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
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).
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.
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."
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.
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.
people misunderstand it
are familiar with some of the symptoms
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.
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.
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.
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.
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!
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.
Space travel for the masses would need artificial gravity, spinning rings to generate forces that mimic gravity. You'd be alright
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.And shoutout to the doctors trying to tell me it is in my head and doesn't require urgent care.
Fuck those people... >:|
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.
@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 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.
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.
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.
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.
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.
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.
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!
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.
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.
Chronic migraine. People think its just a headache, but that's really just the most obvious symptom and least complex symptom. Family practice/generalized doctors know too little about it to recognize it. Everyone around you thinks you're just being dramatic. If they can push through a headache then why cant you push through a migraine?
Migraine is a cycle that lasts days. It has phases: prodrome, aura, acute, postdrome. The acute phase (the headache part) is just one phase. Sometimes the headache isn't even that bad, or long. Sometimes it lasts multiple days. Its a neurological disorder and, in a lot of ways, basically is like your nervous system short circuiting for a few hours or days. Triggers have a lot to do with severity, but there is also a lot of bad info about triggers too. With chronic migraine, you could avoid all triggers and still have 1-2 migraine events a month, and those events dont care about your calendar.
Because information is so badly shared and everyone (mostly unintentionally) gaslights anyone with migraine into thinking they're not suffering from a chronic condition, many of us go a long time before discovering useful information or getting diagnosed.
There are a ton of signs during the prodrome phase which, once you know what to look for, can help you avoid (sometimes) the acute phase by taking meds soon enough and focusing on avoiding known triggers. Even standard over-the-counter stuff can short circuit a lot of migraines before the most painful part. But also, some of the prodrome stuff alone can make working or completing tasks difficult. I often start having trouble speaking, get very tired, have difficulty focusing vision. General brain fog. This can be hours or days before an attack.
After the headache phase, the postdrome is often more brain fog, speaking issues, low energy, but also sometimes a euphoric state which can make getting back into your normal schedule really difficult.
I miss family events. I miss friend events. I have to cancel stuff all the time. I worry about scheduling things for fear of being in a headache phase. I've been lucky with employers being understanding, esp with the work from home setup and mostly DIY hours, but i absolutely couldn't work a job with shifts.
I can't imagine in a million years any mindset that would be behind gaslighting someone over something like migraines, unless they were actively trying out of free will. My first and even last instinct is to treat it as a hypothetical, especially considering we're talking about the most important/fragile organ. I've had friends/classmates who almost had to drop out of school due to them.
I find that most people are fairly understanding as long as it doesn't effect them. Coworkers and friends tend to give the benefit of the doubt and are understanding. Sometimes you have to remind them, but usually that clears things up quickly. Sometimes, those of us with chronic migraine also develop some anxiety about missing things or letting people down, even if people are very understanding.
The gaslighting... most of the time it's people who don't know enough about migraine (or don't care) and start to see patterns as laziness, avoidance, or similar. Miss a few wednesdays in a row? Guess what, your manager might think you're avoiding that wednesday team meeting... Miss a few tests or a presentation in class? Well, clearly that's because you weren't ready and wanted to buy yourself more time... Sometimes they've bought into some misinformation that all you have to do is eat some magical salt every day and you'll be cured. Or they disbelieve the existence of chronic conditions entirely. That's where a manager will find a way to use some performance metric to get rid of you or a professor will treat you like a drain on their time.
All of this is in the context of the United States (I'm sure many other countries handle this a lot better, as usual). It's really uncommon for migraine to be well-understood at work or school. Especially if you don't have a current diagnosis, which is also common since doctors tends to brush it off or require some extreme logging to even consider, or insurance companies will refuse to pay for the testing and MRI scans usually required to have an official diagnosis and meet ADA requirements. Like any non-physical disability or illness, schools and employers tend to continually forget and fall way short of ADA recommendations. Especially with chronic conditions that may have phases of being worse or non-existent for months at a time. "Well, you didn't have this problem last quarter, so what gives?"
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".
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.
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.
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.
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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 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.
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).
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.
Sympathies. Chronic vertigo is horrible, especially when it leads to nausea. Hope you find an effective treatment soon.
Go see neuro. Get an mri at least.
I think this may more for acute vertigo, but have you tried the Epley maneuver?
The epley maneuver is to treat BPPV- where an otolith becomes dislodged and then finds its way into a semicircular canal (normally the latteral canal). If it was causing vertigo it would have to be the posterior canal. Not to say it isn't possible, but it is the statistically least common canal to happen in. Not only that, but the epley wouldn't treat it. Even then, this strongly doesn't sound like BPPV, whose episodes would last seconds to minutes. If the episodes are lasting minutes to hours it is a short list of other possible things. best case this is vestibular migraine of it was vestibular related. More likely this is central involve ment and the person needs to see a neurologist. I have seen patients like this before for balance accessments. We will do the testing on them(VNG and caloric testing), but then have to tell them to go to a different department because it isn't part of the vestibular system causing the problem. I would push to see an ENT/neuro/PCP sooner than later because worst case is it is a developing vestibular schwanoma (non cancerous tumor) and the sooner the better to take care of it or at least monitor it.
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 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 pass gas?
Yes. More than others, in fact, because the gas has nowhere else to go. Sometimes it makes a weird gurgly noise though.
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!
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 am a caregiver for a person with rare b-cell lymphoma (chronic illness, treated with a biologic drug rather than chemo) and I've noticed 90% of people don't understand what chronic cancer means. People can't really comprehend someone being better than on their deathbed but much worse than their "normal" health and energy level, and that state will never end. I think popular culture portrays cancer as either "about to die" or "in remission", rather than showing portrayals of the weird in-between state many patients find themselves dealing with.
Society is not able to understand chronic illness. Full stop.
The bias is you interact with people able to do normal society actions, because all the people who can’t are not interacting that way.
You grow up as a kid thinking,”this is how things will be for me and everyone I know. This is normal.” Then you experience chronic illness and realize you NEVER get “better” (read back to 100% fine). I am guilty of this. Then I didn’t get better.
We hide so much in how people suffer. We hide how illness impairs the lives of many in the US especially. We work to get basic medical care. So many are forced to show up broken to work, and hide it to retain care. Once we can no longer show up to the job as it demands, we get fired or are forced to resign, or in the most ideal of circumstances, we are forced to take long term medical disability.
I work every day not to avoid that end, but to forestall it for a little while longer. I buy time in the currency of my stress and well being. Once I am not “in society” any longer, my disability will be hidden and whoever takes my place gets seen.
The world doesn’t understand chronic illness because it’s hidden unless it happens in your household or to you.
I am very sorry. Sending my best to you!
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.
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.
Thank you. Long Covid is exactly what prompted me to create this post. I've been having symptoms for 15 weeks (insomnia, brain fog, exhaustion). My primary care doctor was useless.
I've since discovered a lot of literature on my own that has validated my experience: that it's typical for general doctors to have no clue, they're still working on finding good biomarkers for the condition (it's not easy to test for), and I've learned a bunch about PEM (post-exertional malaise) and self-pacing / energy-management techniques to prevent the push-crash cycle that people with Long Covid experience.
Did you take an antiviral like Paxlovid when you had COVID? Apparently they're supposed to reduce likelihood/symptoms of long COVID, but there's not a large amount of published research about it yet.
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?
People think I'm a drunk because of my rosacea.
Those are two completely unrelated aspects of myself.
If you're a recovering alcoholic (or someone generally trying to minimize risks from alcohol) and you're friends or coworkers with people who regularly booze, probably many of them cannot consider how their social actions might create an unhealthy environment for those around them.
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.
A collection of autoimmune diseases
No, I haven't.
I came down with Type 1 Ligma as a junior in highschool. Most people don't even know what the disease is
Fine, I'll bite
sigh What's ligma?
Damn, Ligma. I've heard that's rough. 😂
Woah dude totes lucky to b alive?!
