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  • 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 have a couple.

    • Celiac disease. Most people, if they’ve heard of it, believe it’s a physical intolerance to gluten/wheat similar to lactose intolerance. Or, many people think it’s semi-imaginary gluten intolerance and some insist it doesn’t even exist. In fact it is a serious autoimmune disease that affects about every system in your body, and can produce dozens of symptoms ranging from complete debilitation to mild discomfort. Hair loss, dry skin, chronic diarrhea mixed with constipation, anxiety, memory loss, brain fog, insomnia, extreme fatigue, slow growth in children, anemia, osteoporosis, and even more… plus can lead to other autoimmune diseases. Nobody knows what causes Celiac as 30x as many people have the genes as ever develop it, and it can start at any time in life.
    • type 1 diabetes. Most people have heard diabetes as the 24x as common Type 2 Diabetes, and believe diabetes in general affects overweight people and has something to do with eating “too much sugar”. That’s not quite right for type 2 but it also has nothing at all to do with type 1. T1 used to be called “juvenile diabetes” because it affected people from ages 0-25. However, they changed the name because they found adults could get it, which is what happened to me (called LADA). Type 1 and Type 2 are practically opposite conditions that both affect your glucose regulation and have overlapping effects. Type 2 is where your body puts out so much insulin, it stops responding to insulin, called insulin resistance. It can be reversed to some extent by diet and exercise. Type 1 is an autoimmune condition where your body destroy the cells that produce insulin, leading to no insulin in the body at all, which can quickly be fatal. Unlike type 2, there’s no lifestyle or diet correlation, only genetics.

  • I 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.

  • 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.

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