Your Husbands Response

[gertie]

I've been having migraines almost every morning this week & because I'm so miserable I usually make some remark to my DH about how "I can't see" or "oh no, not another migraine". I go on with my day & never mention it again. With everything that goes on with dys. I feel I do well. I'm getting the feeling he doesn't want to hear about my problems because he can't do anything about them. He listens to his friends complaints & thinks their aches & pains are terrible to endure yet they are able to keep on with their normal lives.

I told him I don't expect him to do anything but that I need someone I can talk to occ about how I feel. I do not discuss my illness with others because I've found over the years everyone is like my DH, they don't want to hear it. Maybe it's because we're old & just get on each others nerves.

Do you tell your DH when you're not well or suffer in silence? thanks.

[firewatcher]

Alicia,

I suffered in silence for many years. It wasn't till my "big crash" that he understood how long and how badly I'd been suffering. I really don't think that unless he has also suffered with something as debilitating long term he can't know what you are going through. I tell him only when I'm feeling really crappy since I just feel normally crappy most of the time. I come to the forum for support and understanding, and try not to burden him with the everyday ugh. I am about to try out a chronic illness therapist (we'll see how it goes) because I feel like I need an impartial, logically thinking professional to help me make a gameplan for my time and energy. My workout partner has MS and we have both complained that our PT just doesn't get what it is like to have a chronic, fluctuating illness, even though she works with MS/physically challenged patients. It is an understanding that we just can't give her unless she suffers from something like it. It is like trying to explain what it is like to have a migraine, unless you've had one, it is so all-consuming you can't understand it.

[delphicdragon]

I'm not married, but I'm going to comment on this thread anyway. I've been dating a guy for about a year - he knows about my limitations. I try my best to push through them and not complain. He knows I go to get IV saline once a week and can see how sick I get if I push myself too far. I like to go to the gym with him, but if I jog too much and start to get chest pain I get incredibly pale and more than once he has offered to take me to the hospital instead of home just because I look that bad. He understands (I think) but I try not to complain. He's seen me with multiple joints out of place and with an asthma attack. I think my attitude helps him deal with it - most of the pain I try to laugh about and I only complain if it's really bad. I know that he really cares about me and loves me but he's always known me "sick".

On the other hand, my mother is the exact opposite. If I tell her I'm having a POTS attack or that I need to lie down or that I popped a joint she gets mad at me. I think the fact that I do have so many issues upsets her because she doesn't want to see her daughter in pain or not well. I think your husband may fall into that category - he loves you a lot and doesn't want to see you hurt. Mom saw me before I got bad (though I have had POTS all my life) so she's got a different perspective and it's hard for her to admit that I'm not going to go back to the way I used to be.

Sara

[mvdula]

My DH is definitely like that....I guess he feels he can't do anything about it - he'd rather solve it but can't. Also, in the past, he has seen it as complaining. I always joke that when God made him, He forgot to add sympathy.....he is not exactly sensitive and sympathetic. However, we have had many discussions about that since my Dx, and he is much better than he used to be. He realizes he needs to work on that and tries to listen and be understanding.

[potsgirl]

I have the opposite issue. My boyfriend is very concerned about my health, and asks me about it at least once a day. I'm so very lucky to have a man who's so compassionate and sympathetic, but sometimes I just really don't feel like talking about my health. I feel pretty much cruddy every day, so there's no big change on a day-to-day level. When I do have some odd reaction or something significent changes, I feel free to talk to him about my concerns. He takes off work to help me get to my appointments, and does a lot of the chores I can no longer do. I feel blessed.

[gertie]

Most of the time I try to act normal. My DH definitely doesn't fit into the sensitive & sympathy category. However, if he gets a headache it's a major problem. Thanks for your support.

[janiedelite]

I'm pretty fortunate because my hubby is happy as long as he stays fed (really any food will do) and we can be intimate occasionally. However, when I started getting really sick in 2008, he went with me to most of my dr's appointments and helped me do anything that might get me better. When I just continued to get worse, he became despondent saying he felt like he was losing me. A couple of times, he got angry with me, telling me to just tell myself to get better. Then he'd apologize, admitting how helpless he felt. My body was going haywire, skin was burning horribly, and I was so fatigued. It felt like my illness was not only threatening my health, but also the bond between my husband and I.

My mom is very supportive, being disabled herself with cancer. But her health is fragile and I didn't want to burden her with all of my complaints.

I ended up looking for a therapist I could talk with about chronic pain and illness. I saw her weekly and spent most of the session talking about my pain and how I was handling it mentally and emotionally. I saw her for about 8 months and stopped going after I got back from Mayo with a diagnosis and treatment plan. I believe that having this outlet really helped our bond to strengthen because he wasn't burdened so much and I still could work through my pain.

I think it's just built into most guys that when they hear a problem, they want to come up with a solution. My father has repeatedly commented on how depressed he's been, having to watch his wife grow more ill with cancer and watch his once-vibrant daughter struggle with pain and fatigue with no end in sight, and he can't do anything to help. I'm not making excuses for your husband, but I've seen my mom get sicker and know how helpless loved ones can feel. I think it's sometimes worse to have to watch someone you love suffer, than to go through the suffering yourself.

[janiedelite]

Most of the time I try to act normal. My DH definitely doesn't fit into the sensitive & sympathy category. However, if he gets a headache it's a major problem. Thanks for your support.

Oh, I'm so sorry that he doesn't offer any support. How horrible! I've asked my hubby how he'd feel if HE were the one disabled with chronic illness. First, he jokes about how nice it would be to stay at home, but then he honestly admits that he probably wouldn't want to live . He's also one who feels his world should stop if he gets even slightly ill. Last fall, we both contracted food poisoning. His lasted for 2 days and mine lasted for 6. I didn't even know I was sick; I just thought that my POTS was flared up and then he started in with the same symptoms ! I'd been running around, feeling ill, but isn't that normal? As soon as he fell ill, he was in bed moaning and telling me how he didn't know how I could be so sick and hardly even show it.

[lmt033167]

sometimes empathy from others, the ability to feel what we're going through; doesn't happen until they're going through something similiar themselves, which is unfortunate

I could have written your post and have broached this subject several times - I suffered for over a year with some 50,000 + pvcs and heart problems, have passed out for awhile continually, when my heart stopped in Feb 09, I started getting really concerned, but I was still "over exaggerating" to my family.

It wasn't until I had heart surgery in August and found out how severe my ANS problems were and that my heart stops when I pass out, that they started to get concerned. Since then, it's been a down hill climb - they were concerned and now it's like WHEN are you going to get better, you're always sick etc etc you all know the drill

I suffer migraines too, sometimes days on end and have to just deal with it, yet my husband got his first migraine last month and he took off work and stayed in bed all day.

I've found this forum a great place that others understand how I feel and I don't feel like all I'm doing is griping about how bad I feel

[gertie]

I'm sorry for everyone that suffers with this illness. I guess we're the only ones that can truly understand what we're going thru. I do know if it was my DH that was experiencing these heart problems, passing out, migraines, nausea, stress, etc that I would be worried about him & I'm sure you would feel the same if it was your husbands, but it doesn't seem to bother most men at all. Maybe we need more testosterone. Thanks.

[blhorn]

My HR is similar to yours. Although at the beginning he was very supportive, now 4 years later he has become tired of POTS etc. and hearing about POTS etc. He especially complains about the brain fog I go through. I feel for you, hope it gets better.

blhorn

[MomtoGiuliana]

My husband is supportive. He gets annoyed with me if I display what he feels is a "bad attitude" towards it. I admit I do get down sometimes. He's not too into emotional support. He doesn't like to hear a lot of details. But if he knows I am feeling especially poorly he will be compassionate and will do things to help me. Yesterday he went out and bought 6 liters of coconut water after I mentioned that I thought it was helping me thru my current flare up.

[Brye]

We just had this discussion tonight. I suffer in silence and pretend all is well! Then I usually have a big melt down all at once about how I have been suffering in silence and he feels all guilty about it. He is a work-a-holic and sharing too much info just makes him feel guilty and helpless. Then he tries to adjust his schedule a little bit and that usually lasts a couple days until he figures out he can't keep up. Then it's back to suffer in silence. I have been approved for SSdi though so that money goes to my medical bills and extra help to care for my kids. That way I get the help and he feels less guilty! Works well for us!

Brye

[maggie]

I'm very blessed to have the husband I have. I have had pots for four years now and he has always supportive. Through the 38 years of our marriage I have supported him in his business where he works long hours and now he feels it's time he returns the support. He still works long hours and the days are long for me, but I have been fortunate that I am able to do small things most days with my pots. He calls several times a day to see how I'm doing or just to chat to pass the time. If I'm not able to cook that day he brings home dinner. He has taken over the chores I'm no longer able to do. I thank God every day for this wonderful blessing in my mate. It would help if we could have support groups where our mates could see others who suffer from this and see they're not the only ones who are caregivers. For those who don't get support my heart goes out to you, if it were not for my husband I know having this would be much more difficult.

Maggie

[Guest tearose]

I too have a supportive husband of nearly thirty years. I really put us both through ****(the opposite of heaven) with my last relapse which was made worse by the "ripping apart of me" by going through the disability process. I think disability puts even the angels and saints through ****(the opposite of heaven). A spouse doesn't know how to help sometimes.

Well, we made it through the worst and are stronger and more in love than I could ever had prayed.

It still is hard sometimes, like right now I overdid things and it got hot and I am fighting to avoid relapse. He is not the flowers and candy mushy kind of support but he gives me in his actions and words what I need. Just last night for example, I could not cook last night and in rag doll mode said to him "I am such a mess". He said lovingly "Yes, but you are my mess".

I am blessed to have found my "soulmate". I only hope he knows in every cell of his body and soul how much I love and appreciate him!

[erik]

I'm mostly repeating what is already said (and perhaps slightly off mark too), but I have a general comment loosely on the topic:

A complaint to a loved one (or one who loves you), can kind of cut either way. It can indirectly feed that feeling of inadequacy on their end. They love you, they would love to help, but they are powerless to do so... hence their frustration at being reminded of this powerlessness repeatedly. It is also painful to watch another person suffer. Sometimes I think watching suffering can be worse than doing the suffering yourself, depending on state of mind and circumstance... like how "anticipation" can be greater than "the thing" itself (for both good and bad things . If they know how much it helps for them just to listen... that can work out I suppose.

Seems to me that some folks are more "doers" and less "listeners" (tends to be we men folk) and can get frustrated at not being able to "do" something to help. "Listening" is not "doing", it is a passive act. At worst, one can then end up feeling guilty over this "inappropriate but understandable irritation" which just makes matters worse.

On the other hand, I suppose plenty of folks thrive on sympathetic expression and that facet of intimacy. I guess you just have to try it, see how it goes, and maybe pick'n'choose when & how to complain. Be cautious of timing. Complaints that happen to be timed around unrelated "requests" can be easily misinterpreted as manipulation.

[bizbiz]

My husband does try to be supportive, but I know deep down he wishes that I just 'got on with it' or 'push through it'. And while this has been the cause of many, many fights in our household, unfortunantly I also understand that unless you have experienced an 'invisible illness' for yourself, you will never know what it is like to live with one. No matter how many specialist appointments he goes to with me, I just dont think he will ever 'get it'.

He gets very frustrated with me because I look the same as I always have - I can tell him that I am very weak, extremely fatigued and so brain foggy that I dont even know what is going on around me, but if I am walking and talking then he doesnt think that it could be that bad. If I mention that I am feeling tired, dizzy and disorentated, he will respond by telling me that he is tired too, but that he is just strong enough to push through it It is usually at this point that things turn into an argument.

He also gets frustrated when we cant live our lives like we used to before I got sick. While I try to live as normal a life as possible, there are still many times that I have to say no to going out due to feeling too unwell, and most of the time this means that he misses out too. Sometimes he tries pushing me to do things which I know I just cannot do at this stage, and this leaves me feeling very resentful towards him, and also very sad that my life has changed so much.

But while emotionaly he may not always be the most understanding, physically I know I can always count on him - he doesnt really like my horses, and yet he is there everynight after work cleaning the paddock for me, or moving heavy hay bales etc, and for this I am very grateful.

For me, I just have to take the good with the bad...

[futurehope]

The biggest help for me in determining "what" and "how much" I share about my troubles, is to "pretend" I am the other person. IOW, if I were my husband (friend, relative, child, etc.), exactly how much would I want to hear about me?

So, if I'm honest, and I pretend I'm one of my healthy friends, I realize that I would not want to listen to anecdotes about me, especially if there was no end in sight.

I don't know if I'm making sense....but, what I'm basically saying is, it's tedious and boring for a healthy person to hear about all the difficulties I face, especially since there is no visible improvement. I've said this before, I get bored myself talking or complaining about something that I cannot change. I prefer to ignore it to the best of my ability.

I'm not advocating being a doormat. If I were doing poorly, and couldn't handle something, I would say so. But, on a routine basis, most people want to get on with their own lives, and unless they are in a helping profession, like home health nurse, psychiatrist, etc., most people can only listen to problems so much, then they "turn off" in self-defense. That's how I see it.

ETA, even if the other person is displaying caring towards me out of a feeling of love (IOW, they are NOT in a helping profession, but are emotionally close to me), I can only be the recipient of those gestures up to a certain point. After a while, I would think "enough already". Let me have some independence to live my life as I see fit, minus the pity, thank you. I may have problems, but I am capable of making decisions concerning the help that I need, and I will ask if I need something. If I don't ask, assume I don't need your help.

[lmt033167]

Having a chronic illness and suffereing through it is enough and if we don't have the support of our family and friends it can leave us feeling lonely and like no one cares.

Being sick makes me feel weak and helpless, I can't even drive or walk, can't stand or sit for certain times, can't exercise or go to the beach anymore, I can't run around and play ball with my children, heck what's the next step, someone going to wipe my rear for me? lol sorry you get the point. Don't get me wrong, my husband is a wonderful man, he's just a bit obtuse about things sometimes, he's never had any tragedy or anyone close to him be chronically sick that a doctor can't 'fix".

Here's an example - for 2 years before our youngest son was born, I worked 8 - 9 hrs daily, drove 30 min to take our oldest 2 from and to school; then drove an hour to work, after work drove an hour to YMCA afterschool care, drove 30 min home; hubby cooked dinner M-F; I cleaned up the house and helped kids with homework, then walked for 30 min before taking a shower, on the wknds I cooked & did all the yardwork and billing for our business; we never stopped - we took the kids shopping, disney, museums, zoo's etc.

Up until I got sick in Jan 09, I still did all of this except I worked in our home with his business and mine. The older 2 children left home, our youngest son is Autistic and he's had 15 therapy sessions weekly for 7 years. I've fixed houses, built fences, helped replace a roof, dug ditches, cleaned pools; I never get my nails done because they would be ruined in a day lol I've always enjoyed yardwork and mostly used a push mower [powertools muhhahaha]

I felt guilty about my husband being the only one outside our business working and have overcompensated for so much - and he got used to things the way they were. He worked and came home and had to do nothing, I did it all and you know what that got me? he resented me for always making all the decisions and taking care of everything I had no clue he felt like that and thought he liked me doing everything - it made him feel like I didn't need him; useless.

I told him recently, well you got what you wanted - you make all the decisions now and take care of everything, how does that make you feel? he's overwhelmed to say the least and not handling it well and told me he doesn't know how I did it all before

What do we do as the patients who are suffering, how are we supposed to teach the others around us about empathy and caring and that some symptoms are silent and that we may need them to listen even if they don't understand what we're going through, how do we do that without seeming to complain all the time?

Maybe our loved ones need to put themselves in our shoes for a day, week, month and see how they would feel if we didn't want to hear about it or be empathetic towards them...hmmm that would change the game plan all together I bet. If the tables were turned, I'm sure we would step in and do things differently.

For the most part, we know what feeling in good health feels, but someone cannot know what a chronic illness feels like unless they've suffered through it.

[potsgirl]

Your last line....I second that emotion!

[lmt033167]

You know the more I question myself, the more I believe I did this to myself; made myself sick - working 70+ hours a week and sleeping 2-3 hours max, burning both ends, just to prove something not only to my husband but to myself. Burning my body out so it couldn't heal and repair itself all for nothing

I even ruined a Christmas surprise a few years ago because I HAD to work and check orders on Christmas Eve after the kids went to bed, my husband asked me not to work, but I insisted it would only be a few minutes, and saw an email confirmation for Disney yearly passes

I set us both up for failure and for him to react just the way I thought he would - or maybe I wanted him to resent me and leave like everyone else in my life did, who knows - I'm beyond trying to figure myself out lol that's what I'm going to a psych starting next week for.

This got me to thinking; do you think we intentionally set others up by things we say or do around them so their reaction to us is what we want it to be subconsciously? i.e. I don't feel like anyone cares, so I complain about how I'm feeling to try and get them to understand how I'm feeling?

If this is the case, what do I do to get family/friends to understand the pain I feel and know how serious my illnesses are?

[futurehope]

lmt033167,

If I were you, I would not put too much time and effort into "trying to get others to understand". They cannot fully understand.

Now, I do not mean your problem should remain a secret. You can state what your needs are. You can request prayer. You should seek the best medical opinions possible within your budget. You should learn all you can about what to expect and how to help yourself.

Truly, suffering is an alone experience. Would you really want someone else to suffer with you in empathy? Not really.

But, you do need them to take you seriously when you state that you need help, or that you cannot do something.

Considering that your spouse has seen you burn the candles at both ends, it may take time for him to realize you are not the same. It's a major adjustment for him as well as for you.

All you can do is be honest, without complaining, and wait for him to adjust. You may also want to take him along to doctors visits, or show him results of medical tests. But, really, he cannot fully comprehend your day to day struggles, especially since he remembers how you used to be. He needs time. That's my opinion.

You need time to adjust to your new medical condition. Others need time to adjust as well.

[lmt033167]

thank you futurehope - I understand he needs time, like I need time to adjust to the fact i'll never be the same, its frustrating and I can see why people with chronic illnesses may go through depression

I think I'm angry that he doesn't believe me when I'm sick - he's seen me right after surgery and what I've gone through for the past year or so...I guess that's part of what I'm going to have to talk to the dr for - I have to just get over it because he can't or won't understand that my body has betrayed me

I just need to find a way to help him cope with my changes, maybe I should take him to therapy with me

[Nikki]

I'm not married, but my fiance is very understanding. I was diagnosed in October of 2009, and since then I've only been able to get out to his apartment for one weekend. He comes and stays with me at my parents house instead. They're fine with it since they know I haven't been able to go anywhere for quite awhile. Being in the car makes me a lot worse, so we haven't been on a typical date or anything like that for such a long time. He really is fine with it though. Sometimes I will hesitate to tell him how I'm feeling when he asks (he asks a lot lol) and I always wish I could tell him I'm feeling fine and we can go out and do something..but that isn't the case right now.

We've been together for over two years now, and a lot of it was spent long distance. He knew I had dizziness and stuff for quite awhile, so this wasn't exactly new to to him. I'm glad when it got worse he stuck by me through it all and still is. I feel extremely lucky to have him.

It took me a while to be 100% honest with him when my symptoms took a turn for the worst, but I figure it's best to be honest. I can't help or change how I feel, and he understands that.

[futurehope]

lmt033167,

Obviously, in your situation, your spouse has seen you when you were fine. I'm in the same boat. I did quite a bit of stuff for years before POTS. My husband does not totally get it, but he's better than he used to be. It took years. Maybe, if he agrees to go to therapy with you a few times, he'll understand your struggles better?