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!
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.
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.
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.
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 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.
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.
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.
I’m incredibly easy to manipulate
Then let me manipulate you into being happy 👍
Dark Voodoo Intensifies
I like your positivity.
Luckily, I am happy most of the time nowadays, just, y’know, in spite of my disorder.
High five! Schizoaffective, type 2 bipolar. And some BPD sprinkled on top. Recently I got some changes in my meds and I finally got days when I’m mostly emotionally stable. Is this how people feel? Made me cry. I wish the best for you.
Same to you. I also have some BPD (another horribly misunderstood illness!) to deal with, but I’m old enough and in a stable relationship, so I think most of it is in remission. Bless my wife, because wow. I was a horrible person to deal with when I was younger.
Be well!
A close friend of my deals with schizoaffrctive disorder. One of the greatest guys I know, but it definitely has a huge impact on his life.
The illness impacts us all in many ways and none of us has it easy. I’m more fortunate than others in that I’m classed as “high-functioning,” whatever that’s supposed to mean.
I hope your friend doesn’t suffer too much, but I’m glad he has someone in his life who can be there for him.
I understand bipolar disorder (though as an observer). Emotional lag is the worst kind of lag.
I’m not sure how much of schizoaffective disorder I understand, but a friend of mine has it and know some of their experience.
Schizoaffective disorder is a terrifying and a lonely illness, so I hope that your friend doesn’t suffer too much — my heart goes out to them. I have my wife to help me when I need her, but I have otherwise chosen to isolate myself and handle it on my own. I take my meds, I take care of my mind and body, and I attend therapy to get the tools I need. I have always fought my own battles and I don’t think anyone can actually help me, nor could I ever bring myself to put that burden on anyone. I have my journal, the gym, my running shoes, and my workshop, plenty of healthy ways to get help without burdening anyone who doesn’t know what they’re signing up for.
Sorry about that, my friend. Remember, you’re always welcome here. Sending lots of hugs.
Much appreciated.
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.
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.
deleted by creator
Even most doctors don’t understand it! Sad hooray!
I hear about this condition a lot. May I ask how it manifests?
deleted by creator
Hypothetically, could dogs be used to diagnose it? I know dogs’ smelling ability can detect depression, cancer, and DID. Why not fibro?
One theory I’ve heard where fibro comes from, is that the body is always in fight-or-flight mode (for varying reasons), it never properly switches over to rest-and-digest mode for an extended period.
So, it could be that someone with fibro just smells like someone taking an exam, but like, even in theoretically relaxed situations.
It sounds like a good theory, but according to that theory, where would the pain come from? I don’t think I’ve ever been struggling on certain answers on an exam and suddenly it hits me (excuse the pun, I couldn’t resist).
I’ve basically only watched one video on this (of someone who’s supposedly medically trained, has fibro themselves and published a book about fibro), so you know, don’t think I’m an expert.
But well, according to this video, one common cause for pain in people with fibro is muscle tension. She said something like, what’s normally considered dangerous levels of muscle tension, where you’d actively medicate people in a hospital, that’s normal levels for fibros.
Obviously, you won’t get muscle tension in an exam, except maybe in your writing hand, because you’re not really using your muscles and exams tend to be short enough anyways.
Another suspected cause is that during fight-or-flight, your body releases testosterone, which inhibits, I believe, oxytocin production, which means your body slows down long-term regenerative processes. So, quickly closing up a bleeding wound is on schedule, but making sure your joints are regenerated before the next fight-or-flight situation, that’s lower priority while you’re supposedly still in a fight-or-flight situation.
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 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
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
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.
