Has anyone had problems with spouse supporting them? I was in bed for a long time because of heart and blood pressure problems and other things.
almost died this time. I'v had lyme 14 years I thought my husband was supporting me but he told me he wished I would die and get it over with.
He was thinking that the whole time he was taking care of me. that hurt I would never be that way to him what ever happened to in sickness and health.
Let me know if anybody else deals with this? Posted by randibear (Member # 11290) on :
yes, marlene, i do. my husband told me almost the same thing, except he worded it "i wish you'd get a terminal illness then you'd have something to _itch about." and believe me, that has been one of the kindest things.
i've learned to never discuss my illness and when i'm in pain i say nothing.
i buy my meds and see my doctor without telling him.
it saddens me that i have to do this behind his back, so to say, but i have to, i have no other choice.
geez, i wish i knew what to tell you.
he's perfectly fine as long as i don't discuss this. but like i told him one day, "what goes around comes around and some day you may be sick, and then we'll see what happens".
i can't help, it takes a toll, it really does.
if it weren't for ya'll here, i'd go crazy. i have absolutely no friends here so i'm alone.
i bless each and every one of you.
Posted by tenyears (Member # 11613) on :
I feel the same way so lonely no friends. I almost think it would be easier to be alone and deal with this.
I feel like crap and it only seems to get worse my husband has told me you can't leave who would ever want you. but you know down deep inside there are kind and caring women and men out there.
I do the same thing you do I don't say to much anymore I suffer in silence (hope that makes him feel better). I wish I had your number I could use a friend!!! This is the worst thing ever do you have children at home?
Mine are grown otherwise I don't know what I would do.
Posted by ping (Member # 6974) on :
Marlene and r'bear:
There are more of us in this tragic situation than known here. Even once I was in remission, I found myself in MiddleEarth. Still estranged from The Completely Healthy, as these illnesses change you forever and hesitant to speak too much to my Lyme friends about my recovery because they weren't in as good a shape as I. To be reminded of the way they used to be would burn them to their very soul. Consequently, here we are...
For so many of us, LymeNet is our home away from home. At least we have each other here. We're not alone.
Posted by randibear (Member # 11290) on :
i have never had children, always had a career, college, etc., and my family. well when mom died ya'll know what happened to family. "you're not welcome here anymore", yeah, right.
so now i tell people when they asked about my family that i have none. it's true, i don't. i have a husband.
sure things are great when you don't mention your problems and only discuss what he wants to, which is usually hunting, fishing, airplanes, etc., otherwise i say nothing.
i've sort of gotten used to depending upon myself and being quiet. at least i know that if something happens to him, i'll survive.
and that's what we are -- survivors. we're just like cancer or other patients, no different. we're all in this together.
if i didn't have this board, i'd been in deep doodoo, that's for sure.
there are no support groups around fort worth but luckily my doctor is about an hour away.
thank God for this board, that's all i can say.
Posted by Pinelady (Member # 18524) on :
Amen. Some men. HUMF. Those are the MEN I would like to see get drafted.
Posted by Rumigirl (Member # 15091) on :
OMG you guys!!! This is terrible. My husband is unbelievably supportive (except once in a while when he's had it), and even so it's unbearably hard. And I have a support group here, too.
Ten, there are quite a number of support groups in NY, please check it out to see if there is one near you. And, if not, there are online support groups by state.
Wow, I"m still shocked by what your husbands said---really CRUEL! And, you are right, there ARE people out there who would be supportive and kind, sick or not. So, if you're well enough to leave and are so inclined . . . I know it may not be so easy, esp when you can't work due to illness.
The other suggestion is to get some psychotherapy help, if you have insurance coverage for it or can afford it. Many therapists have sliding scales. Of course, it would have to be someone sympathetic to your illness!
Keep reaching out as much as you can. And, as Randibear said, what goes around, comes around.
Posted by Amy C (Member # 19297) on :
I have been on both sides of this...
Well my husband didn't support me or believe me for a few years. Then I got a diagnosis and he started to kind of believe me. He still struggles with the fact that I can't do normal things and tends to forget things that I need accomidations for but he is doing better.
I was ready for a divorce about a year ago. Though I can't work and have kids so I knew I couldn't really leave. But I was done! Then I realized that my kids have lyme too.
This made it even harder. He didn't want to believe that either. I forced him to go with me to doctors. This helped some. Other then that I just talked and talked and talked. Even when he didn't want to hear it anymore.
One day I told him he needed to decide if he was on board or not and that it wasn't going to just go away. I really think for him it was more a matter of him not being able to fix it or understand it or want to believe it because it would be too difficult.
Well I have been treating for 14 months and my kids 10 months and I have to say he is adjusting. We even travel out of state now to see a doctor. I never thought he would agree to this.
I think it depends on why they are not supportive. Some can change. Some can not. He never said anything mean to me though. That is just wrong! I am sorry you have to deal with that. I remember that feeling when he didn't support me and it was the worst feeling ever.
I did turn to the on line. He thought I didn't need him and only needed my on line friends and was jealous. I explained how they understand and supported me. Then told him if he would try to do the same as best as he can I wouldn't need on line support as much as I did then. So that seemed to work.
Like I said it was a slow process for him to come around. He isn't totally there but it's much better.
Oh and I did go to therapy. I tried to get him to go but he wouldn't. It helped me ALOT!
Posted by nefferdun (Member # 20157) on :
I am sorry you have to live with a very cruel disease as well as a very cruel person. That is totally unfair. I can depend on my husband but other than that I have no one. My family of origin is so sick I would never try to get any sympathy or support from them. My children are wonderful but grown up and into their own lives and problems. It is very hard for them to relate to a sick Mom. Because of the despair related to the disease I do not try to meet new people any more and seldom see the ones I know. People don't get it unless they really have it - they or someone they know is infected.
Posted by kareamber (Member # 20110) on :
I'm having issues with my husband right now too. I think his issue is he just doesn't understand how I can be well one day and the next barely get around. Sometimes I think he thinks I'm overexaggerating. Like you all said they can't really get it unless they've experienced it. I get so frustrated with him cause I can't talk to him about how I feel. It's like talking to a rock. He NEVER converts or responds. Its so annoying. He doesn't know how to console or confort either. I feel like I live with a stranger who has no emotions toward this disease. One time when we were arguing about something, he shouted, "It's JUST lyme and you're being treated for it!" Just lyme. He obviously doesn't understand how bad this disease is and that all people aren't easily cured. I made him watch UOS and he was nice for a few days, but slowly drifted back to him old self. He pouts if I don't have dinner made or the the cabinets aren't stocked with groceries. I think the big thing some of our hubbys is they don't know how to communicate their feelings. The one and only time that he really said something nice was "All I do know is, if I could take it from you I would." It was sweet and I'll never forget it. Wish he could be like that everyday. We are currently in the UK now on his military orders so I have NO family near so I really need his support. I feel SO alone at times. I've considered divorce a million times, but can't do it... I can't work and I have two kids. Guess I'll just have to learn to ignore it or live with it better.
Posted by springshowers (Member # 19863) on :
This is so sad to read. I am so sorry you have to be sick and on top of it be with your husband (who should be your support) and he is not supportive.
Its one thing to just be neutral but it sounds like he is being downright cruel.
Keep talking to others and I hope that is helping.. Such as this thread..
Keep contacts to the outside world and to those who do understand.
Everyone is there for you..
: )
BIG BIG HUG
Posted by sixgoofykids (Member # 11141) on :
I am moving this topic to General Support and closing the thread in Medical. If you are in Medical Questions, look at the top of the thread on the left above you name and there is a link.
Posted by the flim-flam man (Member # 23310) on :
Can a man chime in? Some of you may know my situation, most probably don't, since I am new here. I contracted Lyme in 1989. Diagnosed in 2001. When the disease was yet to be diagnosed and I was really sick, I was fired from my job. Everyone, family, friends and wife thought I was lazy, didn't care, didn't want to support my family, basically gave up on life. The SECOND the doctor told me I had Lyme, my wife turned to me, tears in her eyes, and said "I am so sorry". Neither me or my wife know a lot about Lyme, but we know it's bad. She is VERY supportive. Although, she does get frustrated having to explain certain things I don't comprehend. I think my good days are taken for granted and when I have a bad day, she again gets frustrated. Lyme is a very cruel disease, her support is the best medicine I could have on a lot of days when I wanted to give up. Find people who will support you. There is no way I could fight this thing alone. Don.
Posted by aliyalex (Member # 6976) on :
whoa, this is way too familiar. for yrs people said to me, "some people can be caregivers and some people cannot." i figured maybe it was the luck of the draw or something.
then my husband of 11 yrs checked out. he couldn't do "it" anymore. he told me i was afraid of life, i was ambivalent about life,-just as cruel, but in a mind game sort of way.
after he left (and btw had a girlfriend in 3 weeks) i started to realize that he, like most people, esp men, have no clue that they have needs, what they are or how to meet them. i started to realize that he really couldn't do it. he was dying on the vine, too.
being a psychotherapist helps, and having done a lot of work myself.
and i realized something else very important. we people with this illness, we survivors are growing internally and sometimes we grow past our partners and they dont see it and say mean things to us to make us feel smaller. they dont know they are doing or why. nevertheless it is very hurtful.
the other day i was making an appt with the llmd and the gatekeeper i call him told me that he liked my former husband, but just that he didnt have the maturity to do it. boy was he right on. i thought there was something wrong with me, but it was really his lack of maturity.
Posted by just don (Member # 1129) on :
I do as well all 'alone' as I ever did married.
You dont NEED that spousal support,,,it works without it.
Mostly just have to be comfortable about being on your own.
And willing to pick up after yourself!! And nobody to complain if you dont!!
Posted by aliyalex (Member # 6976) on :
just. that is welland good, if you are well enough to do it. i am in a w/c and cant get in and out of bed alone.
once i am in bed, i am there with my dog till someone comes in the morning. i do have a phone. nice.
still it feels better than when he was here all angry and resentful. like i said. we grow. we mature.
Posted by Sick Tick (Member # 23003) on :
I perceived that my husband was not being supportive...he seemed angry with me. But one day, we had a very serious conversation; turns out, he had been reading, and understood that the illness could mean my becoming disabled, and he was scared! He just didn't know how to deal with it. And I know that not a day passed where I did not mention the disease, so it was constant in our lives. It isn't right or good, and he has a lot of guilt now about how he handled this. And men have a tendency to want to fix things, but there was nada he could do for me with this one. His frustration was with the medical community, and his feelings of helplessness, and I don't think many men are encouraged in life to express that, or even know where to begin to explain it to us.
Posted by aliyalex (Member # 6976) on :
ST: you gave him a wonderful opportunity to realize what he was feeling. had to be so liberating for him whether he realizes it or not. and good for you to not take his anger personally.
my feelings of guilt got in the way for me to be open to hearing his feelings. first i had to forgive myself for having so many needs and not taking care of everyone else around me.
i still struggle with taking care of my caregivers. some patterns are really hard to let go of.
Posted by Sick Tick (Member # 23003) on :
Hard to do....concerning ourselves with someone else's feelings when we are so ill ourselves.
I am so sorry to hear that so many are feeling hurt by their loved ones over this stupid disease!
Posted by MADDOG (Member # 18) on :
Other people just don't get it,just when you feel they do, they ask you to do something you can't.
You realize they cant understand lyme till they catch it.
No non Lymies can understand this horrible pain filled disease.
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