How do you make it when you don't get any support from your spouse. I try anything and everything my Dr. says plus suppluments alternatives etc. I am trying so hard. I can't get him to read anything about it. He says I don't know anything about it,{ I have Files and more files on info] So I read, try new things with the support of my wonderful llmd.
My husband says he is sick of my whining and complaining about something everyday always blaming it on lyme and nothing works. I have chronic 20yrs easy neuro lyme with other symptoms including suicidal thoughts, severe depression and anxiety,v he doesn't think is related.
Today he said his mother battled stomach cancer 6 mo. and never complained once. Boy that hurt. I told him on my sister, dad and my beloved dog's grave I will never say another word about it. He is not the type to give in or apologize.
Right now he his working out of state. I just don't know how to handle this. I am so sick of crying. Guess I'll go cry some more for noww. Thanks for listening. Sometimes I just want to stop everything and see what would happen.
Posted by julielynne4 (Member # 20336) on :
I am so sorry that you have to go through this. It is hard enough to deal with being so sick and learning about the disease and treatment, not having the support of a spouse makes it so hard.
Unfortunately I have heard of this way too many times, and it is always so upsetting to hear. There is so much debate over this illness, and since the truth is concealed by so many doctors, media, and others, that people in our personal lives often seem hesitant to accept that we truly suffer from chronic/neurological lyme.
I have learned also that just the mere idea that we are ill, or that we have these issues, can be too much to bear for our spouses. I don't mean to make generalizations, but sometimes, I find that men simply want everything to be okay, for us to be well, and if we are not, then they do not know how to handle it.
Maybe your husband deals with your illness by denying it, for whatever reason. I guess it doesn't really matter WHY, because it doesn't do anything except cause you pain.
You should be able to vent, cry, and share your pain with your spouse, in my opinion. I don't know anything about you or your marriage, but I do know that being in a situation that is "toxic" cannot be good for you and your healing.
Do you have friends or family who you can confide in, who try to understand what you are going through?
How long have you been in treatment?
I am thankful for this site for many reasons, but one biggie is that I know people are here who will understand when noone else does.
Take care and hope to hear back from you! JL
Posted by Keebler (Member # 12673) on :
- Right now he his working out of state ? Change the locks.
Seriously, (not that I'm not about the locks) . . . but, if someone does not want to learn more there is no way you can make them. To continue to pressure them will only fuel negativity and resentment.
Can you separate? No need to even discuss the relationship but say that your medical needs require some distance. He may be willing to help you out with that as you both may benefit from some space apart.
Can you see a LL Ph.D. counselor who can help with and expectation assessment and communication skills? For either just yourself or for both of you? Maybe you'd go first for a few sessions on your own.
Don't put him in charge of what you need to do for your health. That is your responsibility alone. Support is great but do not expect it.
Do the best you can to take care of your needs - regardless of what anyone else thinks (within reason, of course if you share a credit card, etc. as financial respect is important. )
If you don't care what the Easter Bunny thinks about how you proceed, just don't care what anyone else thinks, either. You wouldn't try to get the Easter Bunny to understand, so don't try with any person who has already closed off that carrot patch. the gate is up and it's solid as Fort Know. Let it go.
Seriously, I know this can be emotionally devastating but you are in a fire now and you just have to figure out how to get out on your own - you can't care what others think.
Just go back to that "Easter Bunny test" - it often comes in very handy. Be strong for yourself. You will see positive change come from that. Guaranteed.
All this, of course, still within the bounds of respect. I'm not saying not to care about others or treat them with respect - but just not to try to get them to understand if they don't want to. -
[ 04-10-2010, 02:26 PM: Message edited by: Keebler ]
Posted by kidsgotlyme (Member # 23691) on :
Has he seen the Under Our Skins DVD??? My daughter has lyme, and when my husband saw it, he changed his tune really fast. It opened his eyes to the seriousness of this disease.
Without that DVD, I think he would have just thought I was a quack and making stuff up. He REALLY didn't get it, and I knew he was thinking that I was over-reacting. I'm SO thankful for the person who let me borrow it.
Posted by LymeCFIDSMCS (Member # 13573) on :
There seems to be a whole camp of people (my family included, which is why I'm suffering a similar nightmare) who were raised to believe that disability is a type of complaining.
In my experience of banging my own head against this wall, I'd say that underlying attitude is very hard to undo.
The reality is, if people knew how LITTLE most of us "complained" given the magnitude of our symptoms, they'd laud us as heroic. Unfortunately, though, these illnesses don't have the cache of cancer.
The idea about "complaining" is just a form of prejudice, like people who believe people are poor or homeless because they don't have ambition and ignore all of the social realities of poverty. I don't think there's an easy way to undo those attitudes, in other words, as they come from deep conditioning and simple education doesn't really help.
So I vote for some kind of separation too, even if not a literal one, but I don't think you'll have peace until you surround yourself with as many wonderful, supportive people as possible who don't need to be convinced of the truths of your illness.
I'm sorry you're having to deal with this.
Posted by jasek (Member # 12395) on :
Wow, I so appreciate all the support. Julie, I have been in treatment for 11 yr. Keebler, the Easter Bunny analogy was perfect and I will use it. Kids, No he hasen't seen Under my Skin, neither have I. I don't have the money to buy it. LymeCFID, You hit the head on the nail He doesn't understand how little I complain. He grew up with a very stoic mother and he learned well. He never complains even when he ligetitmetly could, and never sees a Dr. That sort of explains thing. He is generally a good guy, it's just this issue, which happen to be so big, bigger than he ever thought.
He married me knowing I had it, and said he could handle it. If he only know how much I do hide from him. You are all right, I am in the fight of my life, I feel I do take charge of it, but I will look to get my support elsewhere.
I phoned my Dr. yesterday and his nurse spent so much time just listening to me. She said unfortunately this is common. So not only are we fighting for the world to understand us, some of us have to have that battle in our own homes where we should feel safe, loved and supported.
You have all helped and make me cry just rereading of your support, and if that's what I have to do I will read it every day for my strength. God Bless. Jasek
Posted by jasek (Member # 12395) on :
one more post re: this. I know now where to get strength when I need. He and I are so opposite when it comes to emotion. He is closed and I am an open book.
For everyone who has answered me I want you to know he is very good to me other than that. Since I've known him for 20 yrs. You would think I would get it by now.
He works out of state and takes what jobs he can so we can afford to keep me in Fl. through the entire winter season because my body can't handle anything below 50 degrees. Since we have a house up north he works for two morgages and all the other things that come with it.
In a little over a year he will be able to retire, then things won't be so hard on him. I am on disability. He just cannot grasp the hideiousness of this disease, but who can unless they have it. P.S. I went between 15-20 yrs. undiagnosed so I am chronic. Thank-you all again. Jasek
Posted by ladycakes (Member # 12619) on :
I honestly don't think my husband understood how sick I was, until I wasn't sick anymore.
Like... oh, THIS is what you're really like? As though I'd been laying on the couch around the clock because I wanted to.
This time around, he's been great. He's crazy supportive now. But the first time I was sick, we fought a lot. I can't offer much advice, since it took me getting well for him to really 'get it'. But if it makes you feel better to know you're not the only one, well... you're not.
Posted by kam (Member # 3410) on :
I have a friend who has known me before and during lyme...
...she doesn't get it. She watched UOS and said she was skeptical.
..I was so thankful for the Saturday night chats at the time.
..I would stay at her house when I went to see my LLMD and the Sat night lyme chats helped me as I needed to make that connection with others who understood.
...I don't understand this disease and we live with it.
I have noticed it has helped to learn what my limits are and to create an environment that helps me heal.
It shakes me up when I try to do something "normal" no matter how simple and it tasks the body and mind so much it is scary.
Sounds like the positive out weights the negative with your husband.
Hoping you can learn to manage your health and environment in a way that helps you heal.
I liked Keebler's comments. I think I will remember the Easter Bunny analogy for quite a while.
Especially when some of those eggs he leaves stinks.
Posted by catnippy (Member # 18641) on :
I went through the same thing for 5 years. He didnt believe I was sick and I couldnt even walk. I wasnt lucky enough to have a good doctor either.
I had doctors from the horror stories. 2 almost killed me, one did needless surgeries all before I FOUND MY OWN DIAGNOSIS!
I do want to warn you though of a few things, some already said. My husband, because of me being so sick and living in the boonies, bankrupted us. He has put us into debt to the point of unrecoverable and didnt tell me a thing.
We are loosing everything. I also lost the ability to get any medical help unless I come up with cash up front for the disease or even the symptoms. So obviously I can only afford a mall ammount of pain control.
He also has not made any money for almost a years and used our and my own credit cards and maxed them out and then not paid them. He took out loans in my name.
He was also so angry at me for being "sick" he got verbally abusive and so when I was able to finally escape I did.
Just please, as bad as you feel, keep an eye on everything that is going on. I was so sick I was just trying to fight the pain and trusted him to do the rest. DONT make my mistake.
We were married almost 25 years and I would have never guessed he would have done this to me. All you described he did to me too.
He even ignored me a few times in the middle of the night when I woke up in such pain and begged him to take me to the hospital. I was an hour's drive away and couldnt even walk. He said no and turned over and went to sleep.
I left 7 weeks ago and am hiding from creditors and trying my best to save up some money to get a lawyer.
I have not seen a penny from him and he has not done anything to protect my only asset left, my car. I dont expect it either.
He is in my home with my stuff and moved his nephew and their family into it. I am in a slum apartment across the country with no lawyer and no money.
Anyway all I am saying, as hard as it is, with the pain and the medical problems, don't forget to protect yourself in the other areas of your life.
The really funny thing is every place I call, legal aid and so on is so full of needy people I am not getting any help there either.
I guess I should take this opportunity to ask if there are any lawyers that can practice in SC that would help me and then have my husband pay them afterwords. Now that I am gone and he isn't paying bills I know he has the money. He has been out drinking and spending it on himself.
I ran out of meds and had withdrawals for 4 days before I could refill and he knew it. He was eating lobster for lunch last time I spoke to him.
He has a ability to make 60 k a year and there is no excuse. So PLEAE any lawyers PM me, I really need help.
Jasak, Don't let your life get to this point, just keep yourself in the loop at all times.
Posted by trishee (Member # 9699) on :
The thing is once you know what is wrong and how to go about helping yourself, the burden to prove to anyone that you are sick is gone. Don't allow him to take the energy from you that you need to get well. You know the facts, you know the seriousness of this illness. It's a privilege to be part of someone's life. If the isn't interested perhaps he doesn't deserve the privilege of being let in to your world. A world filled with hardship but a world that will make you a stronger person than you ever knew you could be. You are gettin yourself thru one day at a time. He is not getting you thru, you are! People who cause you stress must be left out of your life until you are better. Your sickness will get worse with stress and just maybe he doesnt' deserve to know the warrior you are. You have nothing to prove and I think you should focus on what your body wants/needs from you and not what your husband complains about. Your life is on the line focus on you and keep stressful people emotionally away..
Posted by METALLlC BLUE (Member # 6628) on :
You have my sympathy. I went through the same thing. I ended the relationship. Reality takes precedent over someone else's opinion. Either they support me, or they won't. Supporting me means knowing the disease well enough to be an advocate and helping me along the way thru the process.
A partner is supposed to have your back, otherwise, what is the point of having a partner? I answered that question. My answer was -- then they aren't my partner. A partner has your back!
Another issue I have is those who didn't support me when I'm sick suddenly treat me well when I'm not sick. **** that, I'm not continuing relationships when I get well with people who didn't support me when I needed friendship.
Posted by LoneDove (Member # 16516) on :
Jasek I'm sorry about your situation but thank you for posting this. You are brave to do so.
I had a big wakeup call tonight that I wish hadn't. Then the only place I could go was here and I was ashamed to post about my husband not supporting me.
My big wakeup call? I told him I ordered "Under My Skin" so he could understand something about lyme. Last night he was away playing music. Tonight he came home and tried to argue. Finally we watched it, not saying anything. After the movie was over, all he said was, "Are you disappointed in the movie because it didn't talk about plum isle?"
Then he went to bed.
That movie was very scary. I didn't know the extent lyme could debilitate. Then to get no emotional support at all from my spouse is devastating. It's all about him all the time. I think to get well, we have to be "selfish" and set boundaries and be firm on what we need.
I asked for a divorce tonight. He said he didn't want one but I'm leaving for awhile so he can think things over. He said he wanted to support me but his body language said no. He said that I needed to change to get his support...I think I just need to get away. My heart hurts.
Posted by jasek (Member # 12395) on :
Lone Dove.. You are right to go away for awhile to clear your head...and now you know how brave YOU are by posting your feelings. This place is a sanctuary because we are all kinda family. Stay strong. Keep in touch. You can p.m. me if you want. Jasek
Posted by METALLlC BLUE (Member # 6628) on :
LoneDove, you did the right thing. I'm real sorry you are going through this.
Posted by JR (Member # 16898) on :
If one is to heal, sometimes they have to remove themselves from a situation that is stressful-as in going on a retreat or going to stay with a sympathetic friend for a while. Many spouses don't get it. And continually experiencing the friction of living with someone who doesn't get it makes things worse. Perhaps a separation for a while. I was continually angry with my spouse for not getting it-so I separated- and now we have a good relationship!
Posted by IMHisda (Member # 6998) on :
some people are just pompous A holes until they realize they are wrong.
In the meantime find your support somewhere.
Don't through the pearls of your pain and suffering to a swine who doesn't care. He may really be a great person but when it comes to Lyme -he just doesn't get it yet so he's in the Swine (ignorant) category in my book.
Posted by IMHisda (Member # 6998) on :
Jasek:
What a sicko you had!!! Shake the dust off your feet and find someone who cares. Abuse sucks. No one needs that.
Posted by LoneDove (Member # 16516) on :
I emailed him this part of Metallic Blue's post to him: "A partner is supposed to have your back, otherwise, what is the point of having a partner? I answered that question. My answer was -- then they aren't my partner. A partner has your back!
Another issue I have is those who didn't support me when I'm sick suddenly treat me well when I'm not sick. **** that, I'm not continuing relationships when I get well with people who didn't support me when I needed friendship."
I asked him to make a choice. He chose to support. So today he's been nice.
I think it's scary and a lot of people just can't deal with it so they deal with it with anger and being a jerk. It's a negative energy. Last night we were arguing and 2 dogs tried to fight each other that have never fought ever together. They just felt the negativity and was going to solve it with fighting. They didn't know why. It's a protective thing.
Posted by kissygoose (Member # 21314) on :
My heart goes out to everyone who has to deal with this.
I'm really just beginning my journey, at least that's the way I look at it. Because I've had so many health issues over the last few years my spouse just sees this as yet another problem that's going to drain money and time from our family. But I don't think he has any inkling as to the extent which this could take.
He thinks I'm crazy for getting on here too.
I'm praying that he is supportive when things get down and dirty.
Catnippy...could you try Catholic charities I think sometimes they have legal aid.
Posted by Gahagan (Member # 21194) on :
quote:Originally posted by LymeCFIDSMCS: The reality is, if people knew how LITTLE most of us "complained" given the magnitude of our symptoms, they'd laud us as heroic.
Well said, indeed! Posted by JR (Member # 16898) on :
I wonder if there is support FOR the spouse?
I think Lyme Disease is a family disease.
Posted by LoneDove (Member # 16516) on :
Yes, my biggest fear is if my spouse gets it and the neuro / mind fog manifests. Then both of us walking around the house looking for lost items....that just kind of happened. Maybe just a coincidence but he has very little patience so it'll be interesting.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by LoneDove: I emailed him this part of Metallic Blue's post to him: "A partner is supposed to have your back, otherwise, what is the point of having a partner? I answered that question. My answer was -- then they aren't my partner. A partner has your back!
Another issue I have is those who didn't support me when I'm sick suddenly treat me well when I'm not sick. **** that, I'm not continuing relationships when I get well with people who didn't support me when I needed friendship."
I asked him to make a choice. He chose to support. So today he's been nice.
I think it's scary and a lot of people just can't deal with it so they deal with it with anger and being a jerk. It's a negative energy. Last night we were arguing and 2 dogs tried to fight each other that have never fought ever together. They just felt the negativity and was going to solve it with fighting. They didn't know why. It's a protective thing.
Smart move. I think this is the first time someone actually took my statements literally and acted on them. That takes courage. Easy advice to give, but hardly easy to act on. I acted on it and told my brother and family how I felt. It took a long time. I knew inside it was the right thing to do but I was very afraid.
Some chose to support me, some said they would and didn't. Those who didn't were cut out. It's painful but like removing a tumor that's inevitably going to spread and kill you, you've got to sometimes "cut it out."
At any rate, I still suffer and have pain when I'm given the guilt trip by some people who "do" usually understand. Occasionally they forget to be sensitive to the situation and slip up. I can forgive that though.
When I made my statements, I actually meant them literally too -- as in evolutionarily. Why do we connect in monogamous relationships and bond the way we do? So we can come together, protect each other, protect our children, and ensure the benefits of our collective collaboration results in making the whole stronger than the individual. We "are" strong when we're alone, but we're much stronger when we've got the strength of people literally picking us up when we can't shower, or brush our own teeth. We're stronger as a nation when we take care of our sick as well as our wealthy. The point of the unions we have in life via our relationships is to ensure we survive.
You "CAN" not survive with a spouse who is beating you emotionally, physically, or psychologically draining you with euphemisms and denial about the severity of your situation. Either they get it and help (most of the time), or they can **** off and find someone else who will put up with their failure and inadequate character flaws, especially those of breaking vows and being dick heads.
Posted by jasek (Member # 12395) on :
I am amazed at the number of responses this link has generated. It"s sorta like coming out of the closet and you can stop pretending that we have total support like we believe our other lyme friends have. Maybe we are all pretending. Purging your feelings when you feel so down is so cathartic, and it brings us the people we need to say the things we need to hear like from Metallic...so purge on my lyme friends I'm still feeling better with each story I read. Jasek
Posted by kam (Member # 3410) on :
Caught the part about legal aid. Assume it is for divorce papers.
What worked for me was going to a paralegal and making payments.
She was better known in the family law courts as her paper work went through.
Attorney offices kept getting it wrong and had to re do things.
Couldn't afford an attorney at the time and didn't have what it took to do the paper work myself although I did pick up a Do your own divorce book.
Posted by ping (Member # 6974) on :
jasek, there were so many good one-liners and advice in these posts, I couldn't begin copying them all. Keebler, LymeCFIDS..., MB, LoneDove and a host of others. (Can't remember all the names, okay?)
Keebler said change the locks. Yes, ma'am, please do it. LymeCFIDS... said that to some, "disability" is just a type of "complaining", etc. How true! MB says no going back to old friends that didn't support through illness. Kudos, MB!
I stand by all of what's been said and did it myself and am damned glad I did. I wouldn't have lived through all this with my sorry a**ed family and those I used to call friends.
Here's my 2 cents worth (for free too) - Everyone is going to get their turn. I promise you; I've said it over and over again. No one gets out of life alive and the majority of people on this planet don't die quickly in their sleep, or suddenly, without violence (accident, assault, etc.). Oh no, it's usually a long, painful decline. Although one might not wish such a thing on another, it's a fact of life... Keep this in mind and it will help you to keep your mouth shut when you know the reception of your info will be negative. It will take a lot of stress off of you.
Remember, everyone is going to get their turn.
Hang in there, jasek. Start planning an escape route now. You need to get. (In Texas, it's "git".)
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