It’s not very mature or appropriate for people to casually deny others’ health struggles based on age alone, but it’s so commonplace. Like it’s small talk.
Some people never develop awareness that their own experiences aren’t universal, I guess. Like ok, maybe their genes are perfect little age-appropriate angel genes, but mine aren’t. My connective tissue is like shitty old velcro at 32.
It's like when they see you with a cane and say something like: "I hope you get better soon."
"Thanks I won't! It's a lifelong condition that I have to manage." So freakin' awkward.
Lol, exactly.
There’s a regular customer at my work who ALWAYS asks whether my wrist is improving. I made the mistake of mentioning being in OT for my hands once and, although he means well, he can’t pick up the hint when I repeatedly say, “oh, thanks, but it’s the same. I have a connective tissue disorder, it’s normal.”
This past time, I finally asked him to please not worry about me, it’s part of a genetic condition that isn’t likely to improve and I’m alright. He says he mentions it every time to convey that he’s listening. Kind of funny
I don’t want him to feel bad at all, it’s just hard to keep repeating, “it’s the same, but that’s alright, thanks for your concern.” It’s NOT alright, it’s depressing as hell and every time someone asks if it’s better yet, I feel intense bitterness.
> they see you with a cane and say something like: "I hope you get better soon."
This is why I use "spoonie blessings":
- "I hope you have a low symptom day soon."
- "I hope you get some good rest soon."
- "I hope tomorrow is gentler on you."
Like, we can wish someone well without trying to pretend their struggles don't exist.
I've seriously lost my appetite this year and have lost 30 lbs without trying at all. I'm just nauseous and in pain all the time, so eating is not a priority. Everyone keeps telling me how good I look. It's like, gee thanks, never felt worse.
Ugh, it’s tonedeaf of people to comment on weight like that. I used to be chronically underweight for similar reasons, plus a mild case of ARFID—food was always a chore and I was super depressed. I don’t eat much at all when I’m low and apathetic. People loved to tell me how lucky I was to be so skinny, though.
Then they’d turn around and shame me for being too skinny, not eating enough, looking unhealthy, not wearing makeup, lol. Can’t win, people just never shut up
You'll either hear "You're too young for that" in childhood or "You're old, what did you expect?" Either way it comes from that person's personal experience not yours. Throw it out the window and go on.
i hate it when people say stuff like this to me as well. like “wait till you’re older, then you’ll know what real pain feels like” or just assuming i can’t possibly be in pain like they are. pain and connective tissue wise, im about even with people twice my age. but there’s been a couple cool older people who i can talk to about joint issues who don’t try to gatekeep my experiences. but they’re rare
i hate this. i’m 21 and have arthritis and chronic vein insufficiency. doctors love pointing out how thIs dOeSnT hAppEn tO yOunG pEoPlE but well apparently it DOES! one doctor even refused to take me seriously because apparently you can’t have hip issues if you’re under 50.
can doctors just stop commenting their personal thoughts and do the damn job
Unfortunately, no one is too young to have pain. Especially from something we’ve had from before we were even born in this case.
Instead of saying “you’re too young for this.” I wish people would say something a little more like “I’m sorry that you’re not getting to enjoy your younger years as much as I did.”
I hate this. Yes i know im “too young” to have needed now 9 reconstructive ankle surgeries. And wrist surgery. Leave me alone assholes with lucky genes.
I’m pretty sure I’m post menopause (I had an endometrial ablation in my 30s, so I haven’t had a period in decades!). The only symptom I’ve had is *great joy*. Oh and being hit on by really young guys.
Not every woman has the terrible symptoms of peri and post menopause! Everyone in my family had HSD and easy menopause; correlation isn’t causation but *maybe?* 🤨 Surely there’s gotta be something good about this crap! Okay, very low blood pressure. Besides that, bc always having a headache, being tired, and blacking out if I stand up too fast isn’t that awesome 😆
I got so much "peri/menopause" bs when I was trying to figure out wtf was wrong with me in the early years of this health odyssey. Menopause isn't a disease! In fact it was the best thing that ever happened to me and so easy! I'm with you on the Great Joy-- I don't miss the extra symptoms I used to get at menses AND ovulation.
So glad you’re in the club!! I don’t want to happy dance too much in case I’m talking to someone less fortunate - I know it can suck, but I got *aaaaaaaalllllll* that suckage out of the way while fertile 🤮 I had severe menorrhagia to anemia, burst ovarian cysts, blah blah blah. I got sterilized, then had an endometrial ablation … and peace! I still had mittelschmertz for a while but that’s gone … just peace … well, except for the attractive young men who now find me irresistible 🤣 I wish I were kidding! I have a gorgeous 30 year old bf who’s also fun to talk to which is good bc he won’t get off my lawn 🤦♀️
A coworker said that to me and I just hit her with "technically I'm the majority of my way through my life cycle due to my illness so I'm actually pretty old for someone with my conditions" let me tell you she turned ghostly white and apologized profusely. Jokes on her she'll probably die before I will. Sometimes you just gotta make em feel bad for being so horribly uninformed.
Yep. I agree, their ignorance deserves any ploy even if it’s a mix of deception. If that’s the easiest way for them to respond and be on the same page; so be it!! (:
Apparently with age begets wisdom, and whomever told you that isn’t very supportive, educated, or mature. I’m sorry you have to go through that- I’m 40, and I did the same things. And I pay the price for living my life without guardrails now. I’ve got plenty of surgical scars from it and I can pull off looking somewhat “normal” for a few hours at a time. But to me? I didn’t know, I lived my life how I wanted to live it, and now I know. That’s it. 🤷🏽♀️.
You’re an in-betweener, same as me. And many others who didn’t get the new protocols of later generations. Because we didn’t know. And now we do.
I have cEDS, and my lack of wrinkles and stretch marks makes me look like I’m mid to late 20s. So I am a bit snarky when I’m frustrated, and will often ask those who throw stones at my life if they realize: 1. I’m 40
and
2. If I should start “preventative cosmetic Botox” like everyone else in their late 20s/early 30s.
… Or “am I too young for it”? (I’ve never had cosmetic Botox or fillers. Just pain management organized medical Botox -and my jaw, shoulders, neck, and scalp love it - but it does nothing for my supposed future 11s and wrinkles 😂)
So … perhaps not snarky, but a reality question in exchange.
Sometimes having an invisible disability is hard to understand. Same with the higher pain tolerance, and love of life.
Find a way to make a simple statement to make it real and understandable- so it hits home for them. And leave it at that.
Sending lots of positive thoughts and energy
They won't replace my knees bc "you're too young"
I have zero cartilage. I have severe arthritis in all the places you can have arthritis in my knees.
But I'm "too young."
"You're too young for this" but it's a genetic condition lmao meaning a lot of us were born with it?? so at what point are we "old enough" to be disabled? it's so aggravating
Had an elderly patient at the clinic I work at tell me "it's such a pity, that you're gimpy at such a young age". I just looked at them with my mouth open, and handed them their paperwork without speaking. I could not that day
I get the impression they are trying to frame it as a compliment somehow. I assume because they’re calling you young but it’s so invalidating. Like, how am I supposed to know what 45yo joints and ligaments feel like at 15yo (back then)? I just knew my friends didn’t have pain like me. Screw the backhanded compliment and give me a some PT or something.
I can relate. I was 19 and I started walking around with a cane just to try and help with the pain. I can’t help the agony I’m in, I wish people would listen. No one WANTS to be in pain.
It’s not very mature or appropriate for people to casually deny others’ health struggles based on age alone, but it’s so commonplace. Like it’s small talk. Some people never develop awareness that their own experiences aren’t universal, I guess. Like ok, maybe their genes are perfect little age-appropriate angel genes, but mine aren’t. My connective tissue is like shitty old velcro at 32.
It's like when they see you with a cane and say something like: "I hope you get better soon." "Thanks I won't! It's a lifelong condition that I have to manage." So freakin' awkward.
Lol, exactly. There’s a regular customer at my work who ALWAYS asks whether my wrist is improving. I made the mistake of mentioning being in OT for my hands once and, although he means well, he can’t pick up the hint when I repeatedly say, “oh, thanks, but it’s the same. I have a connective tissue disorder, it’s normal.” This past time, I finally asked him to please not worry about me, it’s part of a genetic condition that isn’t likely to improve and I’m alright. He says he mentions it every time to convey that he’s listening. Kind of funny I don’t want him to feel bad at all, it’s just hard to keep repeating, “it’s the same, but that’s alright, thanks for your concern.” It’s NOT alright, it’s depressing as hell and every time someone asks if it’s better yet, I feel intense bitterness.
I personally love doing that because it makes people feel bad or awkward and hopefully it's enough for them to become a little more informed
> they see you with a cane and say something like: "I hope you get better soon." This is why I use "spoonie blessings": - "I hope you have a low symptom day soon." - "I hope you get some good rest soon." - "I hope tomorrow is gentler on you." Like, we can wish someone well without trying to pretend their struggles don't exist.
I've seriously lost my appetite this year and have lost 30 lbs without trying at all. I'm just nauseous and in pain all the time, so eating is not a priority. Everyone keeps telling me how good I look. It's like, gee thanks, never felt worse.
Ugh, it’s tonedeaf of people to comment on weight like that. I used to be chronically underweight for similar reasons, plus a mild case of ARFID—food was always a chore and I was super depressed. I don’t eat much at all when I’m low and apathetic. People loved to tell me how lucky I was to be so skinny, though. Then they’d turn around and shame me for being too skinny, not eating enough, looking unhealthy, not wearing makeup, lol. Can’t win, people just never shut up
Every single time my SOs mom sees me she comments on how much weight I've lost and how good I look and every time I say "thanks I can't eat"
my bones correspond to an 82 year old man who worked manual labour his whole life
*creaks in solidarity*
You'll either hear "You're too young for that" in childhood or "You're old, what did you expect?" Either way it comes from that person's personal experience not yours. Throw it out the window and go on.
i hate it when people say stuff like this to me as well. like “wait till you’re older, then you’ll know what real pain feels like” or just assuming i can’t possibly be in pain like they are. pain and connective tissue wise, im about even with people twice my age. but there’s been a couple cool older people who i can talk to about joint issues who don’t try to gatekeep my experiences. but they’re rare
i hate this. i’m 21 and have arthritis and chronic vein insufficiency. doctors love pointing out how thIs dOeSnT hAppEn tO yOunG pEoPlE but well apparently it DOES! one doctor even refused to take me seriously because apparently you can’t have hip issues if you’re under 50. can doctors just stop commenting their personal thoughts and do the damn job
You can't have issues over 50, either I'm not sure we ever reach the magical age of legitimately ill.
Unfortunately, no one is too young to have pain. Especially from something we’ve had from before we were even born in this case. Instead of saying “you’re too young for this.” I wish people would say something a little more like “I’m sorry that you’re not getting to enjoy your younger years as much as I did.”
“I’m sorry you’re not getting to live out your younger years as you had envisioned.”
oh man me too lol. Like sorry I didnt know I had this condition until it was too late! damn
I hate this. Yes i know im “too young” to have needed now 9 reconstructive ankle surgeries. And wrist surgery. Leave me alone assholes with lucky genes.
Hell I’m 59 and I’m too young and/or too old for this shit!!
And the inevitable "Oh it's just menopause." M'Kay.
I’m pretty sure I’m post menopause (I had an endometrial ablation in my 30s, so I haven’t had a period in decades!). The only symptom I’ve had is *great joy*. Oh and being hit on by really young guys. Not every woman has the terrible symptoms of peri and post menopause! Everyone in my family had HSD and easy menopause; correlation isn’t causation but *maybe?* 🤨 Surely there’s gotta be something good about this crap! Okay, very low blood pressure. Besides that, bc always having a headache, being tired, and blacking out if I stand up too fast isn’t that awesome 😆
I got so much "peri/menopause" bs when I was trying to figure out wtf was wrong with me in the early years of this health odyssey. Menopause isn't a disease! In fact it was the best thing that ever happened to me and so easy! I'm with you on the Great Joy-- I don't miss the extra symptoms I used to get at menses AND ovulation.
So glad you’re in the club!! I don’t want to happy dance too much in case I’m talking to someone less fortunate - I know it can suck, but I got *aaaaaaaalllllll* that suckage out of the way while fertile 🤮 I had severe menorrhagia to anemia, burst ovarian cysts, blah blah blah. I got sterilized, then had an endometrial ablation … and peace! I still had mittelschmertz for a while but that’s gone … just peace … well, except for the attractive young men who now find me irresistible 🤣 I wish I were kidding! I have a gorgeous 30 year old bf who’s also fun to talk to which is good bc he won’t get off my lawn 🤦♀️
🤣👑
A coworker said that to me and I just hit her with "technically I'm the majority of my way through my life cycle due to my illness so I'm actually pretty old for someone with my conditions" let me tell you she turned ghostly white and apologized profusely. Jokes on her she'll probably die before I will. Sometimes you just gotta make em feel bad for being so horribly uninformed.
Yep. I agree, their ignorance deserves any ploy even if it’s a mix of deception. If that’s the easiest way for them to respond and be on the same page; so be it!! (:
“You’d think so. You’d also think at your age you’d know better than to presume you know what someone else’s life experience is but here we are”.
Apparently with age begets wisdom, and whomever told you that isn’t very supportive, educated, or mature. I’m sorry you have to go through that- I’m 40, and I did the same things. And I pay the price for living my life without guardrails now. I’ve got plenty of surgical scars from it and I can pull off looking somewhat “normal” for a few hours at a time. But to me? I didn’t know, I lived my life how I wanted to live it, and now I know. That’s it. 🤷🏽♀️. You’re an in-betweener, same as me. And many others who didn’t get the new protocols of later generations. Because we didn’t know. And now we do. I have cEDS, and my lack of wrinkles and stretch marks makes me look like I’m mid to late 20s. So I am a bit snarky when I’m frustrated, and will often ask those who throw stones at my life if they realize: 1. I’m 40 and 2. If I should start “preventative cosmetic Botox” like everyone else in their late 20s/early 30s. … Or “am I too young for it”? (I’ve never had cosmetic Botox or fillers. Just pain management organized medical Botox -and my jaw, shoulders, neck, and scalp love it - but it does nothing for my supposed future 11s and wrinkles 😂) So … perhaps not snarky, but a reality question in exchange. Sometimes having an invisible disability is hard to understand. Same with the higher pain tolerance, and love of life. Find a way to make a simple statement to make it real and understandable- so it hits home for them. And leave it at that. Sending lots of positive thoughts and energy
They won't replace my knees bc "you're too young" I have zero cartilage. I have severe arthritis in all the places you can have arthritis in my knees. But I'm "too young."
"You're too young for this" but it's a genetic condition lmao meaning a lot of us were born with it?? so at what point are we "old enough" to be disabled? it's so aggravating
You're too young for that! Oh, well the disability fairy did not ask for my id or birth date. Sucks, huh.
Had an elderly patient at the clinic I work at tell me "it's such a pity, that you're gimpy at such a young age". I just looked at them with my mouth open, and handed them their paperwork without speaking. I could not that day
I get the impression they are trying to frame it as a compliment somehow. I assume because they’re calling you young but it’s so invalidating. Like, how am I supposed to know what 45yo joints and ligaments feel like at 15yo (back then)? I just knew my friends didn’t have pain like me. Screw the backhanded compliment and give me a some PT or something.
That phrase is so fucked. I had doctors tell me that when I had spinal cord damage and lost the ability (thankfully only temporarily) to walk.
I can relate. I was 19 and I started walking around with a cane just to try and help with the pain. I can’t help the agony I’m in, I wish people would listen. No one WANTS to be in pain.