Men! Can They Coexist With Dysautonomia

[Chrissy]

It will be 6 years this December since I first noticed the dysautonomia decline that wrecked my world in less than 8 months. But I've managed to cope, deal with it, whatever you want to call it. My life was managable and getting back on track. Then I met a guy, don't get me wrong I've had boyfriends since I got sick but they usually didn't last long and ended badly. This one seemed different. He broke most of my "rules for men I'll date". The biggest were he was long distance and only a year older than me (I usually date 5 years older so they are mature and responsible, tired of serial dating and ready to look for a serious relationship.). But we hit it off immediately, talking about all our interests, morals, and future plans. He bonded well with my parents who are currently my sole support ( financial and emotionally). He said he didn't care if I have medical problems and he loved me just the way I am. But then I went 6 weeks with very little quality sleep, most nights I was lucky to get 1-3 hours a night. I'd developed a "tic" that eventually led to a trip to the ER and I was so weak and tired and emotional I thought I'd be admitted for exhaustion or a nervious break down. I tried one of my dad's lunesta pills, nothing. Then I tried Ambian, also no luck. So when I got home my doctor gave me samples of Ambian CR of various strengths and told me to work my way up until I found one that works. I'm currently on 12.5 mg and even that takes forever to kick in if at all. Meanwhile I was on a trip to see one of my doctors on the Ky/Oh border which is a 13 hour drive, with a 4 day stop in Lexington, Ky for a business event. I was over stimulated and a total wreck. By the time we got back from that trip, my boyfriend was at my house for 3 days off of work. I had a mild adrenaline rush, just because I was happy to see him, but I still wasn't sleeping and on a downward spiral in the physical health department. But we talked about him moving to Lafayette and getting a job here to be closer to me and get away from his current stressful job/life, even if that meant living with me and my parents until he could save for his own place. So I put what little energy I had into reorganizing my bedroom, bathroom, and the back office to give us space to be alone and to make room for his stuff. Needless to say when he came for his next days off, I was crashing HARD. He seemed supportive and loving, but I spent most of the day in the back room resting trying my best to fall asleep. So he went home early to beat the traffic and since I was "sleeping" anyway. Later that night he chatted with both me and my mom about different subjects, but told both of us that his mom irritated him because she said something mean after he told her that the reason he came home early was because I was ignoring him. The woman already hates me even though she's never met me, why tell her I was ignoring you? So we straightened that out and made sure he knew "crashing" was nothing against him it is just something that happens when I push my limits too far. So a few glorious weeks of blissful talking and together time and he's talking about when he gets a good job then we're gonna get married and have 3 babies. Which sounds nice I really love him, but I'm scared to rush into marriage until he knows all the secret nasty sides of this condition. Because I've read posts on this forum in the past of marriages ending, the husband taking the kids and the Potsey ends up back home with mom and dad. As for the kids, I'd love a big family, but I can barely handle my two young nieces visiting for a week. I'd be happy with one child. So then when he visits he sits on the couch where I usually lay and plays on his computer all day, while I'm organizing two rooms, doing chores around the house, and helping my mom with our home based business. Then when we cook dinner, which we only do when dad is in town (cause he works 7/7 for an offshore company) or we have company, he decides he doesn't like what we cooked and instead of grabbing some cereal, making a sandwich, or cooking something himself; we end up trying to figure out what he's gonna eat. Irritating, but he's a guy. No offense to any guys reading this. But this last trip he visited he got quiet and ended up leaving early. He finished lunch, picked up his stuff and headed for his car. So I got up and followed him out like I always do and he stood there looking at me not saying anything. So I gave him a hug and a kiss, then another hug and he got in his car and left. Not saying anything. I figured he was mad, but not sure why. He gets home and sends my mom an IM, but doesn't contact me. I was watching tv anyways so I figured if he wanted to talk he'd send me a message. But then I find out he's unloading all these complaints of stuff I did that was wrong to my mom and when I read what he was saying I had fire coming out of my ears I was so mad. He said I'm distant and don't sit and hold his hand the whole 3 days he's here. If he's gonna live here he's gonna have to get used to the fact that I have things I need to do and can't hold his hand while he's on the computer all day. He's so insecure and I can't put more stress in my life by making sure every move I make or everything I do is not gonna hurt his feelings. Part of me knows that relationships take work and that you have to adjust to each others habits and schedules. But the other part says he's gonna be more stress in my life that I really don't need. I could use some advice. Thanks Chrissy.

[potsgirl]

I must say that I'm opposed to this poll because there are plenty of men who get dysautonomia, too, and have the same problems that women do. I don't think we can confine this to one sex. Both sexes suffer from relationship problems. Maybe make the poll gender specific to see if there's a difference between them - of course we don't have as many men as women, as POTS usually tends to hit women more frequently and women are also more prone to join support groups.

[Chrissy]

I must say that I'm opposed to this poll because there are plenty of men who get dysautonomia, too, and have the same problems that women do. I don't think we can confine this to one sex. Both sexes suffer from relationship problems. Maybe make the poll gender specific to see if there's a difference between them - of course we don't have as many men as women, as POTS usually tends to hit women more frequently and women are also more prone to join support groups.

Sorry. The "Men! Can They Coexist With Dysautonomia" was the topic of my rant about my man trouble. Then I realized I could add a poll. I'm still getting used to how to use this website. I know there are plenty of men with dysautonomia with the same relationship issues. I just know from my observation of friends and family, men don't handle illness well when it comes to people they love. Again sorry for appearing to make it gender specific.

[juliegee]

I must say that I'm opposed to this poll because there are plenty of men who get dysautonomia, too, and have the same problems that women do. I don't think we can confine this to one sex. Both sexes suffer from relationship problems. Maybe make the poll gender specific to see if there's a difference between them - of course we don't have as many men as women, as POTS usually tends to hit women more frequently and women are also more prone to join support groups.

Actually, the poll isn't gender specific- just the headline. It works for either sex. However as an MFT, I might suggest a few other categories:

-Married with more ups than downs

-Married with more downs than up

-In a relationship with more ups than downs

-In a relationship with more downs than ups

Not every relationship is "happy ever after" or breaks. The vast majority of folks trudge along....more or less successfully hoping to make it work.

[juliegee]

((((Chrissy)))))

So sorry you are dealing with this disappointment. Relationships are tough in the best of circumstances, BUT you were dealing with a long distance component, not to mention your illness. My thought is that he was in love "with the idea" of you, without realizing what he was really getting into. I'm guessing you felt the same way about him. When you date long distance, you have the opportunity to only show the best part of yourself....which worked fine until you couldn't sustain the image.

The thing that bothers me the most is that he was IMing your MOM, complaining about you. ARE YOU KIDDING ME? You must have been furious. When you're calmer, please have a talk with your Mom and request that she re-direct your "significant others" if this should ever happen again. She should have said: "I'm sorry, ________. Please let Chrissy know directly what you are feeling. I will not be in the middle of your relationship." You must feel a little betrayed by her as well as him.

Your young man sounds VERY needy to me. I think you are better off without him. I know it doesn't feel that way now . You are wonderful & someone who is willing to take the time to learn all about the real you is around the corner. I suspect you can do better.

BTW, I think it's great to keep the "Happily married" and "Happily-in-a-relationship" categories for your poll. It IS possible

Big Hugs-

Julie

[Noreen]

" Part of me knows that relationships take work and that you have to adjust to each others habits and schedules. But the other part says he's gonna be more stress in my life that I really don't need. I could use some advice." Thanks Chrissy.

Chrissy-

If he was sitting playing on the computer while you did cleaning and organizing, I am of the opinion he is going to be a lot of work and a lot of stress. Why didn't he help cook dinner and then he wouldn't have to complain (BTW as a guest, he should have had just a little of whatever, a piece of bread and kept his mouth shut - there is no reason you and your mom should have been tryng to cater to him). He hasn't grown up yet and does not seem ready to take care of himself fully - you don't owe him constant entertainment, custom meals and a constant sunny smile. His IMing your mom is just another indication that he is not ready for an adult relationship.

((hugs))

[houswoea]

sorry about the man trouble! But one thing I have learned in this short experience about dysautonomia and any kind of relationships: if they can't tell you when they feel burdened, they can't handle your issues. Only a personal experience though, I could be wrong! And plus, I'm only a junior in college, so it's not like I have years of practice in this area. But do take it into consideration.

But I wanted to say that I am "other"... I haven't attempted having a boyfriend since I got sick because I have enough struggles with my girlfriends and my family. I couldn't handle a dating relationship. So you should add it as a choice

[potsgirl]

Hi Chrissy,

Sorry I went overboard on your rant. Your message went flying by me as I got all indignant. I do think we need to work hard at not excluding men, and you did have a really rough time with your old boyfriend. But as many others have written here, it sounds like he wasn't mature enough for a solid relationship, anyway. It doesn't take the pain away, but I'd bet there's a really great guy out there for you that will be full of understanding and support. When you find him, let us know!

Cheers!

[MomtoGiuliana]

Completely agree with the advice you have received. Long distance relationships do not reveal all the facets of someone. Just like dating someone and living with someone can be entirely different! This young man sounds immature as others have said. Involving your mother to the extent he did in a discussion that should have been between you and him is one indicator of that. His desire to be catered to, another. A person who cannot take care of himself can't take care of someone else either.

I do not think all men are like this--or can be stereotyped. There are all kinds of people in the world. It's hard to have that perspective tho when going through a rough time in a relationship or through a break up.

It is always very tough when something we think is going to work out doesn't. Be easy on yourself. In the long run, it certainly sounds like a relationship with this person would not be healthy for either of you.

[Heiferly]

I was expecting something entirely different when I came into this thread, quite honestly. Chrissy, it sounds to me (and I could be waaaaayy off base here because I'm just reading a couple paragraphs off the computer) like this problem actually had relatively little to do with your dysautonomia; the bulk of it sounds like a problem with maturity on the part of the guy you (are/were?) dating. I hope that doesn't come off as harsh ... in a way maybe it can be a relief, because if the problem lies in him, then it's nothing to do with you or your illness, and you don't have to lose hope that you can find someone who will complement your life well and make you happy!!

I've been with the same guy since 4.5 months after I first got dysautonomia. I would be a HUGE liar to say that it doesn't put a strain on our relationship; we're in a rough patch right now. But as the years have gone by he has proven to be everything that I could ever hope for and more in a best friend, a lover, and a caregiver. Those are big shoes to fill, and it's no surprise to me that external stressors take their toll on our relationship from time to time. Even so, I believe it is possible to find a "happily ever after" ... dysautonomia be darned!

[skiberthoud]

Communication is key to any sucessful relationship. If there can't be honest, open communication, a healthy relationship can not last. That means that "expectations" need to be discussed openly. We all have expectations of the other person, but very rarely do we tell them. There is a wise proverb that says, "Expectation postoned is making the heart sick." My husband and I had a long distance relationship (we were friends and then i moved and realized i missed him too much...) and while it can be hard, it can work as long as you openly communicate, about everything! I hope the best for you. I hope you find peace in whatever decision you make!

[nmorgen]

Ok, first off we are only hearing oneside of the story. You seem to have been offended that he didn't help you organize and clean your parents house and help you and your mom with your business. I'm reading between the lines but your comment about it seems a little resentful. Honestly, you need to talk to him. Let him know that it bothered you that he didn't help. Find out what you did that caused him problems. If you think that a relationship wont bring stress then you are wrong. All relationships need continuous work and they can be stressfull. Maybe you aren't ready for a relationship yet. Good luck.

[Birdlady]

Every relationship (whether you are sick or not) has up's and down's and can fail, so I'm not really sure how to answer this poll to be honest. I've been married for almost 7 years now and have been sick with POTS the entire time. I just didn't know what was wrong with me back then! I've gone through times where I'm better and then worse. Of course it can create problems, but if your spouse/bf/gf/partner loves you then there are always ways to make it work. Lots of compromising happens. Sadly over the years my husband hasn't been feeling so good either, but we try to support each other. When he was healthy and I was sick, sure he didn't understand sometimes. Now he's pretty much amazed at what I can still do with POTS. There are days he's sicker than me!

[blueskies]

Over time, I've blamed a lot of things for the problems in my marriage. POTS was only one thing, I've realized. Now, my opinion is that it is always more than 'one' thing. All relationships take hard work as far as I can tell. POTS makes life difficult but the way I see it everyone seems to have something that makes life difficult in one way or another. It's all relative.

blue

[sandymbme]

I was really torn as to which answer to give to this poll. I ended up with "in a relationship with more ups than downs", because my current relationship is pretty darn good, despite me really struggling with my health from day one. BUT, I got married 5 weeks before I initially got sick, and that marriage quickly crumbled, in large part due to my illness. My ex-husband was intrinsically a very selfish person, and when I required care, he could not provide it. And prior to dating my current boyfriend, no one had been able to handle it. As Dr. Grubb told me shortly after my divorce "Oh dear, it's not your fault, men just don't handle illness well." And experience has proven that to be true, for the most part. But my boyfriend and I have been dating for a little less than a year now, and he has been supportive and kind, and my health is currently the worst it has ever been. So I think the answer is, men (or women for that matter!) CAN coexist with Dysautonomia, but it requires a lot of maturity, compassion, kindness, and empathy.

Chrissy, it sounds like your boyfriend is in VERY short supply of those attributes, and the sacrifices required of you to make the relationship work would require energy that you don't have to spare. It is hard and scary to face POTS alone, but trust me, so much better that than trying to feed a self-destructive relationship and try to take care of yourself. The best thing that ever could have happened to me was the end of my marriage!

Good luck, and be strong!

Sandy

[goodnuff77]

I can say I'm a man with POTS and my wife that struggles with my illness. She dosen't understand everything that goes along with this illness and get's very frustrated. Sometimes she treats me like I'm making it up. The statement's about men not dealing with illness well is insulting. POTS affects both men and women as do most illnesses. I think it's hard for anyone, male or female to deal with their mate being ill.

[Clairefmartin]

((((Chrissy)))))

So sorry you are dealing with this disappointment. Relationships are tough in the best of circumstances, BUT you were dealing with a long distance component, not to mention your illness. My thought is that he was in love "with the idea" of you, without realizing what he was really getting into. I'm guessing you felt the same way about him. When you date long distance, you have the opportunity to only show the best part of yourself....which worked fine until you couldn't sustain the image.

The thing that bothers me the most is that he was IMing your MOM, complaining about you. ARE YOU KIDDING ME? You must have been furious. When you're calmer, please have a talk with your Mom and request that she re-direct your "significant others" if this should ever happen again. She should have said: "I'm sorry, ________. Please let Chrissy know directly what you are feeling. I will not be in the middle of your relationship." You must feel a little betrayed by her as well as him.

Your young man sounds VERY needy to me. I think you are better off without him. I know it doesn't feel that way now . You are wonderful & someone who is willing to take the time to learn all about the real you is around the corner. I suspect you can do better.

BTW, I think it's great to keep the "Happily married" and "Happily-in-a-relationship" categories for your poll. It IS possible

Big Hugs-

Julie

A big old "I agree and don't need to repeat Julie!"

Sounds very very needy. My husband being so domestic (he's from Germany, men do chores there!) has been a huge plus for us (me specifically), and his laid back self sufficient attitude and nature balances out my Type A-ness, plus how needy I am now that I'm in a major flare up.

Anything that bothers you gets magnified by 2 milion when married, or living togther, so GO WITH YOUR GUT!

-Claire

[Trach]

My husband keeps waiting on a cure. Although he has done his own POTS research, every new doctor I plan to see he will ask "will this doctor cure you? ". (he knows it is not that simple). And then he usually goes on to talk about how the last two years of my homebound life have been a waste. I don't particularly see my life that way, but my husband does. Thankfully I have a loving family and great friends.

For most of our marriage I worked, helped to take care of our kids, and volunteered. When our youngest daughter got sick, my husband and I fought for the first two years of her illness because he didn't think she was that sick and I was enabling her. As he finally started to accept her illness, I started to get worse. On top of all of this, my mother had moved from Dallas to help me with our kids after my father died. Two years later my mother was diagnosed with early onset moderate dementia.

In my husband's job, he makes decisions about peoples lives every day. He is in control. He is so frustrated that he can not "control" my outcome. To make matters worse he grew up in a family that firmly believes in "mind over matter". I really do not know what is going to happen in the future. Hopefully I will find that cure

[Elfie]

As far as I know the original poster no longer needs advice since this thread is over a year old.

That said, it is a generally good topic (not the potential man-bashing component-- but the spouse/partner/dating angle).

I think that married or otherwise "partnered" POTSies can definitely relate to the stress that POTS can cause both members of a couple.

I also think that these stories can remind single men and women not to settle for someone who is not truly looking to be in a healthy realtionship and willing to deal with all that it means to support someone with chronic illness. Those that are single or dating need to watch out for partners that prey on the lack of confidence and self-esteem that can come from chronic illness (esp. feeling like the "lesser" or a "burden" in a relationship). There are some people that are willing to take advantage of the chronically ill and it is important for everyone who is single or dating with an illness like POTS to remember that they are as worthy of love as anyone else and not to put up with a partner who is controling, selfish, or using you for (insert it here: attention, physical affection, money, a place to live, to feel better about themself, ect).

[ramakentesh]

I a male with POTS. this line made me laugh:

In my husband's job, he makes decisions about peoples lives every day. He is in control. He is so frustrated that he can not "control" my outcome

Sounds like me to the n'th degree. But I havent been able to control or convince my body to work normally yet

[Trach]

Rama,

So can you please somehow explain to my husband that I cannot control this? .

[ramakentesh]

LOL I could try.

[spinner]

My wife didnt believe I was sick and she is divorcing me against my will. So I guess the answer is no to answer

your (sexist) question literally

[gjensen]

Thus far, my wife has been great. A year into this, and she is as patient and giving as ever. I am very thankful to have a partner through all of this.

It probably helps that she knew me for 20 years prior to becoming ill. She has seen me on both sides of the hill.

I have seen a variety of reactions from more extended family. I can see that some would not handle it well.

I have been "one of those men" that would have wanted to "fix everything". This illness has been a lesson in humility. No amount of will power or control has dug me out of this one.

[looneymom]

This illness has made my son more humble and mentally strong. If he gets over this, he is going to be a great husband and family man. Having a spouse that is understanding is so helpful. So glad that you have that support Gjensen. POTS is more common in females than males. However, I wonder which one recovers more quickly? I have not researched that one.