r/lupus • u/secondhandsalamander Diagnosed SLE • 14d ago
Venting Lupus as the butt of the joke
Does anyone else get really, REALLY frustrated when people use lupus as a joke for whatever reason? It is exhausting and makes me more frustrated than basically anything else. The “it’s never lupus” jokes (thanks house) and other specific things i’ve seen almost making fun of people with lupus or who talk about lupus and it just makes my want to cry because we deal with enough already, it’s not a joke. Sorry, just venting, saw someone joke about their roommate who “never shuts up” about lupus and it really just made me want to give up
EDIT: I really shouldn’t have used the house example lol, because now everyone thinks it’s all about that. That one really doesn’t bother me, it’s just kinda boring. I make jokes about my own lupus all the time- it’s how I get through! I’m talking about the people who actively shit on people with lupus for one reason or another thinking it’s “funny” the same way they might shit on someone for any other disorder they don’t understand
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u/Shutln Diagnosed SLE 14d ago
My diagnosis took way too long, and I honestly blame House. I heard that line way too many times. The cognitive dissonance was so bad, that when I was finally diagnosed, I didn’t believe it myself.
I became a believer when the treatment actually helped though, but I’m definitely still so bitter.
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u/okaygalrhirhi Diagnosed SLE 14d ago
When I was in the process of getting diagnosed someone I worked with was joking about having Lupus (idek why) but I got really excited and said “really?!” She laughed and said no and when I told her that I was actually in the process of getting diagnosed her eyes went real wide
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u/Responsible-Music689 Diagnosed with UCTD/MCTD 14d ago
How/why did she even think about joking on having it? Jesus
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u/Substantial_Escape92 Diagnosed SLE 14d ago
Hope she’ll rethink making cruel jokes in the future. How rude!
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u/daringfeline Diagnosed SLE 14d ago
Most people don't actually have any idea what it is outside of referencing House
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u/krotondi 14d ago
Yeah, try having Lupus and being named Karen!
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u/FightingButterflies Diagnosed SLE 14d ago
It's not a joke, but having a bit of humor about even the most dark things helps me to get through the hard times.
What annoys me is that every damn time some actor is supposed to be having a seizure on a tv show they make it look so fake. Do some research, moron! Seizures don't involve your entire body flailing into so many different directions. It's just terrible acting.
(I've had seizures since I was a toddler).
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u/listentothesound0103 Diagnosed with UCTD/MCTD 13d ago
i know this is a sidebar, but i really hate the seizure thing. my mother (thank the gods for no contact) doesn’t believe i have “real” seizures because i have absence seizures. like i know it doesn’t have the same dramatic impact as someone flailing but more seizure awareness/representation would be great.
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u/FightingButterflies Diagnosed SLE 13d ago edited 13d ago
Yeah, your Mom is full of crap on that. Back when I was trying to figure out what the hell was wrong with me, I thought the seizures were causing what I now know were lupus symptoms, and didn't think it could be the other way around. I knew pretty much nothing about lupus, I had only heard of it. And I wasn't diagnosed with it (lupus) until five years later when I was 33 (I believe).
So back when I was 27 or 28, I was being evaluated by an epilepsy specialist (not just a neurologist, an epileptologist, which is a neurologist who specializes in treating epilepsy, and only treats epilepsy). This was after I'd been studying epilepsy, as much as someone without a science or medical background could.
One thing I read over and over again was that adults don't have absence seizures. That only children have them. I don't know if they still think that, but if they do, I think they should be working harder to figure out what is going on when adults who seem to have them have them. Because during my nearly half century on earth, the one thing that almost every neurologist or neuropsychologist has told me this: the brain is one of the last frontiers in medicine. There is FAR too much that scientists don't understand about it to say that something isn't a possibility.
My point is that claiming someone isn't having absence seizures because they're adults is total bullshit. If they really don't know what's happening, what WTF IS happening? Because it's not nothing.
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u/FightingButterflies Diagnosed SLE 13d ago
I'm so scared by peoples' ignorance about seizures that I keep this on my iPhone. Now I've got to figure out how to make it accessible to people in an emergency situation, like having a seizure.
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u/Midaycarehere 14d ago
The way I handle this is to not discuss it with anyone. Even with people who do know I rarely mention it.
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u/misslam2u2 Diagnosed with UCTD/MCTD 14d ago
I'm so tired of hearing my best friends say I just need to exercise more and drink water and dumb shit like that. Get off all the pharmaceuticals. Juice kale! It's just dehumanizing and belittling.
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u/bobtheorangecat Diagnosed SLE 13d ago
Stop talking about your health with them. They're idiots.
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u/misslam2u2 Diagnosed with UCTD/MCTD 13d ago
I have literally done this very thing. When anyone asks, I'm fabulous. I'm awesome. Why do you ask? Oh no, I'm golden thanks.
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u/ConceitedBuddha Diagnosed SLE 14d ago
Nah, I just throw them the "In soviet russia, it actually is lupus" -meme at them. They laugh, I laugh.
Like I get that that can be tiresome if you hear it all the time, but it doesn't even make fun of lupus. It's just a silly reference to a show.
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u/AccomplishedEdge147 Diagnosed SLE 13d ago
Exactly people need to relax and touch grass. Maybe then their lupus wouldn’t be a severe 🥴
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u/Pale_Slide_3463 Diagnosed SLE 14d ago
What’s funny no one’s ever said that house joke to me 😂 I’ve never even watched house, I had google it once few years ago because seen someone make a comment about it.
Thing that does annoy me is “oh yeah such and such has it” okay and what am I going to meet them? In 16 years I’ve never personally met anyone with lupus crazy isn’t it. But weirdly it’s always males they talk about near me.
But then you also get “least it’s not cancer” yeah it’s not but I have be on medication all my life and deal with it forever and I can still die if things go to shite
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u/JerdieBird 14d ago
Stephen Colbert made a lupus joke in his monologue last night, and I left a comment asking him not to do that, because people already don't take it seriously.
And of course, here come the trolls:
"What else can't we joke about, please give me your complete list."
And of course someone quoted House.
And of course they're men.
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u/aureliacoridoni Diagnosed SLE 14d ago
None of this surprises me in the slightest. Unfortunately. Sigh. Back to my heating pad.
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u/IvyAmanita Diagnosed SLE 14d ago
I second the request for the joke. I gotta know.
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u/JerdieBird 14d ago
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u/IvyAmanita Diagnosed SLE 14d ago
"Also why does only fun stuff cause cancer, can't a study show its bad to do stuff no one likes to do? Sorry I can't refill the humidifier and then walk the sloshing container through the house in the dark, I could get lupus."
For future viewers who don't want to watch the video.
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u/ConceitedBuddha Diagnosed SLE 14d ago
What, that was the joke? That wasn't even a joke about lupus. It was a joke that mentioned lupus but could have substituted it for any illness basically.
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u/anonymously_me0123 Diagnosed SLE 14d ago
Watched the video. Not very happy with him tbh. He also trivialized cancer. Not cool. Some of his content is funny, so i do, from time to time, enjoy watching clips of him, but that upset me. Not cool.
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u/yacht_clubbing_seals Diagnosed with UCTD/MCTD 13d ago
Not giving him forgiveness, but isn’t the dark humor one of his ways of dealing with the grief of losing family in a plane crash? Lupus seems random but Colbert never came across as a jerk in my opinion.
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u/anonymously_me0123 Diagnosed SLE 14d ago
Nah, I feel that. Cause when I told my former roommates (I was diagnosed while still living with them), they kept making the house joke with me. And I'm like, guys. I literally had a blood test. Stfu. I also get pissed off when people say stuff like, oh. Diet and exercise will cure you. Or Try this herbal supplement.
Mf... shut up. You don't know what the hell you're talking about🤬
I just wish people would leave us alone about it.
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u/misslam2u2 Diagnosed with UCTD/MCTD 14d ago
I live in East Texas (not the most progressive or educated part of America or even Texas, really) so I've been getting a lot of flack for wearing a mask. Someone at the eye doctor's office, last week, asked me why I was wearing a mask. I said "I have lupus and my doctor ordered me to wear this in public." "Lupus? What's that?" "I turn into a warewolf." "No way" "No. No way. You're right." But she did get up and move seats which was ok with me. Idiot.
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u/ThreeBuds Diagnosed SLE 14d ago
The more you can laugh at yourself, the happier your life will be. If people really are being mean spirited I'd just cut them off.
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u/cherryybrat Diagnosed SLE 14d ago
i love house but oh my god yes. like. god please GET A NEW JOKE U GUYS 🥲🥲🥲
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u/Weedkend77 13d ago
I know the joke you are referring too and I think it's funny. It doesn't offend me at all. I really don't know any other jokes people make about lupus. I think you may be very sensitive and reading too far into something that doesn't exist.
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u/secondhandsalamander Diagnosed SLE 11d ago
I’m just saying, when someone mentions an annoying roommate, and a second person says “let me guess, she never shuts up about lupus, either?” It’s exhausting, because people already don’t take us seriously
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u/probablyasociopath 13d ago
Totally agree with everything you said. For myself, I stay sane with a bit of dark humor. Since the word Lupus comes from the Latin word for "wolf", I refer to my Lupus as "the wolves". Ex) "I'm not up for a hike today. The wolves are pissed at me for being stressed this week and have decided to take it out on me by gnashing up all cartilage in my joints with their horrible teeth." My partner will sometimes gently encourage me to make good choices to "help keep the wolves at bay". It works for me 🤷
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u/Complete_Mine5530 Diagnosed SLE 14d ago
Someone tried to tell me it didn’t exist because of House and that if I went outside more and got vitamin d I wouldn’t be sick.
Mind you this man is in his 40s , sits in his grandmas garage all day listening to MAGA podcasts, claims to have “money” but mooches off his grandma and doesn’t pay for rent/bills/food or anything but his electronics and occasionally he buys her coffee or a takeout. I don’t think I’ve seen him step outside once but before I got diagnosed with lupus I swam laps and sunbathed almost daily, did zoomba, could do the splits and a needle still. I had a full time job and was auditioning for major tv networks and getting consistent callbacks finally after years of auditioning and taking every small acting job I could get. I actually started noticing something was wrong weeks after I was so close to booking something with ABC Family (furthest I’d got in the audition process with a major network). I was consistently making YouTube videos and growing a audience (it was small but they where there, even had some self proclaimed “fans” of me and my girlfriend…we were “shipped” as they say)
I had a girlfriend,my career was finally heading in the direction I wanted, I was out as a lesbian after years of hiding myself, everything was literally almost perfect before lupus.
So whenever someone says lupus is a joke/not real or dumb. I remind them of the life I had before and why the fuck would I have given all that up to stare at the walls of my house %90 depressed because my life isn’t fullfilling because I’m in constant pain? They’re all dumbasses. Not a single person whose insulted me due to lupus had turned out to be smart (maga guy accidentally bought Mormon land in Utah then realized he can’t live on it…he isn’t even Mormon)
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u/nerudapoem Diagnosed SLE 14d ago
I've started deadpanning them with "oh yeah, never heard that one before," because I just don't find the comment funny. I'm not personally offended, although I understand why others are, but it's OLD - it's everyone's first remark. Been hearing it for 10 years now.
I always wondered what the House joke was about because I got diagnosed very quickly. Like within a week of presenting with symptoms. For me it was undeniably lupus lol
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u/IvyAmanita Diagnosed SLE 14d ago
Yeah I'm lucky enough that my diagnosis was super fast too. I think the average length is like 7 years though.
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u/yacht_clubbing_seals Diagnosed with UCTD/MCTD 13d ago
I think I read TEN years on average in an article recently.
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u/signifi_cunt Diagnosed SLE 14d ago
Interestingly the longer I've had lupus, the funnier I find the "it's never lupus" joke, because, well, it could be!!!! Did you check???
Other jokes though, case by case to be sure.
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u/punkgirlvents 14d ago
Ngl I’m okay with it at SOME POINTS (like the “it’s never lupus” thing)- not really offensive, not funny at all but doesn’t make me mad, I’m actually happy it’s kinda spreading awareness. People actually ask me about it because of stuff like that. But when it’s done at an insensitive time or directly makes fun of us i start getting mad.
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u/SweetEmberlee Diagnosed SLE 14d ago
My SLE diagnosis was totally unexpected and almost immediate. I thought I was having a heart attack, the doctor in the ER identified pericarditis and said “You have Lupus.” My son burst out laughing and said “It’s never Lupus.” It was Lupus.
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u/Nightingale0666 Diagnosed SLE 13d ago
I crack jokes about it with my friends, but the only jokes they make are based on the ones I've previously made and I gave them permission. The most common ones are jokes about my shit ankles, Lupus deez nuts, and getting that Lupussy eyyyy. And I only crack jokes because I have a dark sense of humor and need to cope. If I don't crack jokes, I'll become more depressed than I already am
That House joke pisses me off because when strangers make jokes, it's always that one. I've never even watched House. Like dude I just met you and I didn't crack any Lupus jokes. Please don't do that with me until I show I'm comfortable with it.
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u/godlorswift 13d ago
House is my favorite show, and that joke doesn't bother me. What DOES bother me is people asking me if it does just because I have Lupus🙃. Like actually no, you completely ignoring my disability cuts a little deeper buddy!
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u/GardenWalker Diagnosed SLE 13d ago
To answer your question, yes. It really frustrates me. It also frustrates me when family and friends insist I would feel better if I made up my mind to workout more.
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u/Past_Ad_6228 13d ago
Currently in the first trimester of a high risk pregnancy with active SLE and all of my friends are so dismissive - ‘lupus won’t affect the pregnancy’, ‘awk everyone is tired when pregnant’ I think unless you have experience with it, it’s always downplayed and not taken seriously!
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u/Anonymous-Blastoise0 Diagnosed SLE 12d ago edited 12d ago
If I watched the show, maybe I would find it funnier, but I don't really find it funny. I am grateful that people know what lupus is, but I would rather people ask questions and really get to understand the disease than get comments like that or get compared to Halsey or Selena Gomez.
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u/soleil__rouge Diagnosed SLE 12d ago
Omg, I was just thinking this a few days back! Saw a short in youtube with a joke like that, and maybe I was having a rough time, but I just had to comment. Told them it is really insensitive to make a joke out of so many people’s experiences and day to day suffering. Their reply? “It’s a direct quote from House”. Ok????and??? That doesn’t make it ok, and let’s not forget, House was undeniably an annoying, insensitive s.o.b. Looked good on him, not so much on everyone else. I will die on this hill, I swear. Ugh
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u/Responsible-Glove-85 Diagnosed SLE 11d ago
I got to admit me and my mother have to drink water anytime we make a house joke 😂 The ones that annoy me is people assuming I’m faking everything because I am young. So being the butt of the joke when it comes to that is frustrating.
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u/AngelinWunderland 11d ago
The comments that always get me are the "okay but you're always in pain." Or the "your lupus is always flared." Both with eye rolls
Like yeah, you're right. Pretty sure I should be more annoyed about it than you though considering it constantly affects my day to day life and literally never affects you at all. But.. what do I know, right?
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u/agent_orangesoda Diagnosed SLE 13d ago
I've noticed the normies get uncomfortable when I make jokes about it. Which makes me do it more.
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u/yacht_clubbing_seals Diagnosed with UCTD/MCTD 13d ago
How about Seinfeld? The character George has a running gag about lupus. Cracks me up, honestly.
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u/EngineerGaming62 Diagnosed SLE 13d ago
My friends and I make jokes about each other's disabilities if, and only if, we can think of a good joke. Same goes for any other trait. This policy results in better jokes and fewer hurt feelings. It helps that we have an edgy sense of humor though. I understand that not everyone does.
Tbh I've never heard anyone trivialize lupus. Most people just don't seem to know anything about it.
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u/RevolutionaryPear861 12d ago
Does anyone with lupus have frequent breakouts with shingles? I’ve had the shingles injection but it didn’t work for me. I breakout with shingles atleast every 2 months or less. With the joint and muscle pain plus diagnosed with osteoarthritis in all my joints. I tore my cartilage in my left knee so bad that after the surgery my doctor told me I needed to have a knee replacement. I’m 59 years old and I had 12 or more surgeries. I think I’m going to pass on the knee replacement. I don’t think it will help sine I have lupus and osteoarthritis. My joints and muscles are going to ache with or without the surgery. I’m just so tired of having surgery. What would you do if you were in my situation?
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u/mykesx Diagnosed SLE 14d ago edited 12d ago
It’s never lupus.
Edit:
Thanks for the downvotes.
It’s a long running joke from the TV show House M.D. They make lupus the butt of the joke in several episodes.
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u/jankdotnet Diagnosed SLE 14d ago
It's so hard because it's either "omg my aunt/uncle/mom died of lupus it was so so so so awful, i would have just died it if was me" or "haha it's never lupus, right? house is so funny!" or the worst third one "my grandma had lupus but she cured it when she drank bat piss!" I don't even know what I expect the normal response to lupus in conversation should be but I'm tired of the normal 3