what I can & cannot eat (bread is a nightmare) but I take it in stride and drinks copius amounts of water with every meal.
I’m still impressed about it, especially learning it happened in your adulthood. Thanks for sharing!
How does that work for laying flat? If your stomach sphincter doesn’t close, do you have issues with reflux coming back up if you lay flat/try to sleep too soon after eating, or does the backwash stop it enough that it doesn’t matter your position? Either way, it sounds awful.
I do have to be cognitive of bending over after swallowing something because I can feel it trying to make it’s way back up.
For about a year, I used a husband pillow behind my pillow so I would sleep upright. Eventually, I figured out what works best for my body which is basically just make sure I don’t eat at least 2 hours before bed.
Other than that, the fundoplication takes care of preventing stomach contents from coming back. Here’s a quick video!
Thanks for sharing. That’s wild!
So you could say that because of gravity, you’re stuck on earth.
I see what you did there and I am disgusted to say I love you for it. :D
Don’t be sad about it! You’re the person who puts the fun in fundoplication!
Who wants to go to space if you’re not there, right?
Even if space travel for the masses occurred during my lifetime, I will never be able to go to space because I rely on gravity to get food to pass through my esophagus.
This was my first thought reading your comment. Have you considered the possibility that you are a bird?
Do you know if it’s possible to have some mild form of this? Me and my brother have been trying to work out our “digestive” issues for a few years with doctors with no success.
I can relate to the feeling of food/drink feeling like its “piling up” because sometimes I throw up last nights dinner when I’m brushing my tongue the next day.
It’s something that’s gotten worse as I’ve gotten older. I don’t know if that plays into it.
Never hurts to get checked. See about having an enscopy performed and they can check it out. Another procedure is called a Esophageal Manometry. They put a thin tube up your nose and down your throat and make you swallow fluids to measure how well your esophagus squeezes or in my case, they said it spasmed and basically doesn’t respond as it hood.
I wish you the best.
I have a few chronic illnesses. Individually I think they’re at least easy to explain, if not something people already understand, but trying to communicate the combination is hard.
None of them are usually that bad by themselves. Together the issues compound and make it extremely hard to attribute symptoms to something specific. Like, are the migraines a rare symptom from a condition, a result of them interacting, one of the medications I’m taking or a new issue? I don’t know.
And when you’re vague (as in, don’t pull out your entire medical record and attribute each symptom to a specific condition) or the issues sound too severe for what people already understand, you get some pretty… negative reactions. “My uncle had X and he was fine, you’re milking it for sympathy!” but did he have Y and Z as well? Did he have the same variant of X? Was he actually fine, or did you never really talk to him about it? It’s rarely apples to apples comparing disabilities but that’s how people a primed to react.
I’ve learned to deflect and fall back behind medically privacy in professional settings, but it can be stressful.
What are the chronic illnesses, if I may ask?
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Had mono as a kid. Parents got mad that I was being lazy because I didn’t get out of bed for two weeks.
Had mono in uni, for 7 fucking months. Like any good idiot, I wrote it off as my period first, then just needing to chill a bit. Then I got worried and saw a doctor, who said “mono almost never lasts 2 months, we’ll run some tests”. And meanwhile I should work on my stamina and keep training.
After half a year I got a different doctor, who did the mono test and tadaa. Told me to sit and do nothing, doctors orders. 6 weeks later it was gone.
Almost my whole class at school got mono one time. I remember there were so few people in my class that we were allowed to just not do anything.
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I used to have costochondritis which was an inflammation of the cartilage in my sternum. It would feel like a pressure on my chest that wouldn’t be relieved until I bent backwards to stretch and “pop” my chest. So occasionally friends and family would see me stretching and wonder wtf I was doing
I had that for a few years. Scary at first, then mostly just annoying to explain: yes I’m having chest pain, yes I’m sure it’s not a heart attack, yes my chest is going to make a noise.
I’ve had this too. Sometimes when I would stretch to crack my sternum, I would get this wave of heat and eventual pain in my chest. So it was a gamble every time I felt that I had to crack it. It’s been a lot better in recent years but it never really went away completely.
Yes, same thing would happen to me! It was a risk trying to stretch it out because if it works the pain would go away but if it didn’t pop, then the pain would be worse than when I started. Sorry you’re still going through it. My doctor recommended NSAIDs for the pain but they didn’t help me too much. Eventually the problem went away and I luckily haven’t had it come back
I came down with Type 1 Ligma as a junior in highschool. Most people don’t even know what the disease is
Damn, Ligma. I’ve heard that’s rough. 😂
This is the only ligma-related meme I ever laughed at.
Thanks Pipey.
Fine, I’ll bite
sigh What’s ligma?
You will bite? Not eat?
I will bite, and I will bite down hard
Woah dude totes lucky to b alive?!
