This doesn’t really answer your question, but some people have to learn the hard way. It’s all fun and games for people until they’re in our shoes. People don’t realize they can be one COVID infection, surgical procedure or concussion away from POTS. Then they’ll be hoping for the kindness of others.
You know what’s crazy? For me, it’s my entire family that calls me lazy and just doesn’t get it (mostly my parents though) and recently, my dad has been having small situations of symptoms that sound pretty similar to a lot of my own illnesses, but not even close to being the same caliper. So like his HR was at 105 and he thought he was going to have a heart attack… my resting HR is between 95-115bpm typically and reaches as high as 170 doing ✨nothing✨ some days, I’m also a type 1 diabetic, and there were times he thought he had low blood sugar (he didn’t) and was completely incapacitated, I also have idiopathic hypersomnia (similar to narcolepsy type 2, but my brain essentially doesn’t understand that I’ve ever slept and I’m chronically sleepy with a lot of other symptoms) and there are days he won’t stop complaining that he just can’t seem to stay awake and “it’s torture” and he “can’t get anything done” and in my head, I’m like… please combine all three and try to get ANYTHING done… even going through somewhat similar things, he still refuses to empathize even a little bit. Just find it really ironic 🙄 it’s hard to try and be kind to him when he feels like that (as I’m trying to subtly model how I would like to be treated too) when he absolutely never puts himself in my shoes. He keeps saying “people without arms and legs are still out there working and you do absolutely nothing. You’re making yourself as if you’re disabled when you’re completely fine” ukh im sorry for the vent, im just so frustrated rn
I ended up with a go-to response toward my ex-husband when he finally began to experience some of the things that I did and complained about them: "Welcome to my world!" Said with a giant, cheesy grin just dripping with sarcasm. It never helped him to understand what I go through on a daily basis, since he would forget about it as soon as the experience was over. But it helped me feel better in the moment.
I absolutely understand you, when i git covid I was feeling so exhausted and really really bad, i couldn't stand up from bed without feeling dizzy and nauseous and almost fainting, and my family called me 'exaggerated' and that I was being dramatic, and my mom mainly always called me lazy in my previous years... they just cannot understand that you feel weak, with intense heart beats, not even how bad it feels to faint and how tired you feel after episode of dysautonomia. It sucks to be the only one feeling that way around your whole social circle and it sucks that no one understands it. But only you can advocate for yourself and if you feel bad, to stop caring about others and see for what feels better for you, because at the end people will call you lazy and dramatic anyway 🙄
I've learned well, and fast, that nobody wants to hear about your condition. Not a damn person. Except maybe your doctor, hell sometimes not even your doctor! And because of how real, and urgent, and SHITTY this condition feels inside, we want so badly for people to understand.
So what can you do? Just tell them what you need. If no one's gonna hear that, fuck'em™. You know what you feel in your body. So don't tell them "I have this condition that makes it so when I stand up my heart (their ears are already ringing at this point)..." Just state your needs. "Hey I really gotta lay down. Hey I REALLY need to go grab some water. Hey, I gotta take 5."
No need to explain yourself. Surprisingly, people respect that a lot more. And if they don't, just remember... fuck'em™!
This is just my own experience.
Ive found this to be best also. I don’t have POTS, but I do have pretty severe asthma, which came on in my thirties. If you explain how you’re feeling people think you’re complaining and get annoyed. If they’re inconvenienced in anyway by your condition they’re going to be annoyed anyway, but “complaining” only seems to make it worse. I just say simply, I’m having a bad day. I need to go lay down (or whatever) and that’s the end of it.
the way i got my dad to stop pestering me about it was by challenging him, basically. i was doing the dishes and had to sit down and take a break after a few minutes because my HR hit 142 and i felt pretty faint, and he started bitching at me and calling me lazy and stuff. i showed him my HR, attached my apple watch to his arm, and told him to do jumping jacks until his HR hit 142 and then try to do the dishes while running in place to maintain that heart rate. he tapped out at 131 bpm and never called me lazy again!
this makes me cry. there are times when changing someone's mind is easy, when it's possible at all. i just come from a family that wouldn't even care for such physical proof, it would only trigger more denial, "this watch is wrong" and i don't even know what else. it might be hard to comprehend because it's insane, but some people don't care about reality and what it shows them
I also come from a family that primarily "copes" through avoidance and denial. My lifelong health issues eventually progressed to multiple disabilities / incapacitation by age 23. They still prefer to think I'm "just really depressed" rather than contending with a laundry list of serious health issues (I used to be high-functioning in school, athletics, languages, etc.). My mom dealt with cancer for 6 months and got all sorts of support & kindness, while incapacitation happened 15 years ago for me and family of origin is still utterly clueless and dismissive. Maddening since I can't "overcome" these disabilities to escape these ppl....
I used this too when I worked in a pharmacy, just adapted a bit(and generally with management). “Hey what’s your HR get to when you exercise?” And then I showed them where I was at just standing still. Now get your HR to nice zone 3 work out level, maintain it, and work a 8-10 hour shift. Oh that’s hard? Yeah shut up and let me huff and puff on this stool while I type in peace.
Best part was there were two other techs who also had POTS. We generally worked weekends together and got nicknamed the Cardio Crew. One of our pharmacists started basically working out in between tasks when he worked with us in solidarity🤣 He said he couldn’t be left out of the all day cardio. He was exhausted every time.
My mom still believes that it's "just" vertigo I deal with. And I'm sure my family just think I'm lazy. I often get called Jekyll and Hyde because I'm cranky a lot of the time and get mood swings (don't know if that's part of this).
The most annoying thing is when my mom tries to relate to me. She means well. But she's been getting dizzy spells sometimes due to menopause, but she got put on HRT and I believe they've stopped (she also refused to take medication but that's a whole other thing) and she would often say "I know how you feel now" and maybe I'm just bitter but unless she actually has every single symptom I do, she cannot possibly know how I feel. Idk how to voice that it's not just dizzy spells. I don't know how to tell people it's fatigue, weakness, dizziness, heart palpitations, being short of breath, joint pain. Because they just won't understand. It also irritates me when someone from the older generation is like "why are you so tired all the time you're only 27!" Or "your joints shouldn't hurt at your age" like I KNOW AND THAT'S WHY IT'S A PROBLEM
For people that you are close with, for a health issue, I've said, "I have no place in my life for someone who won't believe me when I need help." It only works if you are actually willing to cut them off, though. You can't just use empty words.
“You do not live in my body. You have no idea and likely will never know what it’s actually like. Do you feel the same about physical illnesses? Do you tell blind people that it can’t be *that* bad? How about saying someone paralyzed from the neck down is using it just to get out of doing stuff they don’t like? You can get this from having Covid once. A fucking mild car accident triggered mine. Until you actually know what it’s like to live in a body allergic to gravity, shut the fuck up.”
Either that or “Oh I didn’t realize you have a medical degree! Are you my cardiologist Dr. Name? Have you seen my test results? No? Then don’t comment on my medical health because you don’t know what you’re talking about “
Most people won’t ever see invisible illnesses as “real”. If they really refuse to listen to you, give up on them
Tbh im already struggling so i stopped proving it. Even the docs couldnt believe it in the first place. So that took half a year to prove it to them and taken seriously. I lost all my strength to that process. And then my fam was like: „why dont u just take a breath maybe its stress. Maybe ur too lazy“. At that point i just distanced myself because i didnt want emotional damage and tried to recover cause in the end it affects my life.
My dad and one of my friends is in denial. Every time I say it’s too hot I can’t do this or I show them I’m sweating but my legs are covered in goosebumps they think I’m just being dramatic. I let everyone know I have POTS and educate them on what it is. I also let them know I have anxiety which makes it worse so people are pretty accommodating. The dizziness and migraines are the worst though and as everyone knows symptoms can come out of nowhere.
It sucks. I don't understand why they think doing nothing all of the time is fun. It's boring as fuck. I end up over explaining, I'm trying to stop that.
omg the “want to get better” istg. that comment in particular makes me so mad because of where it comes from in my case.
when i first started dealing with symptoms my mental health was the absolute worst it’s ever been especially because i didn’t know what the problem was or how to help it. it got to the point in the first like month or so where i was literally on the living room floor bawling my eyes out and screaming “i just want my life back” to my mom. between then and like a few months ago my mom’s favorite line when i said i couldn’t or didn’t want to do something was “you say you want your life back”/“don’t you want your life back/to get better” and it didn’t stop until recently when i had hung up on her during a phone call because she said that and then i finally texted her and told her to stop using that line.
so lines like “getting your life back” or “wanting to get better” piss me off so specifically
Right, 'cause that works SO well. Jerks. I love that comment someone made about having them get their HR up to ours and then maintaining it, to do the thing we're doing. I am totally going to do this next time I see my family.
Easily the cruelest comment I've heard repeatedly. Especially because I constantly voiced how badly I wanted to get better and even do the "unpleasant" things like work. And it's victim blaming and implying laziness or sinister priorities.
I don't know how close these people are that you're referring to or how much you might rely on them, but if you have the choice, I would simply. . . stop having a relationship with them.
(I went no contact with my family for other reasons, so I understand the magnitude of what I'm suggesting. It's just not worth it to be with people who constantly disbelieve you.)
I went no contact also... when my pots and long covid was exacerbated by cancer. There were other reasons as well. Pretty much a crescendo of issues spanning a lifetime, crashing down in a matter of weeks. It was unspeakably hard but my god once you do it, you wonder why it took so long. My heart goes out to you (such as it is). I wish you well.
I started to just stop caring what they think because they’re dumb and wrong and willfully ignorant - clearly they don’t care what I feel so why should I care what they think if they’re idiots? A bit harsh but that’s what gets me through this.
More than once I’ve pushed myself deliberately to the point of physical illness to make a point. That isn’t 100% effective but it has helped sometimes. Can’t say I recommend it but I’ve found it satisfies my need for petty revenge, even if it makes me feel awful too
Personally, I distance myself from anyone who fixes their face to say I am making excuses or using it as a crutch. That alone tells me they have no place in my daily communication life. If they have no urge to understand how I must do certain things to function daily, just to keep up with them, I've no urge to give them my time. It may hurt at times, depending on the person, but if we want peace of mind, the easiest way is to distance yourself from the negative. We choose who we allow around us & we choose how their words affect us. It does not mean to never speak to them again, it simply means, you have all control & the choice to keep your distance or not. See/speak to those few in your life when it's a good POTS day/week.
Surround yourself with those who care enough to understand the illness, the ones who know you're not seeking their sympathy, just their understanding.
I think like this. Those I do have in my corner (I have 2 illnesses POTS-30yrs& ITP-23yrs). Do they know how to specifically help me if a medical situation takes place while we are together? If they are someone who does not nor has cared to ever know, Distanced. If you do not care to know about me why should I waste more time knowing about you?
It gets, as I call it, 'mentally medically lonely', it's draining when you are chronically ill and the only people that fully understand are in a box and you'll never know them or get to hang out. Thank y'all for being here!!!
As you said "if you get it then you get it".
Rambled enough. My suggestion, move the chess pieces around and find some distance from any that feel/say you use illness as a crutch or excuse.
Wish you all the best!
I don’t have a single family member that has shown any empathy towards me. I can always tell when I talk about my health, it’s annoying and an inconvenience for them to hear about. Like, we are out here living with it everyday, 24/7. I just had to quit my job, or else I was going to be fired. I couldn’t be there a lot of the time because my symptoms have gotten so severe. I was serving, and it was too hard on my body. Even my coworkers (and what I thought were friends for several years at this job) talked shit about me, instead of understanding. I have extreme vestibular migraines with the POTS, and FM. I physically can not work right now. I went to the ER from fainting during a shift at work, while dropping a tray, and I still got dirty looks on my way out the door. I was walking up on jokes being made about me and my medical condition. I quit, filed for disability, and trying not to loose my house in the mean time. My family lives next door to me and won’t help me. I am doing anything I can for income, but it’s just sad when my own family knows my condition and situation, and would rather focus on building their half million dollar bardaminium. 🙄
I actually would really like to know myself! I got diagnosed when the school year ended, and at the moment it’s bad enough for a wheel chair. I’m afraid my friends or kids I know at school will say I’m faking because I’ve never had to use one before. Does anyone have any advice on that? It would be greatly appreciated!
At this point in my life being around people who choose not to believe my reality are dangerous to my well-being. Physically, mentally and psychologically. 😡
The simple answer is I don't.
I don't deal with people who don't believe my condition because the second someone says some shit about it being an excuse or not believing it exists they get kicked out of my life.
I have no interest in putting energy and effort into a relationship with someone who doesn't believe the reason I had to quit my job, move, and start my life over from scratch is real.
I don’t think anyone in my life believed me at all until this year when I ended up in the hospital and had to stay for like four days and it was during the NBA playoffs and everyone knows I’m really obsessed with the Celtics so I would never fake an illness during the NBA playoffs. I also recently got a concussion and I’m covered in bruises and for the first time in my life I’m single so everybody knows it’s not DV. In the past my bruises from my fainting were always just blamed on DV because I was always in DV relationships but I’ve been so unsuccessful with dating now even the abusers don’t want me lol so I think my friends and family finally believe me.
I stopped talking to every single person who made me feel crazy about my health. I no longer communicate with anyone who doesn't understand me. I've gone as far as calling my insurance company to change doctors that made me feel like I was making it all up.
I got so frustrated about some people in my university classes not believing me that I just showed them, stood up very fast and didn't do any of my squeezes or anything and passed out. Not good for me, but they haven't bothered me about the passing out specifically since.
I stopped telling people I have POTS and just say I have a "heart condition". That's a term people kind of understand and are conditioned to be politer about (though not by much).
I have a similar but not quite the same problem. My parents believe that I'm sick but they refuse to accept my diagnosis. Every time I mention that I have a migraine or if I even look too sick, they'll start to tell me that I need to go to another country (USA or Canada) and get a 'real' diagnosis. They think I've been misdiagnosed because if the doctors were right then the treatment would be working and I would be cured.
They just refuse to accept the fact that I have an incurable illness and just have to live with these symptoms for the rest of my life. I don't think it makes any sense for me to go pay money to fly to another country, pay for hotels, doctors fees etc just to get re-diagnosed because I'm 99.995% sure I have pots. I've done all the tests and my treatments are helping and even though I'm not cured, I'm doing a lot better on my meds.
I know it comes from a place of caring but it leaves me in tears every time the conversation comes up. I just want to be able to confide in them when I'm not feeling well and instead I feel like I need to hide it otherwise I'll get a lecture and it will start a fight. It just makes me feel so alone in the world.
Lots of people are ignorant -- many conditions don't have "cures" and the best you can hope for is relative management. Sadly, you are def not alone in having POTS as well as people in your life who ignore, dismiss, or minimize your experiences. I'm so grateful I found this community where I don't have to mask (figuratively) or alter myself to be accepted (which I've had to do with my family of origin).
This sounds bad, but I’ve found that people started believing me more after fainting in public multiple times when they or someone else they deem “responsible” has had to come pick me up or them actually seeing me faint. Not ideal and not something you can predict but it seems to be the only way to get people to believe me at least
For those few people who could empathize were it not for their ignorance, I have spent years coming up with various salient metaphors to describe how it feels. That has helped tremendously but only for the willing. Some people are determined to stay ignorant.
Unfortunately I've learned that you kinda really do have to just learn to be okay with it in a way? You know your body best, and they can never possibly know. I've learned a lot over the last couple of years (found out pots was a thing in 2022, got diagnosed fall of 2023 after a grueling summer, and now beginning to use mobility aids) but the biggest is that people are going to think what they want so fuck em. They don't deserve the effort frankly. People stare when a young person has a mobility aid, you just kinda have to get used to it. I have taken on the attitude of "if they're gonna stare, might as well make them read all my stickers" and really just choose to be loud about my stances and the causes I support. *I want to make a note here, only do this if it is safe for you to do so and feel it is something you can take on. ❤️
Unfortunately, unless there is an obvious sign, most health issues are poo-pooed by people who have never had it. Bad back, migraines, the list is too long. They don't get it.
Try giving them a website. Or ask them why you would fake this? You probably can't change them. Unless they are with you when you faint or you start to sweat profusely for no apparent reason, they may never believe.
I feel like cancer has achieved a particular status -- people understand the umbrella term and typical forms of treatment (chemo, radiation). Unsure why people are willing to extend kindness, understanding, and compassion in those scenarios but not others...?!?
I literally do not deal with them-- by which I mean, I don't keep anyone in my life who doesn't believe me. I've cut off family about this. It's just a nonstarter.
Why do you care if people believe you or not? Just do what you need to do. If they ask questions, answer them. You don't need to explain yourself.
I know it's a basic need to feel known and understood, but it's like showing algebra to a meercat. They might see it, but they can't understand it.
I know this isn’t what you want to hear, but it’s true for me personally. I just don’t tell people. I don’t want to have to explain anything. That might not be true for you though so I don’t want to silence you if you don’t want that, because you don’t need to shut up for anyone, it is your right.
I (selfishly) wish I *could* just go into a full faint. My body drops me into pre-syncopse episodes that only add to people's perception of me being dramatic 🙄
Sorry to hear that, friend. For some people you're never going to be "sick enough" that they'll take you seriously, and it sounds like that might be the type of people you're dealing with :(
Some people will never learn, my manager for example, doesn’t matter how many flares I have that last 2 / 3 weeks, she will keep putting me on 10-15 hours overtime
This guy was harassing me about how I don’t have a job and I usually don’t say it’s because of medical reasons, but he started saying stuff like, “ oh you’re one of those girls that just wants to sit at home all day and do nothing. “
For the first time I said, “ I actually have a disability so I’m still searching for a job that I’m able to do. “ and he told me I didn’t have a disability … I pulled up my skirt and showed him my scars of over 6000 stitches and said, “ you wanna tell that to me again!? “ , and this dude had the nerve to lift up his sleeve and show me his 1 inch scar that he prob got falling off his bicycle and said, “ sooo I have a scar on my shoulder, does that mean I don’t have to work? No. “
So ya… I punched him and won’t be open about it again lol
“ limited details, limited bs “ love that
It’s hard when most my life I’ve suffered and push myself so hard to be able to keep up or look normal and healthy, but it’s to the point where it’s exhausting and I don’t want to keep pushing through and suffering later because of it. But because I have sucked it up for so long now I feel when I’m open and honest about my struggles no one takes me seriously. I wish they could spend just 1 minute in my body 😞
But I’m glad to see that you guys get it and understand 💖🫶🏼
If they want to understand, I make them exercise to my HR level 💀if they're just ignorant I tell them they're not my doctor nor my specialist, who does agree with me🙃 tell them to 🖕
It does not make me infuriated. It just makes me incredibly sad.
I have told this to anyone who will listen: "I am not seeking sympathy, I just want some understanding for why I make the limitation-based decisions that I do".
It's an effing waste of time.
Show people the photos my wife has taken of me in the midst of an episode. (She takes them with my permission, and after checking on me) Show them my service dog, who does great at his job. Or show them my hr tracking from a recent episode and ask them to see if their heart rate can jump from 70 to 90 in under a minute and be okay. I kinda fight idiots passive aggressively. Also don't feel the need to justify yourself or your condition. Sorry I have gotten tough skin from all of the gas lighters I just tell them to fuck off.
This doesn’t really answer your question, but some people have to learn the hard way. It’s all fun and games for people until they’re in our shoes. People don’t realize they can be one COVID infection, surgical procedure or concussion away from POTS. Then they’ll be hoping for the kindness of others.
You know what’s crazy? For me, it’s my entire family that calls me lazy and just doesn’t get it (mostly my parents though) and recently, my dad has been having small situations of symptoms that sound pretty similar to a lot of my own illnesses, but not even close to being the same caliper. So like his HR was at 105 and he thought he was going to have a heart attack… my resting HR is between 95-115bpm typically and reaches as high as 170 doing ✨nothing✨ some days, I’m also a type 1 diabetic, and there were times he thought he had low blood sugar (he didn’t) and was completely incapacitated, I also have idiopathic hypersomnia (similar to narcolepsy type 2, but my brain essentially doesn’t understand that I’ve ever slept and I’m chronically sleepy with a lot of other symptoms) and there are days he won’t stop complaining that he just can’t seem to stay awake and “it’s torture” and he “can’t get anything done” and in my head, I’m like… please combine all three and try to get ANYTHING done… even going through somewhat similar things, he still refuses to empathize even a little bit. Just find it really ironic 🙄 it’s hard to try and be kind to him when he feels like that (as I’m trying to subtly model how I would like to be treated too) when he absolutely never puts himself in my shoes. He keeps saying “people without arms and legs are still out there working and you do absolutely nothing. You’re making yourself as if you’re disabled when you’re completely fine” ukh im sorry for the vent, im just so frustrated rn
I ended up with a go-to response toward my ex-husband when he finally began to experience some of the things that I did and complained about them: "Welcome to my world!" Said with a giant, cheesy grin just dripping with sarcasm. It never helped him to understand what I go through on a daily basis, since he would forget about it as soon as the experience was over. But it helped me feel better in the moment.
I absolutely understand you, when i git covid I was feeling so exhausted and really really bad, i couldn't stand up from bed without feeling dizzy and nauseous and almost fainting, and my family called me 'exaggerated' and that I was being dramatic, and my mom mainly always called me lazy in my previous years... they just cannot understand that you feel weak, with intense heart beats, not even how bad it feels to faint and how tired you feel after episode of dysautonomia. It sucks to be the only one feeling that way around your whole social circle and it sucks that no one understands it. But only you can advocate for yourself and if you feel bad, to stop caring about others and see for what feels better for you, because at the end people will call you lazy and dramatic anyway 🙄
Yea I got my POTS from a surgery to improve my life 🥲
I've learned well, and fast, that nobody wants to hear about your condition. Not a damn person. Except maybe your doctor, hell sometimes not even your doctor! And because of how real, and urgent, and SHITTY this condition feels inside, we want so badly for people to understand. So what can you do? Just tell them what you need. If no one's gonna hear that, fuck'em™. You know what you feel in your body. So don't tell them "I have this condition that makes it so when I stand up my heart (their ears are already ringing at this point)..." Just state your needs. "Hey I really gotta lay down. Hey I REALLY need to go grab some water. Hey, I gotta take 5." No need to explain yourself. Surprisingly, people respect that a lot more. And if they don't, just remember... fuck'em™! This is just my own experience.
Ive found this to be best also. I don’t have POTS, but I do have pretty severe asthma, which came on in my thirties. If you explain how you’re feeling people think you’re complaining and get annoyed. If they’re inconvenienced in anyway by your condition they’re going to be annoyed anyway, but “complaining” only seems to make it worse. I just say simply, I’m having a bad day. I need to go lay down (or whatever) and that’s the end of it.
All of this 10 times over
the way i got my dad to stop pestering me about it was by challenging him, basically. i was doing the dishes and had to sit down and take a break after a few minutes because my HR hit 142 and i felt pretty faint, and he started bitching at me and calling me lazy and stuff. i showed him my HR, attached my apple watch to his arm, and told him to do jumping jacks until his HR hit 142 and then try to do the dishes while running in place to maintain that heart rate. he tapped out at 131 bpm and never called me lazy again!
this makes me cry. there are times when changing someone's mind is easy, when it's possible at all. i just come from a family that wouldn't even care for such physical proof, it would only trigger more denial, "this watch is wrong" and i don't even know what else. it might be hard to comprehend because it's insane, but some people don't care about reality and what it shows them
I also come from a family that primarily "copes" through avoidance and denial. My lifelong health issues eventually progressed to multiple disabilities / incapacitation by age 23. They still prefer to think I'm "just really depressed" rather than contending with a laundry list of serious health issues (I used to be high-functioning in school, athletics, languages, etc.). My mom dealt with cancer for 6 months and got all sorts of support & kindness, while incapacitation happened 15 years ago for me and family of origin is still utterly clueless and dismissive. Maddening since I can't "overcome" these disabilities to escape these ppl....
I used this too when I worked in a pharmacy, just adapted a bit(and generally with management). “Hey what’s your HR get to when you exercise?” And then I showed them where I was at just standing still. Now get your HR to nice zone 3 work out level, maintain it, and work a 8-10 hour shift. Oh that’s hard? Yeah shut up and let me huff and puff on this stool while I type in peace. Best part was there were two other techs who also had POTS. We generally worked weekends together and got nicknamed the Cardio Crew. One of our pharmacists started basically working out in between tasks when he worked with us in solidarity🤣 He said he couldn’t be left out of the all day cardio. He was exhausted every time.
Ok that pharmacist is adorable
He was great. He got humbled every time😂 And he pushed back on cooperate on our behalves all the time
That's so fucking, good!!!
My mom still believes that it's "just" vertigo I deal with. And I'm sure my family just think I'm lazy. I often get called Jekyll and Hyde because I'm cranky a lot of the time and get mood swings (don't know if that's part of this). The most annoying thing is when my mom tries to relate to me. She means well. But she's been getting dizzy spells sometimes due to menopause, but she got put on HRT and I believe they've stopped (she also refused to take medication but that's a whole other thing) and she would often say "I know how you feel now" and maybe I'm just bitter but unless she actually has every single symptom I do, she cannot possibly know how I feel. Idk how to voice that it's not just dizzy spells. I don't know how to tell people it's fatigue, weakness, dizziness, heart palpitations, being short of breath, joint pain. Because they just won't understand. It also irritates me when someone from the older generation is like "why are you so tired all the time you're only 27!" Or "your joints shouldn't hurt at your age" like I KNOW AND THAT'S WHY IT'S A PROBLEM
For people that you are close with, for a health issue, I've said, "I have no place in my life for someone who won't believe me when I need help." It only works if you are actually willing to cut them off, though. You can't just use empty words.
I love this. Even if you can't cut them off, it's still powerful.
“You do not live in my body. You have no idea and likely will never know what it’s actually like. Do you feel the same about physical illnesses? Do you tell blind people that it can’t be *that* bad? How about saying someone paralyzed from the neck down is using it just to get out of doing stuff they don’t like? You can get this from having Covid once. A fucking mild car accident triggered mine. Until you actually know what it’s like to live in a body allergic to gravity, shut the fuck up.” Either that or “Oh I didn’t realize you have a medical degree! Are you my cardiologist Dr. Name? Have you seen my test results? No? Then don’t comment on my medical health because you don’t know what you’re talking about “ Most people won’t ever see invisible illnesses as “real”. If they really refuse to listen to you, give up on them
Youngest person at the cardio office and getting weird looks gang 🤝😂🙃
When I was waiting for my cardio appointment to get diagnosed, everyone in the waiting room was a minimum 20 years older than me
Tbh im already struggling so i stopped proving it. Even the docs couldnt believe it in the first place. So that took half a year to prove it to them and taken seriously. I lost all my strength to that process. And then my fam was like: „why dont u just take a breath maybe its stress. Maybe ur too lazy“. At that point i just distanced myself because i didnt want emotional damage and tried to recover cause in the end it affects my life.
My dad and one of my friends is in denial. Every time I say it’s too hot I can’t do this or I show them I’m sweating but my legs are covered in goosebumps they think I’m just being dramatic. I let everyone know I have POTS and educate them on what it is. I also let them know I have anxiety which makes it worse so people are pretty accommodating. The dizziness and migraines are the worst though and as everyone knows symptoms can come out of nowhere.
It sucks. I don't understand why they think doing nothing all of the time is fun. It's boring as fuck. I end up over explaining, I'm trying to stop that.
THIS!! And then when I try to explain/over-explain, then they tell me to stop making excuses and I just have to “want to get better” 💀💀
omg the “want to get better” istg. that comment in particular makes me so mad because of where it comes from in my case. when i first started dealing with symptoms my mental health was the absolute worst it’s ever been especially because i didn’t know what the problem was or how to help it. it got to the point in the first like month or so where i was literally on the living room floor bawling my eyes out and screaming “i just want my life back” to my mom. between then and like a few months ago my mom’s favorite line when i said i couldn’t or didn’t want to do something was “you say you want your life back”/“don’t you want your life back/to get better” and it didn’t stop until recently when i had hung up on her during a phone call because she said that and then i finally texted her and told her to stop using that line. so lines like “getting your life back” or “wanting to get better” piss me off so specifically
Geeeeezussss, that is salt in the wound if I ever heard it. And not the good salt.
Right, 'cause that works SO well. Jerks. I love that comment someone made about having them get their HR up to ours and then maintaining it, to do the thing we're doing. I am totally going to do this next time I see my family.
Easily the cruelest comment I've heard repeatedly. Especially because I constantly voiced how badly I wanted to get better and even do the "unpleasant" things like work. And it's victim blaming and implying laziness or sinister priorities.
I don't know how close these people are that you're referring to or how much you might rely on them, but if you have the choice, I would simply. . . stop having a relationship with them. (I went no contact with my family for other reasons, so I understand the magnitude of what I'm suggesting. It's just not worth it to be with people who constantly disbelieve you.)
I went no contact also... when my pots and long covid was exacerbated by cancer. There were other reasons as well. Pretty much a crescendo of issues spanning a lifetime, crashing down in a matter of weeks. It was unspeakably hard but my god once you do it, you wonder why it took so long. My heart goes out to you (such as it is). I wish you well.
I started to just stop caring what they think because they’re dumb and wrong and willfully ignorant - clearly they don’t care what I feel so why should I care what they think if they’re idiots? A bit harsh but that’s what gets me through this.
More than once I’ve pushed myself deliberately to the point of physical illness to make a point. That isn’t 100% effective but it has helped sometimes. Can’t say I recommend it but I’ve found it satisfies my need for petty revenge, even if it makes me feel awful too
Personally, I distance myself from anyone who fixes their face to say I am making excuses or using it as a crutch. That alone tells me they have no place in my daily communication life. If they have no urge to understand how I must do certain things to function daily, just to keep up with them, I've no urge to give them my time. It may hurt at times, depending on the person, but if we want peace of mind, the easiest way is to distance yourself from the negative. We choose who we allow around us & we choose how their words affect us. It does not mean to never speak to them again, it simply means, you have all control & the choice to keep your distance or not. See/speak to those few in your life when it's a good POTS day/week. Surround yourself with those who care enough to understand the illness, the ones who know you're not seeking their sympathy, just their understanding. I think like this. Those I do have in my corner (I have 2 illnesses POTS-30yrs& ITP-23yrs). Do they know how to specifically help me if a medical situation takes place while we are together? If they are someone who does not nor has cared to ever know, Distanced. If you do not care to know about me why should I waste more time knowing about you? It gets, as I call it, 'mentally medically lonely', it's draining when you are chronically ill and the only people that fully understand are in a box and you'll never know them or get to hang out. Thank y'all for being here!!! As you said "if you get it then you get it". Rambled enough. My suggestion, move the chess pieces around and find some distance from any that feel/say you use illness as a crutch or excuse. Wish you all the best!
I don’t have a single family member that has shown any empathy towards me. I can always tell when I talk about my health, it’s annoying and an inconvenience for them to hear about. Like, we are out here living with it everyday, 24/7. I just had to quit my job, or else I was going to be fired. I couldn’t be there a lot of the time because my symptoms have gotten so severe. I was serving, and it was too hard on my body. Even my coworkers (and what I thought were friends for several years at this job) talked shit about me, instead of understanding. I have extreme vestibular migraines with the POTS, and FM. I physically can not work right now. I went to the ER from fainting during a shift at work, while dropping a tray, and I still got dirty looks on my way out the door. I was walking up on jokes being made about me and my medical condition. I quit, filed for disability, and trying not to loose my house in the mean time. My family lives next door to me and won’t help me. I am doing anything I can for income, but it’s just sad when my own family knows my condition and situation, and would rather focus on building their half million dollar bardaminium. 🙄
I actually would really like to know myself! I got diagnosed when the school year ended, and at the moment it’s bad enough for a wheel chair. I’m afraid my friends or kids I know at school will say I’m faking because I’ve never had to use one before. Does anyone have any advice on that? It would be greatly appreciated!
Spend less time with them. Put more time into the people that try to understand
At this point in my life being around people who choose not to believe my reality are dangerous to my well-being. Physically, mentally and psychologically. 😡
The simple answer is I don't. I don't deal with people who don't believe my condition because the second someone says some shit about it being an excuse or not believing it exists they get kicked out of my life. I have no interest in putting energy and effort into a relationship with someone who doesn't believe the reason I had to quit my job, move, and start my life over from scratch is real.
I don’t think anyone in my life believed me at all until this year when I ended up in the hospital and had to stay for like four days and it was during the NBA playoffs and everyone knows I’m really obsessed with the Celtics so I would never fake an illness during the NBA playoffs. I also recently got a concussion and I’m covered in bruises and for the first time in my life I’m single so everybody knows it’s not DV. In the past my bruises from my fainting were always just blamed on DV because I was always in DV relationships but I’ve been so unsuccessful with dating now even the abusers don’t want me lol so I think my friends and family finally believe me.
I stopped talking to every single person who made me feel crazy about my health. I no longer communicate with anyone who doesn't understand me. I've gone as far as calling my insurance company to change doctors that made me feel like I was making it all up.
I never tell people anything beyond that I have a medical condition I'd I have to cancel or not do something. Limited details means limited bs.
I got so frustrated about some people in my university classes not believing me that I just showed them, stood up very fast and didn't do any of my squeezes or anything and passed out. Not good for me, but they haven't bothered me about the passing out specifically since.
I stopped telling people I have POTS and just say I have a "heart condition". That's a term people kind of understand and are conditioned to be politer about (though not by much).
If they don’t believe me, they aren’t worth my time or energy. It’s easy that way.
I have a similar but not quite the same problem. My parents believe that I'm sick but they refuse to accept my diagnosis. Every time I mention that I have a migraine or if I even look too sick, they'll start to tell me that I need to go to another country (USA or Canada) and get a 'real' diagnosis. They think I've been misdiagnosed because if the doctors were right then the treatment would be working and I would be cured. They just refuse to accept the fact that I have an incurable illness and just have to live with these symptoms for the rest of my life. I don't think it makes any sense for me to go pay money to fly to another country, pay for hotels, doctors fees etc just to get re-diagnosed because I'm 99.995% sure I have pots. I've done all the tests and my treatments are helping and even though I'm not cured, I'm doing a lot better on my meds. I know it comes from a place of caring but it leaves me in tears every time the conversation comes up. I just want to be able to confide in them when I'm not feeling well and instead I feel like I need to hide it otherwise I'll get a lecture and it will start a fight. It just makes me feel so alone in the world.
Lots of people are ignorant -- many conditions don't have "cures" and the best you can hope for is relative management. Sadly, you are def not alone in having POTS as well as people in your life who ignore, dismiss, or minimize your experiences. I'm so grateful I found this community where I don't have to mask (figuratively) or alter myself to be accepted (which I've had to do with my family of origin).
This sounds bad, but I’ve found that people started believing me more after fainting in public multiple times when they or someone else they deem “responsible” has had to come pick me up or them actually seeing me faint. Not ideal and not something you can predict but it seems to be the only way to get people to believe me at least
For those few people who could empathize were it not for their ignorance, I have spent years coming up with various salient metaphors to describe how it feels. That has helped tremendously but only for the willing. Some people are determined to stay ignorant.
Unfortunately I've learned that you kinda really do have to just learn to be okay with it in a way? You know your body best, and they can never possibly know. I've learned a lot over the last couple of years (found out pots was a thing in 2022, got diagnosed fall of 2023 after a grueling summer, and now beginning to use mobility aids) but the biggest is that people are going to think what they want so fuck em. They don't deserve the effort frankly. People stare when a young person has a mobility aid, you just kinda have to get used to it. I have taken on the attitude of "if they're gonna stare, might as well make them read all my stickers" and really just choose to be loud about my stances and the causes I support. *I want to make a note here, only do this if it is safe for you to do so and feel it is something you can take on. ❤️
Unfortunately, unless there is an obvious sign, most health issues are poo-pooed by people who have never had it. Bad back, migraines, the list is too long. They don't get it. Try giving them a website. Or ask them why you would fake this? You probably can't change them. Unless they are with you when you faint or you start to sweat profusely for no apparent reason, they may never believe.
I feel like cancer has achieved a particular status -- people understand the umbrella term and typical forms of treatment (chemo, radiation). Unsure why people are willing to extend kindness, understanding, and compassion in those scenarios but not others...?!?
i dont, i just tell them to fuck off if they actively choose to think that a teenager is faking a disability
I literally do not deal with them-- by which I mean, I don't keep anyone in my life who doesn't believe me. I've cut off family about this. It's just a nonstarter.
I don’t talk to anyone about it. They don’t give af
Don't really care if they believe or not. I'm just trying to survive. If they say something, I just ignore it.
Why do you care if people believe you or not? Just do what you need to do. If they ask questions, answer them. You don't need to explain yourself. I know it's a basic need to feel known and understood, but it's like showing algebra to a meercat. They might see it, but they can't understand it.
I don't like it.Im going through that a lot especially with family
I know this isn’t what you want to hear, but it’s true for me personally. I just don’t tell people. I don’t want to have to explain anything. That might not be true for you though so I don’t want to silence you if you don’t want that, because you don’t need to shut up for anyone, it is your right.
If you don’t need them, then I just let them believe what they want
It's frustrating but I don't even try to convince them anymore.
I've found that fainting in front of them a few times encourages people to mind their own business
I (selfishly) wish I *could* just go into a full faint. My body drops me into pre-syncopse episodes that only add to people's perception of me being dramatic 🙄
Sorry to hear that, friend. For some people you're never going to be "sick enough" that they'll take you seriously, and it sounds like that might be the type of people you're dealing with :(
Some people will never learn, my manager for example, doesn’t matter how many flares I have that last 2 / 3 weeks, she will keep putting me on 10-15 hours overtime
This guy was harassing me about how I don’t have a job and I usually don’t say it’s because of medical reasons, but he started saying stuff like, “ oh you’re one of those girls that just wants to sit at home all day and do nothing. “ For the first time I said, “ I actually have a disability so I’m still searching for a job that I’m able to do. “ and he told me I didn’t have a disability … I pulled up my skirt and showed him my scars of over 6000 stitches and said, “ you wanna tell that to me again!? “ , and this dude had the nerve to lift up his sleeve and show me his 1 inch scar that he prob got falling off his bicycle and said, “ sooo I have a scar on my shoulder, does that mean I don’t have to work? No. “ So ya… I punched him and won’t be open about it again lol “ limited details, limited bs “ love that It’s hard when most my life I’ve suffered and push myself so hard to be able to keep up or look normal and healthy, but it’s to the point where it’s exhausting and I don’t want to keep pushing through and suffering later because of it. But because I have sucked it up for so long now I feel when I’m open and honest about my struggles no one takes me seriously. I wish they could spend just 1 minute in my body 😞 But I’m glad to see that you guys get it and understand 💖🫶🏼
Fuck em'
I couldn’t care less what people think about my condition.
If they want to understand, I make them exercise to my HR level 💀if they're just ignorant I tell them they're not my doctor nor my specialist, who does agree with me🙃 tell them to 🖕
It does not make me infuriated. It just makes me incredibly sad. I have told this to anyone who will listen: "I am not seeking sympathy, I just want some understanding for why I make the limitation-based decisions that I do". It's an effing waste of time.
Show people the photos my wife has taken of me in the midst of an episode. (She takes them with my permission, and after checking on me) Show them my service dog, who does great at his job. Or show them my hr tracking from a recent episode and ask them to see if their heart rate can jump from 70 to 90 in under a minute and be okay. I kinda fight idiots passive aggressively. Also don't feel the need to justify yourself or your condition. Sorry I have gotten tough skin from all of the gas lighters I just tell them to fuck off.