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.
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.
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.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.
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.
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 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.
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 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.
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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.
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 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.
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.
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.
People think I'm a drunk because of my rosacea.
Those are two completely unrelated aspects of myself.
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.
