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 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.
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.
My experience with post-covid symptoms was really nasty and the doctors couldn’t diagnose me. I actually wrote a big lemmy essay on it like seven months after it all started. I’m not sure how to do cross-instance comment linking, but here is the lemmy.ml link.
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 multiple symptoms from birth which cause me pain, loss of some body tissues and could render me unable to walk. Doctors always ignored me. I convinced myself I communicated badly. I made extensive list of everything. Ignored again. Got a full DNA test which shows inborn issues with same symptoms. Still ignored. Still in pain. Completely hopeless. Tired. Recovering from another surgery with complications. If they addressed my issues, I don’t think I’d ever need surgeries. But I had around 10. I developed a complete disdain for medical personnel. They feel purposefully malicious in the negligence. I don’t understand it.
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.
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.
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.
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 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.
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.)
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