I have a few, but the most commonly misunderstood of these… I don’t even know if it has a name. I’m just socially slow and people assume I’m an introvert because of it.
Made worse because schools put people in special education classes for social issues, they can’t comprehend for some reason that people just don’t all socialize the same way.
It’s not all that uncommon either if you believe in the statistic that the average person lies a hundred times a day. WHY do they lie a hundred times a day? Because of exchanges like this.
“Hello.”
“Hi.”
“Hey, how are you today?”
“Good, just finished washing the dishes.” (lie to keep the conversation alive)
Which means our society, by training people to value sociability more than friendliness, are breeding its own compulsive liars. And on a side note, that brings us to another ill people don’t understand, because people think compulsive lying is a “bad seed” kind of thing when our environment (and sometimes the rebound after being 100% honest for a long time) can make us that way.
No, I’m saying it can lead to lying in other people, because people begin to realize it’s easier to come up with little conversational lies than it is to think of what things in one’s own life are relevant enough to mention in order to keep a conversation alive. I’m saying me being socially slow is the illness. One person I know likened it to dyslexia but for charisma instead of literacy.
It is completely 100% ridiculous to try to ‘diagnose’ you from this short of a description, but it could be that you’re autistic to some degree.
Us autistic folks like to take moral issues a lot more personal, like having to lie. We’re often at odds with societal standards. We may feel like we’re socially slow, even though in my experience, it’s usually just that we socialize differently. And we definitely overanalyze things.
You wouldn’t be the first to suggest it’s autism (and I thank you for your hoping to help), though I’ve asked doctors about that before and they say they themselves see little going for the theory I have autism (as opposed to, say, dyspraxia, dyslexia, and this which all are equally possible/probable/improbable as causes except the last one). I can relate to the societal standards part though, it was one of the thought processes behind a recent post of mine that seemed to have gotten a mixed response.
I do also have anhedonia, but I never 100% could confirm how much of a connection it has because of how differently it manifested based on the time of my childhood.
If I asked people what subaoritc stinosis is, there is absolutely no way the average Joe or Jill would understand what that is or what it causes. So, that.
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.
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.
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.
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.
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.
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.
I have agoraphobia related anxiety. It causes me a great deal of stress and discomfort when I’m outdoors and away from a “safe” zone like my car or my house. I get panic attacks. You will never see me decide to go for a 30 minute walk outside.
It’s such a difficult thing to explain to people that it’s not social anxiety that keeps me from going to certain places, it’s the fact that I have to physically move away from my comfort zones.
I’m not severely agoraphobic to the point of not leaving my house. I go to work everyday and go to stores and such. But my car is always nearby.
I have ADHD, and most people _mis_understand it. They are familiar with some of the symptoms, like that it’s hard to focus, but completely unfamiliar with others, like that having an hour appointment in the afternoon can basically block out your entire day. I rely on and even thrive with medication, but there’s a nationwide Ritalin shortage that has basically kept me from working for the past month while I figure out a new medication.
At first I thought “no, but I’ll read the comments. Maybe it’ll help me understand my fellow man.” Then the top comment was ADHD and I was like, " oh yeah I do have that lol."
having an hour appointment in the afternoon can basically block out your entire day
I’m curious…what do you mean by this? I don’t have ADHD, but I do find it very difficult to relax if I know I have to be somewhere later in the day. Is it anything like that? Or is it something else? Just wondering!
Thankfully I am not that bad but I absolutely relate. One simple task turns into three or four and you often forget about the original task in the first place.
I’ve heard it’s related to time blindness. Basically I can’t become invested in a project if I know I’ll have to break out of it shortly. So if I have an appointment at like 1pm, I either have to start my day really early to make sure I can get like 6 hours of work done before noon, or start my day after the appointment and work into the night.
It’s a lot easier when I’m on Ritalin, but it’s still difficult to plan around.
That’s basically why I always schedule any appointment for early in the morning, if I can.
It’s super frustrating when people are like “oh sure I know about how ADHD works”, when in reality they skimmed the webmd or wiki page for it that mostly just enumerates various ways in which it may present, without even registering that the implications of how the symptoms affect my life.
Sadly psychiatrists and counselors don’t help here. They see one symptom and think “oh let’s add ADHD to this person’s diagnosis list”. And they wonder why the ritalin shortage exists.
Wait, really? I just posted a comment about how it’s better to talk to a professional instead of self-diagnosing. Your comment makes me question my other comment.
Yes really. It largely depends on the place, but I can absolutely positively confirm this is how many of them operate. Not just with ADHD either. I’ve known people with TBI whose TBI is treated as bipolar on the sole basis that people hear bipolar and think mood swings. There’s one person I know who was put on two lithiums a day for it and then yanked off of it and had to endure a whole month of hallucinations, only to be put on half of the original lithium dose again, all because they didn’t properly insert TBI into the diagnostic list and thereupon this one psychiatrist just assumed it was bipolar (when there are differences in how mood swings from both manifest; TBI is rapid fire and bipolar is more like a long storm).
Every time I mention psychiatrists on this website, I get hated on, but I know my experience and the things I say are not going away. They and counselors DO overstep, they DO take on each others’ roles and functions, and they DO conflict with each other at times. Glad to know though the same people here who say the US health system is shit also claim the psychiatry system is somehow a perfect well-oiled machine, free from people acting outside of their jurisdictions.
in my experience, there’s not even as much consistency therapist to therapist, psychiatrist to psychiatrist, as there is in the rest of the medical field.
I love my psychiatrist, but what I love is that she’s very much about staying up to date and knowing what she’s prescribing, and probing to see if it’s working (I am a terrible judge the worse off I am. no, really, it’s fine, I can just wake up a little earlier and add a panic attack to my morning routine, don’t change my drugs. huh…ok, since we upped the dose, I haven’t had a panic attack, I guess that was a good idea.)
It’s still true. There are soooooo many people with diagnoses that don’t match what they actually have. And some consulted professionals are way too quick to diagnose these things, especially in the child psychiatry industry, especially with child psychiatrists (who often put too much emphasis on one family member), especially with things like what I described. It’s far from an archaic experience.
On that note, I want to mention that I have seen and heard of a lot of people (mostly online) who self-diagnose with ADHD. Believe it or not, extended social media use (I’m not sure if Lemmy falls into this, it mostly refers to places made to be addictive like TikTok, Instagram and others) has apparently been shown to cause some symptoms of ADHD. I’m just using this comment to tell anyone reading it: if you think you have ADHD or any other mental health issue, talk to a professional, don’t self diagnose. It can be destructive to yourself to think you do or don’t, without checking. If you have symptoms, talk to a professional. And I’m sure OP whose comment I’m responding to will agree with me on this. Thank you. And you will one day thank yourself too.
Yes, I agree, if you think you have it, you should get in touch with a professional. If you don’t have it, you may have some other condition that can be treated, or there may be ways a psychiatrist can help. And if you do have it, treatment can make a huge difference to your quality of life.
Appointment inertia is the worst. I can’t do more than one appointment in a day. It’s not like a cute lil ‘oh it’s so hard’ thing, I literally cannot do the cognitive processing required to do more than one appointment a day.
The other one that people never understand is the hyper focus side of ADHD. If I get rolling on a task: 1, don’t stop me I will not get back on task. 2, I will forget that planet earth exists, food becomes an afterthought, and breaks, even restroom breaks simply don’t happen.
Very annoying. Most ppl already struggle to understand ADHD. Now try to explain autism or what it feels like when you have both. But then again, I also don’t fit in with the autism crowd cause my autism is just light enough that I recognize my mistakes but I can’t fix them.
I mean tbf how could someone understand autism if I don’t really understand it myself. How could I, I’ve been born with a warped brain, I have no comparison.
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
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.
Any type of neurodivergence is not graspable for the majority of people, as it would require high skills to think in somebody elses shoes.
Debilitating chronic fatigue is called being lazy and as I just found out very recenty I have cerebrospinal fluid leaks which cause these issues. Hope it gets fixed soon. And shoutout to the doctors trying to tell me it is in my head and doesn’t require urgent care.
I am not sure why this profession believes every medical problem is easily reliably diagnosable and the rest must be in the brain like some pre-renaissance understanding of human anatomy.
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.
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.
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!
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.
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?
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.
My Dad lived with diagnosed Crohns for 25 years. We covered for him as a family however we could. But you just don’t get how debilitating it can be unless you’re intimate with it.
As a kid I thought my dad was lame and a bore for not doing a lot of things I wanted. As an adult and having cared for him for most of the last 10 years, I realized he was a warrior that achieved more than any other in his body could’ve.
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.
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.
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.
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.
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.
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.
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.
@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.
@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.
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.
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.
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