Does Discussing Pots Start Arguments With Your Spouse?

[lillybits]

Any time my husband and I start talking about my health it usually starts an arguement. Seems like he doesnt think anything i am doing is good enough. I need emotional support not a what i should do list. breathing is hard enough for me on most days....I cant dissagree or get frustraited with this to or infron of him other wise he just shuts down and shuts me out.... I do the salt, fluids, excersize, meds and antidepressents because he thinks its because I dont deal with stress is why i am sick.. how does everyone else on here work together as a team???

[abbyw]

We have the opposite! I am beating myself up that I got sick because I can't handle my stress well enough. I feel completely inadequate and at a loss - why can't I just take life more easily. He says that I am doing eveything I can do and I should just accept things the way they are. I feel bad that he has taken over so much that I used to do. I feel like maybe I should push myself more. He doesn't understand why I feel that way. I am really lucky that he is so supportive, but I also feel not understood. I don't think he understands how frustrated I feel! Which makes me feel more alone - physically (he can't understand how I feel) and emotionally ( he is so laid back that he doesn't understand how I feel).

I realize that this was totally not helpful to you - you were looking for advice and I told you I have no idea how to help

BUt maybe it helps to hear that we are sort of in the same boat.

[hilbiligrl]

Well.... 90% of the time my 'significant other' is very supportive. My disease very rarely starts an argument. But when i'm down for long periods of time then he will throw out some very smart butt remarks about me being lazy or sick all the time. His remarks are hurtful and sometimes he can be in this mood for a few days and then i not see it for a month or few.

I am one of the luckier ones who has a mate that does take good care of me for the most part. But he can get mouthy and say means things about me being sick.... and it's always so unfair and hurtful. I'm pretty sure he says these things out of 1. ignorance 2. he, nor anyone can truly understand this unbelievable intense illness 3. he's a man..... 4. he gets frustrated and tired of it too (if he only knew how tired of all this I was.... if he only knew).

So..... that's about my scenario. He knows if he 'attacks' my illness that it really affects me, so he doesn't do it much, but even at that, one time is too much But he's good about getting most of my meds and bringing me home something to eat if there's nothing here that i can stand up to fix or grab.

He's 58 and i'm 34, we've been together for about 11-12 years, he is not the father of my kids, but he's been very good to my children and has always provided where their biological father never has. However, I seriously, very seriously, don't think a man my age could handle this disease.... a man my age to stick with all this would be a rare find for anyone my age with this disease.......

One more thing to point out: my SO has anger issues. So sometimes he like to throw temper tantrums...... which does not help me at all. But he has worked on his issues and I have worked on his 3 year old 'fits' not bothering me..... so as long as he doesn't lay a hand on me and all..... but his mouth can be quiet vicious at times just because something didn't go right for him.

I have no idea how to get it through our SO about how severe we are. I doubt we ever can.... other than pray for them to understand, etc.

Do you have any doc that understands the severity of your disease that your husband can hear from the doc's own mouth how band this all is? I took SO to a few doc appts with me, which helped him some. But im a very independent kind of gal and i never want anyone with me at doc appts, etc. I'm a bit of a loner...... lol.

Hope this helps in any way Hang in there lilly

tennille

[bellgirl]

So sorry Lilly; It's hard for them to understand, because it is an invisible disease. I try not to talk about it a whole lot anymore, but I did have him drive me to my doctor's appointments, (which some were 2 hours away), as Tennille said, and had him come in with me, so he would understand more fully what I was going through. I think it helped some...that's what we all are here for on this website to support one another, because you know we will always understand On Christmas day, I was very sick, and my family helped me. My sons even cleaned up the kitchen without me asking, but they are adults now, and they are more understanding, since they don't have to deal with me on a daily basis.

[jenglynn]

Hi Lilly... First of all... (((( HUGS ))))) It is hard enough to deal with this illness without having to deal with arguments with our significant others.

I began a thread last week about my hubby. Our issues are plenty...but mainly is he overreacts to EVERYTHING. Everything that happens, he is convinced I need to be hospitalized. I have a lot of syncope and therefore lots of times I've hit my head (on concussion 7) and he monitors every little thing I do. It drives me crazy a lot of the time. Am I drinking enough? Did I take my meds yet? Am I getting enough salt? You get the point. Also, I get the feeling that he already has me dead and buried and is convinced I won't survive this illness. He goes to the doctor appts. with me. He hears what I hear but at times he is so irrational. I want to get better more than anyone else but it makes it hard because I don't feel as much support from him as doom. I have been VERY sick lately. I just finished up with IVIG that ended badly in anaphylactic shock (didn't help that he was there to see that) so now we have to wait about 10 weeks to wait for it to leave my system. So now we wait until PlanB comes along and HOPE and PRAY that a better option is available.

Another thing he does is he is very critical of ANY time that I use researching my conditions or on forums. He thinks I am obsessing over my conditions and that just makes it worse. He doesn't get that it is the ONE thing I can do that makes me feel like I have some control or.... maybe not control but at least gaining some information and the more I learn the more empowered I feel. And I have learned 100X more from this forum and other sites than I have from any doctor or medical provider that I have ever met. I usually have to educate them! As many of you know, this condition can be very lonely, and it is helpful to be able to relate to others who can not only understand but empathize. I really hate the fact that you all have to feel the way I do... but it is nice to have someone to turn to when I have a new symptom or a bad day and have somewhere to go where people not only care, but understand. My husband is very critical of ANY time that I use online spent on studying or researching this condition/illness. He thinks I need to just leave it up to the doctors (yeah, because that is has worked out so well!!!) and that all it is doing is making me MORE anxious and upset and making obsess over a disease I can't control. I could see his point if that was all I did... but that isn't that case.

It can be very hard for us to deal with anyone who doesn't know how we feel. Because NO ONE knows how we feel. Even my husband, who is generally supportive, my family is very supportive as well as friends and even doctors for the most part... I still feel very alone and scared a lot of the time... because I live in a body that I do not trust and I never know what to expect from it from day to day. I never know if I will stay conscious from minute to minute. Not an easy way to live.

Jen

[rubytuesday]

I know how you feel, I do. I cannot say that DH is not supportive as far as doing grocery shopping (he'd rather go alone than have to try to shop and watch/worry about me going down). He sometimes is good to help as far as carrying laundry or helping put it away or 1/2 way making the bed (which I re-do). But other times if he hears the word laundry, he cuts out. Sometimes he'll fix light dinner (fry an egg or bologna or microwave or soup) and do dishes--other time, leaves dishes in sink. He takes me to the long trips to city specialists (hates to do that). When I had my first IV Ig transfusion, the doctor ordered it at a very slow rate, so it took 5 hours (plus 2 hours drive there and 2 hours back). He kept trying to get the nurse to speed up the rate since I was not having any reaction. We knew before we went it would be all day. He took me back to hemeoncologist at another campus site and told nurses and doctor yes it was my first trip there and it would be the last (construction--could not get to the building unless you could find parking in garage 2 city blocks away, walk in pouring rain to get into hospital only to be directed to the far end wing of hospital to get to hemeoncology unit). He even drove wrong way down 1 way street to drop me off at door while he parked in space he was not even sure was for that hospital building or not.

When I bring up anything doctor said, he disagrees (I cannot believe he interprets things totally different, but then he is not in medical field). If I tell him about near syncope--he scolds me, tells me to leave things alone, that I shouldn't have tried doing it (but things don't get done if I don't do it). If I discuss health, he shuts down--gets sharp with me--'I feel bad too but I don't go on and on and on about it'. Which I don't but I'm usually alone all day with no one to talk to. If I remind him of appointment (and I try to do that a week ahead of time and intermittently) that he needs to take me to (and many times he will ask and I will tell him), still the night before he'll ask again 'where is it we're going. . .which one is that. . .what time is it. . .'. He doesn't want to look at directions on mapquest or the campus website, (so I write them down) but night before or on the way he'll ask me where it is. I my mind's eye (and I could be wrong), with these specialists and being told certain conditions (EDS, Delta Granule Storeage Pool Deficiency) are rare, and this new Vocal Cord Dysfunction (upper airway obstruction), and having to be tranfused with platelets before even having a tooth extracted, and being transfused with human antibodies for life, taking medications for osteomyelitis for life, I think it overwhelms him. In some way, I wonder if he is afraid of something happening to me (because I worry about something happening to him).

So when he gets home at the end of the day, he's had the socialization that I haven't. He's tired from working and just wants to take the remote, lay back in recliner, snack and then maybe fall asleep. He suffers from depression and just weaned himself off his med because the co-pay with this year's insurance plan went up. He gets mean off antidepressant--I mean to waitresses, cashiere's, everybody (and he's a really good-hearted guy--good wit/humor) so I am trying to prepare myself psychologically to handle this til he takes the time to see his doctor and get on some generic brand.

My mother 'tries' to be supportive but her life is literally consumed with other siblings, nieces/nephew paracites. Our DS seems to care less--rarely checks on me unless DH tells him to when DH travels. I have a sister 2 states away who lets me e-mail her about appointments (I save the sent e-mails so I can refer to what the doctor told me at the visit for the times/things I forget). She's super. And then of course all the people here are so very supportive and good to let us get it out when we need to.

I tell DH (in front of docs/nurses) that he is my rock. I try to stroke his ego and give him support in that way. When we're both sick, we'll have a pity party and joke that 'they'll just find us dead in here some day'. I just try to make a conscious effort not to talk about how I feel. I think when I go from IV to the sub q Ig at home, by asking him to help me by sticking the needles (sites must be rotated) in places I cannot reach, for my infusion, he will feel like he is doing something that is helping me. Right now I think he feels helpless deep down inside. And men are supposed to be heroes.

[peregrine]

My partner of 8.5 years and I have some troubles around my dysautonomia - he is taking a while to adjust and we've been going to a couples therapist over it (she's been most helpful). My problem is that I cope by talking about things, discussing stuff I've read, telling stories about how I feel... all of which disturb and upset him. If I joke that it could be worse he just gives me this sad look like the world is ending. Couples therapist tells me I need to make my disabilities take up less space in the relationship - which I agree with - and to talk about it elsewhere and go out to dinner with our other housemate (who has chronic migraines and is used to such talk and enjoys it) and talk with her about it. Hopefully this will help some - just started.

[cyndi75rose]

I have been having huge issues with my husband since getting diagnosed. Well we have had some issues the whole marriage, but not this bad, but he is definately not a caretaker. I have had issues my whole life and we have been together for almost 14 years, so he has seen it, and lived it with me, but it has been getting worse in the last 3 years or so, I had my third child three years ago. I am having more and more issues. More fatigue, more episode, more problems. I never pass out and I am mostly fuctionable so I think he just thinks I am faking it or something. I don't know. He seems to discredit it. Almost like my dysautonomia does not exist. I just had the positive table tilt test in January more of less finally proving something is actually wrong with me and for me it was like finally, see I am not crazy, I actually have these issues. For him its like, no big deal. Like so what? If I say I am tired, its why?, or I am dizzy, he says "again?" Like how can this happen. My husband is a health nut and exercises all the time, runs marathons, and believes that everything can be solved or fixed just by exercising and fat people are just lazy. I have gained quite a bit of weight in the last three years. It ***** for him and it ***** for me too. I want to loose the weight. but its hard I think part of it is, I feel like crap all the time. Exercising is usually so hard if not impossible to do. He uses the attitude of I just need to try harder. I think he thinks if he gives credit to the fact that exercise is extremely hard then I will quit and continue to gain weight. Like use it as an excuse to not exercise. I don't know. I work full time and have three children 12, 10 & 3. I am extremely exhausted. I don't sleep well. Exercise HOW??? All I know is I feel like I can't talk to the one person that I should be able to talk to. I just sometimes needs some comfort or even acknowledgement that maybe it is harder for me. I just want him to realize that this is a huge chronic issue that I have and his help and support is needed. I don't want a pity party but something would be nice. I just feel really alone a lot and I don't want it to destroy this marriage, I love my life and I love him, but I am seriously getting more and more angry at his attitude and it is causing a lot of stress and arguments.

[bellgirl]

Just do the best you can...marriage is never easy, but with a chronic illness, it is even harder, and then you enter 3 children into the mix, and it seems overwhelming!! If you truly love one another, it will work out. At least you were able to get a diagnosis, and that should give you some validation. Are you on any medications to help with your symptoms? That should help with fatigue; also, believe it or not, exercise will make you sleep better and should help with fatigue, as well. Start out slow, and show him that you are trying. It also is imperative for your health, even though it seems impossible to do...it helps with the blood pooling, which causes a lot of the problems you are having with fatigue. I will say a prayer that your illness won't be a point of contention in your marriage, that he won't disregard your illness, and that you will continue to get support from those of us on this site that completely understand your plight, because we are also living with this condition. Hang in there...and start to slowly exercise...walking is a good start

[Elfie]

I was in a relationship when I was diagnosed. Although me feeling poorly prior to being diagnosed did lead to some arguments, after diagnosis everything went downhill. Suddenly he didn't see the end of the tunnel of having to be supportive-- I was diagnosed with something that had no "cure." My diagnosis also really laid all the cards out on the table as far as explicitly pointing out what I needed help with and should and shouldn't be doing (stuff I already instinctively knew, but had nothing to back up). It meant that he had to step up to the plate in some areas, which unfortunately he wasn't willing to do consistently.