being uncomfortable with illness
Illness is a really touchy topic. Some think it is very private and something you shouldn't really share. I think this stems from the fact that we still live in a society where it is expected of you to be healthy and able, and that showing weakness or illness, especially chronic, is seen as a personal fault, a liability, or a vulnerability to be exploited. So, seeing others being open can feel like they are setting themselves up for failure or bad experiences, and that makes people either very protective of you, or weirded out and implying something you do is inappropriate. The goal is to get you to stop because of worry or secondhand embarrassment. I assume the embarrassment happens because they think about what would happen if this were them, and they assume the worst to happen. Maybe there is also shame about their own issues.
It doesn't help that the details of almost any disease can be icky. Admittedly, it is on the ill person to codeswitch appropriately, even when after all this time of openly talking to your doctor and other patients has lowered the threshold of what you shamelessly talk about. You might make jokes about shitting yourself with other patients or that one friend who loves that humour, and you have to be detailed in conversations with your doctor; but it isn't really helpful elsewhere automatically. There are a variety of ways to talk about disease that don't divulge personal info if you don't want to, that don't unneccessarily describe something in extreme detail that can be upsetting, and clinical terms add more professionalism and distance to it. You can talk about your general day to day life in terms of your energy levels, what you can do and can't do, what you eat, how you manage your hobbies, what tests you got done at the doctor's office and more so people still learn about your condition and life without being crass about it or upsetting people that have negative reactions to body fluids, excrement, syringes and so on.
Having that out of the way, it is disappointing how even when you are professional, surface-level and sanitized in the way you talk about illness, some people still cannot help but react with discomfort and attempt to end the conversation or move it elsewhere. I get it - illness is scary. It reminds us of our own mortality. It reminds us that we can start experiencing symptoms of something each day. Thinking of how there is no cure or a 100% success rate for many things is awful. Maybe we lost someone to that illness already and it's a very difficult and sad topic or even triggering.
But people who are sick are allowed to talk about being sick where others can see it. They should be able to talk about how this affects the topic the space is about. They should be able to exchange some tips or get some "Oh same, I feel that too" or other encouraging words of fellow sufferers without you attempting to squash it. They are already doing a lot - withholding a lot of info and potentially gross details, keeping it very short, keeping it positive and light to not be depressing - basically self censoring - and finding ways to tie it back in to the initial topic or something else so it doesn't dominate. There are outliers of course who are bummers, but I really do think most people are not there to be the center of attention or seek pity; it's just nice to see one another in an unrelated space occasionally and connect in unexpected ways.
This was somewhat sparked by an experience I had in a Discord server talking about a game. There's already a habit there of talking about accessibility features as well as personal limits since the genre of the game tends to attract disabled and chronically ill people, whether it is physical or mental. Usually, the 'general' channel of a server is reserved as an overall miscellaneous channel of all kinds of topics, while other channels dedicate themselves to specifics. I've seen that general channel not be about the game for hours sometimes, unmoderated. Music, bands, how you're currently feeling or doing, what you dreamed about last night, other games, all that. And I like that! The chat in there is so lively, there's usually multiple discussions going on at the same time between different groups of people, so there's usually multiple things going on that you can respond to. Even if you don't find what one group trails off to interesting, there's still other stuff to respond to and read.
Still, when it briefly - and I mean briefly, like about 10 messages while others were talking about other things in between, like mounts and gems - went to chronic illness because multiple others talked about feeling old initially before it delved into people saying they are chronically ill, a mod immediately stepped in and referred to a dedicated off-topic channel. Mind you: that general chat is already pretty much used as off-topic, and when the mod linked to the other one, many said they didn't even know it existed, or couldn't see it/had access issues.
Disclaimer: There were no hurt feelings, no arguing, no bans, no muting, and the mod said it in a nice manner - there was no drama. Still, I felt like that particular topic was cracked down on unreasonably fast and "hard" compared to other things in that channel; especially considering there were other game topics going on at the same time, so it didn't dominate, and the channel they tried to move people into was basically an unpopular "out of sight, out of mind" channel, like it's something shameful to be hidden away. It ties in with the above mentioned thought that this is something private, icky, or heavy that people need to be sheltered from, even when it is very brief, neutral to positive and surface level - people already offered to discuss more in DMs when the mod doubled down on it, and the messages were written in a way that the topic would have moved on by its own within minutes without any intervention. Some point after, people discussed what type of cheese they liked in real life with no mod intervention.
It's a strong contrast to my own life and attitude to witness, because that's just my and many others' normal. I cannot separate or hide it away. It belongs to my daily life and experiencing the game just like bands, dreams, movies or other things belong to others' daily life that are discussed there. That means I will likely talk about it just the same as someone else talks about their homework. Seeing others' basically unbridled discomfort with it - even when very respectfully shown and articulated - kinda makes me feel like a freak, and I am not alone in feeling this way.
I think it's even more ridiculous when people refuse engage with it at all. Or drop you. People who have or had cancer have a ton to say about this and that's not a new or revolutionary thing to acknowledge. But it happens for much less severe things too. I'll say it: I am not dying, but since I told one of my parents I have Crohn's disease, they stopped talking to me and have never responded to that message. It's silly, but it happens.
I guess the moral of the story is: Get a grip, and get comfortable. It will either be you, or a family member, or a friend, or your partner(s) who will become sick and/or disabled at some point, maybe multiple of those. People you have yet to meet may be ill. Your potential future child, niece or nephew may be ill or become ill. They maybe need pills, patches, infusions, syringes, pens, canes, walkers, wheelchairs, or other things. They'll have hospital stays and rehab and physical therapy. Maybe they can't hold that button anymore or have trouble with a controller. Maybe they have memory issues, tremors, muscle wasting, pain. Maybe they need adult diapers. The way society is structured and buildings are planned and executed tells you everything about how we push away illness, aging and death and therefore cannot acknowledge our need for ramps, lifts, elevators, flat escalators, wide doors, more benches and public toilets, flexible work models, more WFH, accessibility options and accommodations in software etc. but the reality is, all of us will get old, and by extension, ill and disabled, unless we die earlier. So treating it like a topic that is not relatable, relevant or normal for the average person is silly.
Published 02 Sep, 2024, edited 2Â weeks ago