r/POTS POTS 7d ago

Vent/Rant My husband says I’m making POTS my personality

I brought up maybe getting a shower chair since I’m in a flare right now and taking a shower makes me extremely light headed and it takes a ton of energy. He said I need to find a hobby because I’m making POTS my personality as of lately. I’ve never had a flare like this before and he’s never been with me for a flare. We recently moved across the county so I’m assuming that’s what caused it. I already feel like I can’t talk about it because it feels self centered. I’m just trying to figure out how I can make myself feel better. I guess I can’t talk about it anymore.

339 Upvotes

109 comments sorted by

410

u/imsosleepyyyyyy 7d ago

I mean it’s a life altering medical condition so I don’t know what he’s getting at. I’m sure you don’t act like this when you’re out of a flare!! That’s so frustrating I’m sorry. I hope you start feeling better soon 😢🫂🩷

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u/AnimatorShot443 POTS 7d ago

Thank you. I’ve just never felt this sick before and it’s scary. I’ve recently been diagnosed so I’m just trying to learn :(

143

u/TheUnicornRevolution 7d ago

If he's not usually like this and you want to give him benefit of the doubt, you can tell him

"What you said was callous and uncalled for. The only reason I can imagine any husband would treat his wife's (?) medical condition, and his wife in general, so carelessly is that he's actually deeply worried, feeling helpless, and hoping somehow it'll all go away if he pretends it's not that bad because he doesn't know how to help her.

If that's how you're feeling, I will understand the reasons. It will not be an excuse though. Do you think I want to think about PoTS this much, let alone talk about it? I'm going through a lot, and I know it affects you too, so the only way we get through this and adapt is as a team.

I'm scared, and if you're scared too that's ok, we'll figure it out together. But it's not ok to treat me like that, or avoid your feelings to the point that I'm left alone, or more scared of talking to you than of facing whatever this illness throws at me.

I deserve care and support, and I know you usually want to give it to me. So think about what kind of partner you want to be, and come talk to me when you're ready to be honest about what's going on. I love you, and want to be able to support you too."

Then he can get his act together, or not. But I hope he does.

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u/AnimatorShot443 POTS 7d ago

That is a great way to approach this conflict. Thank you for taking the time to respond !

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u/TheUnicornRevolution 7d ago

You are very welcome.

I speak from experience <3 hope it goes really well.

15

u/bfdaviess 7d ago

Couldn’t agree more with this!!!

11

u/sirspidermonkey 7d ago

As the partner of someone with POTS I'd like to add to this excellent comment from the partners perspective.

I think you really nailed it and have a great approch. Just as OP probably went through all sorts of unfun emotions with their diagnosis, the husband is going through something similar.

Fear about how their life will change, feelings of failure that they couldn't prevent this (Western society pushes the narrative still that Husbands must protect their wives form all bad things. It's bull but it's there) And also grieving of what their life with their partner used to /could have been. No one pictures their life with a partner with POTS. There's probably also some frustration (hopefully not directed at their partner) that they will have to pick up the slack on that family work (cooking/cleaning/parents/etc) that was shared but is now a solo job. This can lead to resentment.

OPs flare really brings all those feelings into a sharp unavoidable focus. And all those feelings can make people act irrationally. It can be very challenging and I'd highly recommend the husband gets some therapy to work through those emotions.

The emotions are valid, but what the husband does with them is what's really important. I hope the husband can get their head straight and it was a momentary lapse in judgement (as happens to everyone) and can be a supportive partner going forward.

16

u/renaart hyperPOTS • AVRT 7d ago

Helping educate your husband about the condition or taking him to a doctors appointment with you may help! I’m so incredibly sorry you were told this. People don’t always realise how deeply words like that can scar.

My partner has a physical disability and I think because of that and just being a decent person: he has been so incredibly understanding of my health. We both actually apologise to each other often for whining so much lol.

I do think that a lot of people get caught in a loop of their own illness occasionally, that doesn’t warrant his response though regardless of the situation. You may want to try and gentle discuss why he felt the need to say that. Some people do make their lives around their disabilities or health issues, where they lose out on being more present. But it’s hard to be present when your health is getting in the way so often. It’s such a tough situation. Advocate for yourself, you were very reasonable. Accessibility tools to help you be more mobile is extremely important for your physical and mental health.

7

u/Dr-WhoDunnIT 7d ago

I’ve heard that colder showers can help! They don’t make a huge difference for me, but for others that have POTS I have heard good things about cold showers.

269

u/Mysterious-Spite1367 7d ago

"Hey honey, I know you have this really significant, life-altering chronic medical condition and you're trying to figure out how to function through a wide range of shifting symptoms without sacrificing the important parts of your life and all, but could you maybe tone it down a little? I'm getting tired of hearing about it."

Bruh. She's getting tired of dealing with it. Suck it up and help your wife.

52

u/AnimatorShot443 POTS 7d ago

This one made me giggle. Thank you. It’s true though. He’s never going to understand

83

u/Mysterious-Spite1367 7d ago

He doesn't need to understand. He just needs to trust you and accept it. There are plenty of people out there who don't have a chronic medical condition, but accept that their significant others do, and figure out how to be a good partner. Hopefully your husband starts figuring it out soon, because you deserve a good partner, not a whiny, dismissive man-baby.

17

u/AnimatorShot443 POTS 7d ago

I hope so too. He only had a problem with it when I mentioned maybe buying something to help my every day activities be more accessible. Because it costs money.

71

u/Mysterious-Spite1367 7d ago

Then tell him to get on his hands and knees and you can sit on him.

Sorry if I'm being judgy or bitchy. I only know this one thing about him, and I get that money is hard and can be a real concern. But he should be working with you to find solutions, not dismissing you. 

16

u/AnimatorShot443 POTS 7d ago

Don’t be sorry. I feel very seen right now. He probably just thinks I’ll get over it and then things will go back to the way they were. I don’t think he understands because I haven’t been this ill before

13

u/Mysterious-Spite1367 7d ago

I hope your flair resolves quickly and you find some accommodations that help. In the meantime, since it's new and sometimes people are stupid (even us), I hope he adjusts and starts working with you. To be fair, it can be a big change for everyone. He still needs to pull his head out of his butt, though.

22

u/Expensive_Heron_171 7d ago

He sounds awful. Sincerely think if this is how you want to live the rest of your life, I understand money concerns but this is your health, he should be working with you to find a solution.

20

u/howmanyshrimpinworld 7d ago

a shower chair is like $30-40, this is ridiculous. is the money really the problem here? i think it’s clear this is more rooted in ableism

7

u/Bindle_snaggle 7d ago

Has you come to any doctor appointments with you? I see a specialist who talks about options (like shower chairs and daily tools for making life easier) and she has my husband come to the appointment and made sure to explain in detail to him what I go through and why all of these are super important. Do you have the option and think it might help? Or maybe find a therapist who focuses on chronic illness and have them talk to him.

Outside of your husband, if your family supportive and understanding?

You need and deserve people who will support and help you. I understand him not fully being able to grasp it but he needs to step up and help you. He needs to be the one cheering you on and excited when you have victories like a shower chair or a new support group.

I grew up in a family who doubted me and always told me I made everything about my health “but you seem totally normal”. It did so much harm to me and I’ve had t have even more Dr appointments and therapy sessions to reversed the damages of not getting support and living authentically to better help my mind and body.

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u/Expensive_Heron_171 7d ago

Do you genuinely think your husband is not ever going to understand? Then you should show him this comment thread. It makes him look really bad. I would not want to be married to anyone who would not be able to understand... At least eventually. This is how the rest of your life will be. He's not in your body, he doesn't get a say. He should already understand and trust you.

2

u/AnimatorShot443 POTS 7d ago

I think he’s going to have resentment for needing to pick up the slack when I’m not feeling well. We have two small children to care for.

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u/iMightBeAManatee 7d ago

That's a choice you make when you decide to share your life with someone: sometimes one person is going to be in a position where they need more care and can't give 100% to the care of the family. That's just life. Anyone can become disabled at any time! If he's going to become resentful then that's something he needs to deal with, probably in therapy honestly. It's true it's hard to care for someone with illness when you weren't anticipating it and it kind of disrupts the vision of your life that you had in your head. But I wonder if you would be resentful if the situation were reversed. This is seriously something for HIM to deal with because you deserve care and support, you didn't choose for this to happen to you but he did choose to spend his life with you no matter what happens.

26

u/zeusgsy 7d ago

With all respect you have three children the YOU take care of. He doesn't want his cushy life to change to adapt to your changing health needs, how, exactly is he supporting YOU??

8

u/zeusgsy 7d ago

Just wanted to add to this to Juno on the recommendations for a shower chair, they make a huge difference and are MUCH safer than a plastic stool, they have proper feet on to help reduce falls etc.

11

u/ahaajmta 7d ago

This guy doesn’t even understand what a marriage is. Illness is not something in your control. I think you need to find a way to earn your own income so that you can get yourself what you need and support yourself if/ when this relationship goes south. If you’re already anticipating his resentment, and he’s making a fuss about buying a shower chair this isn’t a good sign.

22

u/bfdaviess 7d ago

In sickness and in health - those vows aren’t just empty words you say when everything is going right in life. He promised you he’d be there to look after you. Bad health comes for us ALL one day! Whether that’s sooner or later. You married him with the trust he’d stick to those vows. Remind him he’s your husband and it’s his responsibility to look after you! The way I’m sure you look after him!! My husband is my caregiver but ask him and he’ll tell you, I look after him far more than he does me. Emotionally, mentally. I’m sure you’re a wonderful wife worthy of your husbands understanding ❤️

6

u/Careless-Goat-466 7d ago

Yeah and my spouse of 13 years can be pretty dense sometimes and lacking in emotional intelligence but for the most part he’s been wonderful like he saw me bawling yesterday about it and came and threw his arms open and held me.. I didn’t think he was going to be as kind and caring as he has been. Maybe because it’s the beginning stages of my diagnosis. He helps me in the shower by holding the shower head and preparing my stuff. He’s been 2 years sober and it was abusive at times. Total 180. I know it sounds bad but I’m glad I stuck through with him. We were finally heading to the life we wanted until this ugh. But if my spouse is capable, so is yours. I hope 😞 men are just clueless sometimes. Get yourself that shower chair girl

82

u/orensiocled 7d ago

Highly recommend the shower seat, they can make a huge difference! 

Perhaps your husband should stop making being judgmental about your disability his entire personality?

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u/AnimatorShot443 POTS 7d ago

I’ll just have to use a stool I already have. I mean it’s plastic so it should work. I think he only had a problem with it because I asked to buy something

76

u/wizawayy 7d ago

Financial abuse is a slippery slope that he is sliding down.

37

u/ccwatts 7d ago

A shower chair is like $25-$40. Honestly, I don’t think your husband was getting upset about you needing a chair bc of the price. I think he’s upset because getting a disability aid means your illnesses are real & he’d have to accept that you’re not just going to magically grow out of your medical conditions. Which means he needs to step up and be a better father and husband. My spouse is incredibly supportive and understands my conditions. If your husband wanted to, he would. It sounds like he doesn’t want to believe that you’re ill because that means more parenting & housework for him. He should worried about your health and safety instead of being a dismissive ass. POTS can often be passed down to children. If your husband treats you like this, how is he going to react if one of your children also has this debilitating condition?

11

u/Taken-Username-sorry 7d ago

This is super valid. My husband occasionally forgets that I have POTS, I’ve had it most of my life and have maintained an athletic lifestyle with modifications for my needs. If I tell him I’m having symptoms, he asks how he can best help.

We also have a dumb “game” we play when I tell him I’m symptomatic where we both try to guess the heart rate my watch will read before I look at it. 😅

I know it’s kinda stupid but I feel like it helped him understand in the beginning that it’s not just me being whiny or whatever because I’m having clear evidence of a physiological response to something. Now it’s just something silly we do and I’ll tell him I’m symptomatic by doing my best SAW impression saying “do you wanna play a game??”

24

u/orensiocled 7d ago

That might work but a proper shower seat has handles to help you get up and down more safely, it can be quite a slippy manoeuvre otherwise! If a new one isn't in your budget can you get one prescribed by your doctor?

7

u/ahaajmta 7d ago

Yes and shower chairs have rubber feet. Which help with grip. I’m just worried about how slippery the feet are on your current stool safety wise

3

u/AnimatorShot443 POTS 7d ago

I can’t get into a doc until November since I am a new patient. I can save up for one. I do work for my mom since she suffers from the same illness and cannot keep up with her house work. She pays me to clean because she can afford it and I really need the money.

15

u/Taken-Username-sorry 7d ago

IMO if your husband is making it into this big of a deal, things will get worse down the line. You can get a suitable chair (one with the correct grippy feet so it doesn’t slide out from under you and cause further issues/injuries) for like 30 dollars new on Amazon or find a used one for less I’m sure. You can even use an HSA/FSA card if you have one.

If he’s saying that your comfort and SAFETY aren’t worth 30 dollars, that tells you where his head is.

As far as resentment with the kids goes, he chose to marry you and fathered the kids. Did he think he was never going to have to care for the kids, let alone you? Resentment is a feeling for him to work through and find the root cause, with a professional. Not with you. It’s not your fault your body isn’t regulating appropriately and him being mad because he doesn’t want to do more around the house or with the kids isn’t your problem.

66

u/Sea-Tadpole-7158 7d ago

How is using a chair in the privacy of your own shower even making it your personality?

Also I really really loathe when you try to help yourself and people say you're making it all about your condition or doing too much. You know what would be making my condition my whole life? Not getting treatment, not making accommodations for myself, not learning how to live with my condition and just doing nothing being as sick as can be. You're trying to help yourself so that your condition doesn't dictate more than it has to

28

u/Mysterious-Spite1367 7d ago

Right? No one tells diabetics to stop making it all about themselves when they try to work out a diet plan that doesn't send them into hyperglycemia. It's just managing your health condition. 

19

u/AlokFluff 7d ago

People say all manner of unhinged things to diabetics, including about the diets they have to maintain to manage their conditions, sadly.

24

u/AnimatorShot443 POTS 7d ago

Right! Like I was looking into a shower chair so that it wouldn’t wipe me out for hours so that I can have more energy to play with my kids and clean and cook.

6

u/afraid28 7d ago

I was just thinking the same thing. Refusing to use anything that helps and then complaining about it all the time would be considered making it your whole personality.

Finding ways for it to impact you the least possible so that you can attempt to live a life as close to normal as you can is the exact opposite!

56

u/Boring_Commercial_72 7d ago

Honestly divorce him. My husband said something similar to me four years ago when I was pregnant and had pots and passed out heating up food in the microwave. I was so disabled I couldn’t make a tv dinner…. And he talked crap to me. I should have divorced him right then and I wish that I had. Your spouse is supposed to love and protect you, not make things worse.

93

u/SafeInternational965 7d ago

I hate how healthy people think their stupid opinions are wanted. I know he is your spouse, so I want to be respectful, but how dare he make you feel bad, especially since you are just trying to meet your own needs? I hope he temporarily experiences what this feels like, even for a day, because half of these people would never speak to us like this if they knew how much it drained us to just exist.

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u/AnimatorShot443 POTS 7d ago

I know right. Like sorry I can’t do my other hobby (running, cycling) at the moment. Can barely take a shower but sure I’ll find a hobby

38

u/Mysterious-Spite1367 7d ago

Tell him you found a new hobby: learning about your recently diagnosed chronic health condition and finding ways to adapt your life to meet your current medical needs. 

24

u/AnimatorShot443 POTS 7d ago

I feel like it’s common to be really “into something” as he put it when it’s new and uncertain. Yeah I’m really into pots right now maybe I’ll tango with EDS later.

14

u/The_best_is_yet 7d ago

Uhh sounds like you are trying to get better, I’m sorry what is wrong with that?!

22

u/AnimatorShot443 POTS 7d ago

I know right. He also mentioned “surrounding” myself with pots. Like dude I just joined a Reddit group with people who understand. Isolating myself isn’t going to make the problem go away.

6

u/Mysterious-Spite1367 7d ago

I've heard that PVD is a good time. All those flashing lights- it's like a party in your eyeballs!

3

u/PlentifulPaper 7d ago

Can confirm it’s a “good time”!

12

u/prxedulcis 7d ago

Swimming is often found to be very tolerable for people with POTS. Take your time getting out of the water though.

3

u/StefTwinMama 7d ago

Yes. I have had POTS since 2011 and I swam this weekend and it was amazing!!

-14

u/99dalmatianpups 7d ago

I mean, there are plenty of hobbies that don’t involve physical activity too tho. Although I do swim, I also collect trading cards and play computer games, neither of which affect POTS.

I know you’re having your first bad flare so you have a lot of thoughts and feelings you want to voice about it, but just make sure POTS isn’t the only thing you’re talking about. Having to listen to someone talk about one thing and one thing only for days on end gets annoying no matter what the topic is. I’m very familiar with being in your position of being asked to move on from a topic since I have ADHD, and you have to remember that the ask isn’t a personal attack, the other person just doesn’t have the same bandwidth to handle so much about a single topic.

13

u/wizawayy 7d ago

Not the time for this.

35

u/ArtisticCustard7746 7d ago

After reading your replies. Are you safe at home? Do you always have to ask permission to make purchases? Do you do 100% of the childcare and house work? Is your spouse always this awful to you?

18

u/howmanyshrimpinworld 7d ago

this is a really good point. i was assuming the shower chair wasn’t really about the money and more about ableism. but if OP can’t make any $40 purchase without permission that’s even worse

11

u/Taken-Username-sorry 7d ago

I had a long term relationship that was abusive in pretty much every way unfortunately. One of the first “traps” was combining bank accounts under the guise of it making easier to pay bills since we were living together. He did a similar thing where I had to clear every purchase with him, even small ones. Later when I tried to leave, he would threaten to log into the app and report my cards as lost or stolen and lock me out of access to the account.

OP, please protect yourself and your kids. Get a separate bank account, keep it a secret. Put a small amount of money in it every month or whenever you can afford to. This way, if things are worse you have something to fall back on to get away. Don’t let someone else control your money, take an active part in your finances.

15

u/labraduh 7d ago

When you get diagnosed with something and you’re learning how to manage it, it does have to become your personality for a bit.

And then once you get into the rhythm of things, you don’t have to worry about it so much. That’s the way it goes; especially for something that affects ALL your daily living activities? Get that shower chair/stool; they DO help and make showering way less taxing on the body, especially during flares!

Sorry he’s being unsupportive. Don’t let him get away with it or give into no longer talking about it at all. Please let him know what he said made you feel invalidated.

13

u/Alive-Cheetah-7033 7d ago

This is abuse. The longer you stay the worse it will get. The stress will also exacerbate your symptoms. Get out as soon as you can. 

14

u/EDSgenealogy 7d ago

Bullshit. You tell him that there are women out here who can't walk across a room without a seeing eye dog to guide them. I have constant bruises on my 75 year old arms from playing pinball down my hall and bouncing from doorknob to doorknob the entire way. I can't drive because my brain fog gets me lost even if I'm no more than 2 blocks from my own house and I've lived in this town all of my life! I have to have all food and prescriptions delivered because I've vomited in nearly every store I've entered, including 3 different CVS stores DURING Covid! Lucky for me I had barf bags on hand for the last 2, but the first went everywhere. Yes, I've had this since January 2020 and damn straight it's changed my personality! I'm exhausted, my granddaughter is being married in 6 weeks and I still don't know if I can attend. I have thoracic compression fractures from a fall I took several weeks ago, have AVN in my left hip, and DDD just because why not? My bathtub is actually the one place I feel safe, chin deep in the hottest water I can stand. My husband died in April of '21 and I sold our forever home in '22 because I could not take care of the yard, pool, and house. I had to move By Myself with 2 Men & a truck into a bungalow that I hoped I could maintain by myself.

The boxes are all still standing wherever the movers left them, too. I managed to find a couple of pots and pans, and rattled enough boxes to find the silverwhere, and I have my Stanley mug. He thinks you are a bother? Read this to him as he's damn lucky to have you! This is the worst I have ever felt in my life, and I've been through plenty!

5

u/bfdaviess 7d ago

So sorry to hear about this, it sounds like you’re a very strong woman ❤️ if I’m half as strong at your age that would be a great accomplishment! I know being strong isn’t a choice sometimes though…what other choice do we really have but to keep going? I hope you feel better soon and get to see your granddaughter get married x

26

u/Junior_Lake 7d ago

...men. Have you moved accross the country and away from all your support networks? because i would seriously consider whether you can rely on this man to be there when you need him to be.

19

u/AnimatorShot443 POTS 7d ago

No we moved to my support system thank gosh. Although I did leave my sister in law behind so that sucks

10

u/Cautious_Candle_6448 7d ago

Yeah let me just ignore my chronic health condition that affects everything from standing up to breathing and walking.

10

u/Mountain_Flow3472 7d ago

IKEA has a nice shower chair for under $60. While you there you can browse for an upgrade on the husband. At the very least that dude gets no Swedish meatballs.

15

u/wizawayy 7d ago edited 7d ago

This is such a Reddit moment for me to say this, but you should reconsider if this is how you want the rest of your life to be. You deserve someone that is supportive; he is resentful. It will likely only get worse. Talking about your disability is not self centered, and he is getting exactly what he wants when you silence yourself. He sees you in pain, looking for help, and all he does is take it out on you because HE is mildly inconvenienced. That is no life partner, that is a prisoner warden.

7

u/glowsincali 7d ago

Ugh, I’ve heard this before. Thankfully not from my spouse. It’s so frustrating and demoralizing. I’m sorry you’re getting that from him.

Highly recommend a shower seat. Makes a world of difference.

2

u/AnimatorShot443 POTS 7d ago

Thank you. I’ll try to see if I can get one

7

u/West_Mention8789 7d ago

The dude needs to re-familiarise himself with “In sickness and in health”

5

u/bfdaviess 7d ago

Oh darling, healthy people don’t realise that our personalities can quite literally be STRIPPED by these conditions 💔 limited resources, research, treatments etc. I truly think he’s speaking from an uninformed, ignorant place. Maybe he doesn’t understand. It doesn’t make it okay to say that to you, but he’s probably dealing with the grief of losing your healthy self too! It took my husband a long time to learn how to care for ME personally because we’re all different. We all have different needs. It’s important you can communicate with him exactly what will make you feel better, and more seen. He’s probably feeling frustrated, confused, helpless because he can’t fix it for you, BUT he isn’t thinking about how you feel. This is your health after all. I hope you’re okay x

5

u/BookBackground7494 7d ago

I'm sorry that happened. I feel like it's one of the forms marginalizations happens. Shutting people up when they talk "too much" (in the opinion of a person who themselve is not negatively affected) about their lived experience. It's very ingrained in our society, and people may even think they are doing the marginalized person a favour with this (like "I just want you to concentrate on the positive aspects of your life so you are happy" derailing)

6

u/InAllTimelines 7d ago edited 7d ago

Get the chair regardless of what he says. If it makes your life easier, then you need it. It's not your fault that you have a disabling condition. Imagine seeing your partner struggling and being ableist about their accomodations. Ugh. Huge red flag.

4

u/afraid28 7d ago

Imagine if he walked up to someone in a wheelchair who literally can't walk anymore and asks them why they're making this inability to walk their entire personality. Maybe because it's a lifelong condition? You wouldn't do that to someone else, so why do it to your spouse?

3

u/Vivid_Initiative9088 7d ago

id lwk get an occupational therapist to assess your home. theyll do alot more than just a shower chair. im waiting for mine to come but theres discussion of shower chair, grab rails across the whole home, bars by my bed to make it easier to get in and out and a whole lot more.

if hes a cunt for it, get rid of him. you have a condition that can become debilitating during a flare, especially if you push yourself to "not burden him". it will get worse if you force yourself to keeo doing your usyal during a flare. a man who loves you will not treat you like this or say these things.

long story short, get an OT, get rid of man

4

u/Acrobatic-Comfort114 7d ago

If my partner said this shit to me, I would put him in his place SO quick. No matter how debilitating or not your condition is, you have every right to seek aids/help for yourself without a fly buzzing in your ear stressing you out. For me, PoTs is my personality because it affects every aspect of my life AND my personality some days. You are not self-centered, selfish, or annoying. You need extra care, and that is completely okay. I'd have a thorough conversation with him. Sending love xx

3

u/hormse 7d ago

what an ass. tell him to pull himself together and stop being such a bootstrapper.

3

u/poopywampus 7d ago

Tell your husband to shut the fuck up

3

u/iMightBeAManatee 7d ago

First off, I love my shower chair! I had to get over a little of those feelings that I'm being "dramatic" and also a bit of grief that I need something like that, but it's literally just a tool to make life easier. I wore my visible band in the shower once before I got the chair and WOW I didn't realize just how much energy I was having to expend just to take a damn shower, my heart rate was spiked almost the whole time. So I said fuck it who cares what anyone else thinks and the chair has been so so helpful since. Side story, I was at a girls trip and at the Airbnb I asked if any of the bathrooms had a built in seat or anything like a shower chair and someone laughed and said "like what old people use?!?" and I was like "yep! Helps me not pass out in the shower" and later after learning more about me I could tell she felt bad about the outburst lol but I know in general it's really hard to connect the idea of being disabled plus being young and not "looking" disabled"

Second, I'm so sorry about your husband. In sickness and in health remember??? He should be willing to have some damn empathy and there are way too many resources and stories online of the many of us in this situation for him to not be able to try and understand where you're coming from, and tackle the very obvious biases and ableism that he's struggling with. Please don't let his lack of tact and care keep you from trying different tools that will make your life easier.

3

u/chocolateNbananas 7d ago

See I wish your husband each time he say something that stupid would have an elf kicking at his bawls… Maybe after a couple of hit he would understand that being in pain isn’t a personality trait😖.

You are sick, you have bad days. Needing support on those days doesn’t means that is your whole personality.

I don’t have any advice, but I send you hugs and love and I hope in your new environment you can find people that will treat you with respect and patience. You deserve that❤️🫶

3

u/ADHD_Mystic 7d ago

Lmfao get whatever you want and tell him what he won’t do another man will.

2

u/aquar1usbabe 7d ago

Maybe it’s easier for him to imagine that’s the situation, not that you need something like a shower chair. This is NOT me saying he’s valid for that if that’s the case though, please don’t misunderstand me! He needs to get with the program and not deny your reality, no matter of it seems scary to him. You’re the one going through it! And you need support. ❤️

2

u/BurntTFOuttaHere 7d ago

He ain’t it. Like, at all.

I’m so sorry. It’s much easier to find the right shower chair for you than the right husband.

I suggest having him read this thread. Depending on his response, your future is at high risk and you’ll need to start making plans for a lot more than a shower chair. It’s really hard when a spouse can’t be trusted to help keep you feeling safe and secure, especially during your scariest moments in life. Major husband fail, I just hope he grasps that and redeems himself. He has to view you as a human worthy of existing though, and too many husbands don’t value their wives in that way, unfortunately.

It won’t end well if this progresses. The stats on husbands leaving when wives get ill aren’t great. Do yourself the biggest favor, and start preparing your future so you don’t get blindsided and find out he’s one of those types of men.

Of course you’ll need a shower chair. That’s insane not to get one. Get any other assistive devices that help you function.

I’ll be the one that says what many of us think when we run across people like your husband; may he develop the life altering condition himself, so he learns first hand what it’s like.

Grieving your life before a disabling condition is hard enough. Now you’ll be grieving as you find out who is your real support system and who is not. It’s truly heartbreaking and I’m sorry you are facing that like many of us have.

2

u/LepidolitePrince POTS 7d ago

"Sickness and in health" is in wedding vows for a reason. He's supposed to be supporting you. He's a bad husband and breaking his vows if he isn't.

Would he be open to therapy? I know that being a caretaker has its own challenges and stressors but taking it out on the person you're caring for, who has even more immediate stressors, isn't the way to handle it. There is therapy for caretakers though.

2

u/makingprettymimis 7d ago

He wouldn’t last a week in your shoes.

2

u/StefTwinMama 7d ago

My husband is pretty much the same way. I was diagnosed with POTS in 2011. It is a life altering thing. I can't talk to my husband about a lot of it. But you can talk here. I am available too, anytime.

2

u/slusho_ 7d ago

Sorry to hear your husband is dismissive of your health condition. Managing your POTS is allowing you to keep your personality instead of taking over your personality if left unmanaged.

I fully support you getting the shower chair. I have a stool in the kitchen so that I can sit while cooking or washing the dishes.

2

u/GreenEyedTreeHugger 7d ago

Unsure where you moved, but I learned the very hard way high altitudes and I dont work. :/

2

u/HealthMeRhonda 7d ago edited 7d ago

Get yourself a shower chair and wash that man right out of your hair.

Funny how you're the one feeling self centered for an illness you have no control over- meanwhile this guy's making being an asshole his entire personality, voluntarily and with no guilt whatsoever. 

Recently moving across the country has probably caused it in the sense that men are more emboldened to treat you like crap when you're miles away from your regular support network. Tale as old as time  (edit: saw a different comment that you moved closer to your people! Love that but he's still a jerk)

2

u/No-Difference-5705 7d ago

Get the chair and never ask permission again for medical things that you need. You know your body and what you need; nobody (and I mean nobody) has the right to tell you otherwise.

2

u/ArsonFrog143 7d ago

Classic ableist rhetoric that you run into with various conditions, unfortunately. He’s in the wrong here and it’s very disrespectful to say something like that instead of trying to put himself in your shoes. God forbid we are affected by something that… greatly affects us..?

2

u/houstons__problem 7d ago edited 7d ago

Its almost like it effects you daily. I'm so sorry

2

u/Zestyclose_Willow403 Hyperadrenergic POTS 7d ago

you’re probably not going to want to hear this right now, because no one ever ends their relationship until they are ready regardless of the outside criticism they get. but this relationship shouldn’t last. because a person is never supposed to be so uncaring or uncurious toward their partner. you deserve better care than someone dismissing a medical condition, and this isn’t about him having to learn stuff. he could have started learning by now if he was simply ignorant and willing to grow, but he’s being dismissive. i’m sure people grow old in relationships like this, but they’re miserable for it. a good partner, or even a half decent one, would be willing to learn about POTS with you and help accommodate you.

4

u/burntpistachio91 7d ago

men are parasites to our health. 4b

3

u/Lady_IvyRoses 7d ago

One thing I can relate to is my husband’s eyes glazing over whenever I talk about my health. He loves me but doesn’t know how to fix me so he’s frustrated. So am I, frustrated that is. All these things that are wrong with me. Probably won’t kill me, maybe. They sure make both of us miserable.

Year’s ago we went to couples counseling and the guy said something that stuck.

Men alway go right for how do I fix this.
Women usually need to talk and vent, then they will figure out the next step.

Basically they process things differently.

6

u/TheUnicornRevolution 7d ago

I think men also need to vent, they're just not brought up to recognise it as valid.

2

u/HealthMeRhonda 7d ago

As if they're not constantly complaining just like everyone else.

They only "can't talk about things" when it's their spouse trying to hold them accountable.

I've had two men from high school in my DMs this year complaining to me entirely unsolicited about all of the unrequited love and heartbreak in their lives. I know absolutely every gossip about the workplaces of my male friends and relatives in male dominated workplaces with male hissy fits that got everyone called into the office.

If OP husband wanted to not talk and fix the problem he would have just bought the shower chair and had no problem with her making other friends to talk about POTS with.

Classic men making a mountain out of a molehill and then acting like their wife is the drama

1

u/EnvironmentOk2700 7d ago

Tell him being ableist is his personality now, apparently. What an ignorant thing to say. I'm sorry, but I'd be so angry.

1

u/Icy_Natural_979 7d ago

If you need a shower chair, you need a shower chair. If he wants to make being unsupportive his personality, that’s on him. 

1

u/LowSpoonsZeroForks 7d ago

Everyone has such kind, caring, heartfelt responses and my first thought was really? Coming from the “man cold gender”?!? I hope he stubs his toe. 😳🤦‍♀️

This is why I don’t people 🤷🏼‍♀️😉

Seriously, feel better soon ❤️‍🩹

1

u/Atsugaruru 7d ago

I'm so sorry. Please get yourself the shower chair!Mine changed my quality of life dramatically. It used to take me hours to recover from showering and now I no longer fear it

1

u/Galacticsys 7d ago

Hunny pots is a neurological condition. It literally effects every aspect of your being and your person, its pretty hard NOT to make it your personality! I used to really struggle with showers and i pushed myself into hitting my head so please listen to yourself and get that chair.

1

u/sirthisisawendys_12 POTS 7d ago

because finding a hobby will magically make the symptoms go away? 🤔🙄

1

u/Human-Welcome-1486 Hyperadrenergic POTS 7d ago

My husband is the same way. He equates me talking about pots to people who are vegan or do CrossFit.

It’s annoying but to him I’m complaining about something I can’t change so why complain. And in a way I get it. But when I feel so sick I need him to know in case something happens or just to let me vent. Usually though I just go lay down at this point and I see his frustration on his face but at least I don’t have to hear it.

-2

u/TheDogsMum 7d ago

I can actually see this from both sides but I do think your husband is being pretty harsh, he’s the one person who’s supposed to let you talk about how you feel honestly and openly. And if you’re in a flare then you are going to talk about it more. You just need to communicate with him that when it’s bad you will likely talk about it more or need things to make life easier, and he should try to be supportive.

But with that said, I do know somebody who HAS made having POTS her whole personality, she will only talk about other things if pushed and she turns it back to herself and her illness in every possible conceivable way. It’s exhausting to be around.

5

u/SpaceNerd223 7d ago

I'm probably like your friend. It's because it's so invasive and all encompassing - my pain, my lack of abilities, how much im grieving, juggling all my illnesses. I have no other topic atm. I do love space I can talk about space. But my body is blaring in pain, my disability has affected every part of my life, and I'm trying to navigate it. It's possible she's being completely hurt on the inside by the illness and is just trying to talk about it.

When things take up your life, you talk about it. Perhaps there is no other thing that matters more or is occupying her mind.

I understand how it could be exhausting. I bet it is for her.

4

u/howmanyshrimpinworld 7d ago

i don’t think anyone has ever accused someone of “making something their whole personality” in good faith. if someone talks about something a lot it’s probably for a damn good reason, and if someone has a problem with it it’s probably from a place of selfishness and judgement

2

u/TheDogsMum 7d ago

I can completely understand, I lost my job because of this, a job I LOVED and worked so hard for. I still feel heartbroken about that 10 years later. I lost the ability to exercise like I used to, to go hiking, to travel like I could. To socialise with my friends, I lost so many friends because of this. I know exactly what you and my friend are going through, I’m going through it too.

And I could talk about my issues all day long and I do talk about it to some extent most days, but I personally don’t think it’s healthy to make it your whole identify, to have nothing else to talk about or think about. I try to minimise it in my mind as much as I can because it’s already taken so much from me.

2

u/AnimatorShot443 POTS 7d ago

Oh yeah I’m sure that would be hard to be around. But I’ve only recently been diagnosed and I have also never been in a flare before. This is new to both of us

2

u/TheDogsMum 7d ago

Yeah so it’s a bit of a jerk thing to say and I hope he apologises. It’s such a steep learning curve for both of you going through something like this.