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.
having an hour appointment in the afternoon can basically block out your entire day
I feel this bullshit so hard. Nobody gets it
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.
Came here to see if anyone had mentioned ADHD. So much misunderstanding. The name of it doesn’t help either.
Sorry to hear about the Ritalin shortage. Going without meds for more than a week super sucks. (I’m on vyvanse though).
Call it EDD (executive dysfunction disorder) which is a part of ADD and you’ll find more people want to know what it is and don’t just assume.
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.
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!
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.
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.
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.
That may have been true in the 80s and early 90s.
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.
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.
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
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!
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?
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.Cancer. Sure, people realize you undergo treatment for a while. You may be in the hospital for a bit. You’re very sick but you do your best. Eventually (maybe) you get to some state termed “remission.” You’re probably no longer being admitted to the hospital at this point. So you’re basically all better right?
No. Not at all.
There are lingering problems that vary among patients. It’s hard to explain. Very few people understand what it’s like to feel under the weather for days, weeks, months. To live with the fear of relapse. To wonder if the chemo you underwent will cause you to develop a secondary cancer later. To have bone damage from steroids. To have increased sensitivity (read: pain) in many senses/ places from the courses of radiation. To have to fight harder for jobs if you lost yours (or didn’t have one) and now have a gap. You may be such a determined, hard worker, but it doesn’t take much to be seen as a liability.
Even if someone thinks they understand, they really probably don’t. You dont even fully understand what’s happening—today you wake up and just can’t. You’re tired. You’re trying but you’re so tired.
I can’t get too upset, I guess, with people who don’t understand. But I wish they could. Things may get better, but they’ll never really be back to “normal,” whatever that even means.
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”.
ADHD+Autism
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.
You can kinda understand through extensive observation, but there’s only so many comparisons you can make since every person is unique.
Asthma. People expect you to have dramatic TV style throat closing episodes where you turn blue grabing your throat as you gasp and gag. For me, an episode is just sudden onset hypoxia. I’ll feel my lungs get tight, but because I’m still getting some air it can be hard to tell I’m suffocating, especially if I’m distracted. When it happens, I have about 3 - 5 minutes to catch it. If I fail to catch it, I’ll quickly lose balance, struggle to speak, I’ll be unable to think, and finally my vision darkens to a dot, and then I black out. I can appear fine, and then out faster than anyone expects.
Once I get a puff, I’m fine in 10 seconds (minus some shaking from the medication.)
I remember watching V for Vendetta and Evie’s dramatic asthma made me cringe so hard, like imagine even the highbrow movies getting it wrong.
The inhaler for me felt like pins and needles in my chest. If I didn’t have it though I would go down
Its a bit different for me. I start to shake a bit. Feels like I’m vibrating uncomfortably.
I have a couple.
-
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.
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.
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.
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.
-
I am living with chronic vertigo. I don’t know if it counts as an illness, but having this condition has made day to day living rather difficult. I feel strange all the time, there’s this constant swaying sensation, my head feels like it is wrapped in layers of gauze and on really bad days even my vision appears clouded. I can’t stand for prolonged periods when even sitting down doing nothing much feels like a drag.
I appear outwardly fine though, and even my family members forget that some basic actions that they think nothing of no longer come with ease for me. Everything I do, even holding onto, say, a plate, when I am doing the dishes, I am doing it with utmost deliberate effort because the internal swaying sensations I feel have me thinking I am going to tip over any moment and I will end up dropping whatever I am holding.
If seizures count as an illness, vertigo definitely does. I don’t get vertigo but I got mildly irritated once when someone was behind in the DVD clearance section of Walmart once and said “they need trigger warnings for vertigo now? What has society come to?” (it was a racing movie with lots of excessive dutch angles). I bet the whole aisle got distracted by my attempt at explaining sometimes these additions are just appreciated if not for some people being so obsessed with media freedums that they forget the human body exists.
I work with a guy who suddenly developed this in the middle of a call. I had to help him back to the office, stopping so he could puke a couple times. He was gone for a while and I don’t think he ever got rid of it.
Unlike the othe comment, this DOES sound like it could be BPPV, where something like the epley maneuver would work. Typically we would use the Semont-plus maneuver (same idea, slightly different). Or there is a fun half somersault maneuver the person could try on their own.
Bppv will be brief but intense episodes lasting seconds with lasting nausea for minutes and exasterbated by head movements. You will also see their eyes jumping or flicking (nystagmus).
Go see neuro. Get an mri at least.
Sympathies. Chronic vertigo is horrible, especially when it leads to nausea. Hope you find an effective treatment soon.
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.
Can relate in a way. Also, all of what you describe is probably going to be revealed to be one super large spectrum that nobody cared to map out.
I physically can’t burp. The muscles in my throat don’t open to let air out. We had r/noburp on reddit, but I don’t know if there’s an equivalent here.
Oh shit, there are others!
And then there were three.
Can you throw up?
Last time I threw up was around 6 years ago. I can, just very rarely.
Can you buy a car?
Nope, I don’t have a driver’s license.
Can you pass gas?
Yes. More than others, in fact, because the gas has nowhere else to go. Sometimes it makes a weird gurgly noise though.
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.
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.
What? Are you saying your illness is lying? I’m not really following…
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.
Ah gotcha, that makes sense. Thanks!
Chroma disease, people don’t get that when I’m burned out for the day it won’t help to take a short break. Immunosuppressants are a bitch.
Edit: shitty Phone. Yes Crohn’s
Crohns? That’s what I have and “invisible disability” is an apt description.
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.
There’s threes of us here!
deleted by creator
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.
