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LindaJoy

Bad Relationships And Stuck Due To Illness. How To Cope?

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Hi, everyone.

Maybe this should go under the chit chat forum, but I think, since I'm talking about loneliness due to having illness--Dysautonomia--I'll try it here. If wrongly placed, please move. Thanks.

I know we've talked here before about being in a bad relationship and having to stay due to being too ill to live on one's own, or needing our spouses' insurance, etc. What I'm wondering about here is not who stays and doesn't want to, or why, but how do you cope when you have to stay in a poor relationship due to illness? How do you tolerate someone who basically treats you like you don't matter, like you aren't even there most of the time--especially, what do you do when that person is the main person you see every day?

I'm sick every day, but I'm still a person who needs to connect with others. I'm still a person who wants to be with someone who wants to be with me. I still want to feel like I'm alive with someone.

I guess I can't really blame my illnesses on my poor relationship. My husband and I had been married for 3 years before I was diagnosed with Dysautonomia, and he treated me poorly even then, but as I've become more and more ill, am hospitalized more and more, I've become less and less of a person to him. I'm very lonely, yet stuck. What do you all do who are in the same situation? I have friends I talk with, and family, but I want that special connection with someone. It's been ten years of loneliness and I just don't see anything changing with my husband. I'm ill, but my mind still works. I'm still a person. I still want to feel loved, feel like I'm special, important.

How do you all handle this?

I've joined Facebook to be able to talk with my friends and family more. I'm trying to get out to talk with my close neighbors more. I'm calling my children and family members more. I still can't get out to see them, but I'm doing more on the phone and computer to connect with them. Yet, it's still so lonely in this house with a man who doesn't care that I'm so lonely and miserable. He doesn't even try anymore. How do you all handle this, who are in this same situation?

I'm sorry to talk about something so private. It's just, I know you all are so good to talk with here. I really could use some suggestions.

Thanks.

Lindajoy

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Just wanted to thank those of you who have written me off forum to share your experiences and offer suggestions. I appreciate your trust in me to share such personal issues, and I appreciate your taking the time to care and make suggestions to help me.

I hope I can return the favor some day! :)

Lindajoy

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Linda Joy- I'm not sure if Joy is in your first name or middle name- but it's my middle name:) Something in common!

My hubby and I have been married 6 years- and we have 6 kids. Before I go on- I will say 2nd Marriage!!! Blended family! My first husband was abusive, time, emotionally, verbally and physically. In front of my children. I grew up in a home with 1 younger brother that I raised even though there were only 3 years between us. My parents were addicts, Drug. addicts, ALL kinds every kind and alcoholics. They were extremely busive to each other. My mom would start a lot of arguments- but my dad started double at least and violently ended them. It was a scary household, when I turned 18, got an apartment, took my brother (not quite 15) and moved without objection. We were in the same town. Well, of course I married someone with addiction issues- this time compulsive gambler. He treated me the same. Violent beatings, yelling, screaming, except he stole every dime while I worked 3 jobs and 4 raised kids- and lived every night on 2-3 hours sleep. I have autoimmune mediated autonomic neuropathy, Autoimune disease- undefined but aggressive, EDS- at Mayo they said all were lifelong diseases and something triggered it this time horribly.

Fast forward to now- about 6 months ago Rob (hubby) started fighting, here and there. Now, a day doesn't go by when it's not WW3. I understand his situation *****, but I can't believe how SELFISH he is. I try to explain how I feel, within seconds it's flipped around to his feelings. I told him the other day that the "Poor Rob Syndrome" is miserable. How awful be must feel. He was the most loving husband

Wonderful, I can't think of enough good words. He took over raising AND supporting my 4 kids (ages 10, 8, 5, 3) when I moved here and loved them as his 2. Until one night a couple months ago - he said things to me that I will never get over. He is my caretaker because he'd lost his job because I was hospitalized so long and because of my frequent syncope and many concussions I am supposed to have someone with me ALL the time. He hasn't touched me in MONTHS. He's told me I repulse him. It is like I'm married to a different man. He used to be so affectionate- now I make him sick. I don't get it. In sickness and health, right?

I want my husband back because this man is starting to remind me of my first and I promised myself for my kids' and myself I'd never go back.

LindaJoy, I'm sorry Ii cant I sorry I can't advise, but I have so much empathy. Personal message me or email me at teamslynn@gmail.com..... Sadly enough, I'm a Family Counselor. Maybe I can help you.

Lots of hugs,

Jen

I hope you do email. I think I can help with more Info.....

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if i had a nickle for every time i said the word "stuck." i can really relate to how you feel. i relate my life to a square peg/round hole, where things just aren't aligned. in fact, before i got sick, things were VERY misaligned, and i blame my illness on the stress i was under and the fact that i was having repeated "stuck" type of problems. this may be a controversial statement, but for me, i absolutely know that personal stress led to my illness.

i have my own relationship problems. one of those everything looks perfect from the outside, but what goes on behind closed doors is a lot of nothing. lack of empathy, lack of intimacy, lack of trust, lack of honesty, etc. you asked how do you cope? after many, many failed attempts at marriage counseling and personal counseling, i've just kind of given up. i know that's maybe not the answer to hear ... but in my case, a lot of my stress came from TRYING and TRYING and TRYING to make things work. now that i've given up, i save some precious energy. it's not a great solution, but it has to do for me, for now. this results in me feeling empty and lonely. it makes it worse when friendships suffer as well. i am reminded of the recent "friendships being affected" thread. it's enough to lack at home, another to lack socially and another to lack financially and with employment (see my thread on my work issues).

we go through a lot - more than what i think the people in our lives could handle! i get tired of always being strong and not being able to lean on anyone. this forum is awesome for that, though. and in my case, my child brings me great joy, so i just wait for him to walk into the room to feel better. :)

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Anoj and LindaJoy,

This was a side effect I wasn't expecting. I do look pretty hideous. I've lost over 50% of my hair, I have no energy to look like I used to. Certainly not sexy.butbthis is so shallow and unexpected.

I've started doing what Anoj has done. For now, I've given up. But I'm so lonely. It's hard enough to feel like this every day but some compassion? Too much to ask? Maybe we should form a support group off this forum for this topic. This really affects your healing.

Jen

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I'm reading a book now on how to cope with illness. The book says to be positive and try to get people to visit you and tell you about events u are used to doing before being ill, that it will motivate you to be a part of your community in a way. I have to read more about it, but be positive and maybe order a book online that your husband can read to motivate him in a positive direction.

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Hi, everyone, again. Thank you all so much for your continued emails and postings here.

Jen, I sent you an email just to make sure I had the address right. I hope we can continue to talk. Thank you for sharing your story. I am so sorry you're having to go through all that again. My first husband was extremely abusive. Think "Burning Bed." When I divorced him, after two restraining orders and lots of therapy (six years worth), I was finally at a place where I felt healthy enough to be in a relationship again. I, like you, married for the second time, thinking this person would be different. He seemed so gentle, so nice, so caring. I had no idea.

Anoj, Yes, after I gave up trying, I felt a weight lift off of my shoulders. But, then, the intense loneliness settled in because it was like, "Okay, fine, but now what?" And, I can also relate to your saying that you think the stress from your already not so good relationship added to your illness, or maybe even caused it. I was healthy before I married my husband. I could feel myself getting sicker and sicker as the fights continued. I don't think the stress from a bad marriage caused my illness, but I think it's one of those cases of, I had the illness in there, and stress triggered it, like having the gene for lupus and a stressful event causing the illness to come out. I had a doctor once tell me that my emotional health and physical health were absolutely dependent upon one another. Most people's are, but with me, if I'm unhappy, I'm physically unhealthy.

RichGotsPots, I think I try more these days to talk about "normal" things, things I used to be able to eat, things I used to do, but not in that way, of course, just matter of factly, when I talk with people, so I don't talk illness all the time. I've seen a change in my family and friends through this, but not my husband. I think too much negative has happened. Honestly, I think our bad relationship has caused him to become sicker than he normally would have, as well.

Oh, and Jen, I can relate to the "looks" changing, too. When I first got sick, I had red hair down to the middle of my back, I worked out, so I was in pretty good shape, I looked really nice. Well, I was 40 and people thought I was 20. They thought I was my husband's daughter. Now, It's just 7 years later, and people think I'm my husband's mother. They think I'm in my 60's. I have very short gray hair, my face is all bloated and broken out due to steroids, I weigh a lot more than I ever did, I can't wear any makeup. I am not attractive at all. My husband agrees that I'm fat. He doesn't tell me I'm ugly on the outside (Just on the inside), but he shows me by staring at every other woman out there. I feel like a blah, both physically and emotionally. I agree that this is not helpful to getting well.

I'm so sorry all of you feel this way, too. It hurts so much. I don't wish this feeling on anyone. But, I'm grateful that you're here, sharing. I'm so glad for this forum. I don't feel so lonely with all of you here.

Lindajoy (Joy, by the way, is my middle name, but my mom calls me Lindajoy, so I use it)

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This is one of the hardest things in having an illness that leaves you so weak and ill that 'looking good' is almost impossible. I actually 'tested' my husband on the way he treats me based on how I am looking and acting. What I did for a few days in a row, was use ALL my energy to make myself look nice. I looked like I was ready for a job interview (seriously). Then when I talked to him, I didn't talk about how icky I was feeling, but asking him how he was doing, etc. I gave him a massage (which left me even more weak than what I was) and tried to act like I was completely healthy. It was amazing how much it helped in how he seemed to treat me. I wasn't able to do it for more than a few days, but it helped me to realize that I have to give it everything I have to help my husband feel like he has a beautiful wife, even though it is unbelievable difficult to say the least. Not sure if this is really what anyone wants to hear, but for whatever reason, guys just seem to be a bit shallow in this sense and enjoy having healthy & happy women in their lives.

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I had a husband who needed a "happy and healthy" wife. Operative word being HAD. I got sick 5 weeks after we got married, and our divorce was final 15 months after that. He abandoned me in every sense of the word, told me frequently that the weight I had mysteriously gained (turned out I had celiac disease, it came off, fast, two years later, and then some before I finally got correctly diagnosed, went gluten free, & am finally relatively stable) even though I was only a size 6. He would completely abandon me every time I had to be hospitalized, telling me that all his friends "at the bar" knew how sad he was that I was sick. My healthy-ish years ended sooner than I think they had to, because I destroyed myself trying to please someone who couldn't be pleased. And eventually, he gave up and walked away for good. Fortunately, by then I had a job with excellent benefits, so even though I was dirt poor, literally sleeping on an air mattress for the first 4 months I lived there until I could afford a bed, I was at least getting the medical care I needed. There is no doubt that stress contributed to my illness. Dr. Grubb has told me, many times, that managing my stress is the single most important thing I can do to manage my illness. And as I collect more and more diagnoses, that only becomes more important.

I know that not everyone has the ability, or the lack of any choice in the matter, to leave. But I slept better by myself on the floor off that tiny, cheap apartment than I had in months. I turned to my friends and my church for support, mainly emotional because I have too much pride for my own good, but financial at times. I made th investment in my own future, and my own happiness, and spent two years in some pretty intensive therapy. And I learned why I kept making the same mistakes over and over again, and why I sabotaged relationships with decent guys. With a lot of help and support, I finally agreed to go out with a really, really nice guy. Who already knew I was ill, and wasn't scared off. And even in some of my worst moments, including breaking up with him when I found out about my EDS, and that I would only continue to degenerate. (In fairness, I really did feel that such a good guy deserved a girl who wasn't going to be so physically handicapped, in addition to all my emotional baggage.) In a little over 4 months, we are getting married. We have had tough moments, to be sure. And the days I do feel well enough to take extra effort with my appearance, he definitely appreciates it. But any man who can only be kind to you when you are all dolled up, even at the expense of your health and well being, does not really love you for you. The fact that my guy wants to cuddle with me, kiss me (among other things!) spend time with me even when I am too sick to get out of bed means more to me than I can even describe.

Leaving and starting over, especilly in the middle of illness, feels impossible. And your individual circumstance may be one where it is impossible. But all the time I stayed with my ex in "comfort" cost me, and cost me far more than worrying about how I was going to pay my rent on a bad month. Not having to endlessly push myself beyond my endurance, (which was a constant with my ex) has made me feel much better emotionally, even if I don't always feel better physically. So if there is any way you can feel even slightly better, including not getting dolled up, and your partner doesn't support you, then they don't care as much as they should.

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All this conversation is wonderful. I'm sorry we are facing it, but it is nice to talk!!! Thanks Rich! I may read the book but my husband WILL NOT. Everything wrong in our marriage is MY fault! I'm controlling, demanding, rude.. You name it.

Tammy, I almost giggled when I read your post ( but I know you are hurting and could never laugh at your pain) because I tried the SAME thing 3 days ago, my husband left early and would be gone 4 hours. Well, I can't walk, stand, do anything at all when I'm not lying down - so 4 hours isn't much time to make myself presentable. But I did. I was exhausted and it took over 3 hours. I usually wear yoga pants and a cute T shirt but I wore his favorite Victoria Beckham brand jeans, his favorite top ( neither fit me before- they slid right on). Put on a "real" bra instead of my Genie one. Did my hair (what's left of it) full make up. You name it. I took a picture to send to my BFF just to be sure and she said- "Well- you don't look like you used to- but you look really good and better than you have in forever.." (Gee thanks- lol... But we are always honest and it's true. I can only hide so much. But it was a marked difference). I can't get up but when he came home it was night and day. Nice, friendly, grabbing me. I've got to tell you - I wsh I was as positive Tammy as you. I was so insulted and offended! I was so exhausted that it took the rest of the day to recover. My Bp was so low/ HR so high. I guess "Sickness and Health" means "Sickness, Health, and looking your absolute best!" he actually said "Who replaced my wife with this beautiful creature."

It's really sad. I feel like I've lost so much. I can't really parent anymore after 7 months in bed. I feel like a statue people come to look at. And when he reacted that way when I got myself looking decent- it sickend me. I was SO sure this time. How could he be so shallow?

Jen

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Jen, I am in tears over your experience. I am so sorry. I have to agree with you. My husband acted this way once, when I was first getting sick. I took two hours to get ready one time to go out to a restaurant. He couldn't stop following me around the house, like a dog in heat. It made me sick. I thought, "You're supposed to love me and want to be with me, regardless of how I look, not just when I look like a model." If this is the only time a man wants to be with his wife, when she's looking like a super model, I'm sorry, I think that's pretty shallow, and selfish, and mean, especially when that woman is sick.

I have an ex brother in law whose young wife has Parkinson's. She got it in her late 30's. She is now in a wheelchair and can't feed herself most of the time. She's very bloated from meds. Her husband is middle-aged, has a doctorate and is good looking and successful. He also wheels her where she needs to go, feeds her (even in public), talks with her, holds her hand, etc. He's the husband I would like to have. He's the type of husband we all deserve.

Sandyshell, I hear what you're saying. I went to a lawyer two years ago, to see if I could leave my husband and still survive financially. She said no, that I would be totall destitute within two years, so I'm better off just sucking it up. So, that's what I've done, and it ain't been fun, let me tell you. I have so much respect for you, for not allowing someone to treat you like crap and for moving on. I want so much to be you!! :)

I have respect for all of you who stay, too. It's hard. The whole thing is hard. It shouldn't be this way, but it is.

Lindajoy

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This may sound silly and ridiculous- as I just finish telling you the story of my messy marriage. It wasn't always this way and it won't always be. I find his behavior selfish, unacceptable and will not tolerate it. So he's a pretty quiet caregiver!!! The ONLY solace is that I KNOW be knows I'm right.

I'm only one half semester away from finishing my Masters in Marriage/Family counseling. I have decided if my brain holds up because it's iffy now..... I am going to take some extra classes because I'm fascinated now about what the spouse and patient deal with. It's a new passion. Sadly, I read last night 75% people in marriages with chronic issues divorce. Not sure how reliable that study is- if all was created, but I know it causes more problems than I ever imagined, so, please - email me- if you have a question, some advice, criticism for ME. (I can take it lol) or just need to vent, PLEASE don't hesitate. I'd love to practice Abd she if this is a good fit for me, I REALKplY need to feel useful as well. Type A personality and bedridden for a year most likely- and likely to never drive again.

I've had the help of so many through my ordeal- id love to give back something, no matter how small.. Not that I consider marriage, partnerships of any kind: gay, straight, circus, gypsies, you name it- SMALL at all. It is the cornerstone of our society. It is changing- good or bad, it still is changing but love isn't.

You can email me directly at: teamslynn@gmail.com and I will get back to you. If any of you have a tricky question I'm not sure of- I will definitely ask for help from professors and CC you.

Thank you!!!!

Jen

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Sorry I missed this post :( ...I'm not as sick as some of you, and yes, there are days, like today, that I am still in my PJ's (Chest pain)...my husband works at home for the most part, and has for the past 5 years, (he was out of work for about a year and then worked part time for 3...now we are full time, just in the nick of time), and actually, as hard as that was for me to get used to at first, I truly appreciate it now!!

There is no perfect relationship, but everyone deserves love and respect in a marriage/partnership. It is true that most men are very visual, but everyone gets old, whether they are sick or not, and if beauty is all you've got in your relationship, than it is pretty superficial to begin with...All relationships have there good and bad times; certainly no one should stay in an abusive relationship, emotional or physical, but true love (it's an act of the will) takes work from both sides. I married my husband because he was different than all the other guys I was attracted to...I started to look at the heart and intellect, but even someone with a good heart has their weaknesses. I wanted someone strong, intelligent, wise and loving, and someone who would be a good father and provider for the family. I was always attracted the wrong kind, although I thought I was average, but cared about others, and their feelings, which I thought to be an asset, and at times that can be taken advantage of...My husband just loved me for who I was, and didn't expect much in return. I believe 50% of marriages end up in divorce, because most expect to be given more than they receive, and I tried to be more giving, but when you are sick, you have to be given more than you receive, and that is hard on the partner that has to be the giver, whether it is in their nature or not to do that. That always was second nature to me, being a nurse, so it gave me pleasure to help others, but now that the table has turned, it's made quite a difference. It is very humbling, when you can't do all the things that give you enjoyment, even when it includes others, even people you don't even know. But don't you think that what we are doing here is really a part of that, even though we don't really know one another, but we are being a support and encouragement to others anyway, and that is very important and fulfilling, especially since we understand without judgement in all that we endure....

When I was first sick, I know that no one believed me, not even my doctors, and as a nurse that was very frustrating :wacko: When I finally received a diagnosis, actually 3 and maybe more to come, it was actually a relief and affirmation!! I personally, and professionally needed this. It took 13 years of not knowing. It has taken my husband a long time to understand what this is really like for me, and it hasn't been easy, but I believe he is coming around. I've had a diagnosis almost 10 months now, and even with all the test results, no one ever wants to believe you are sick, but I've known it for a lot longer than everyone else, so I have to be patient to allow others to get used to the idea. NO, it's really not what I would like, but it's not about me at all. I'm grateful that my children are now grown, although I was pretty sick at times before my diagnosis, when they were still at home, but kept pushing forward...I do not faint, but because of that, they expected more. Don't get me wrong, I would never want to be in bed all the time either, but I am home most of the time...

Life is full of joy, sorrow, pain, endurance and change, and we all have a choice, we can either roll with it, fight against it, or fight for the cause....I'm trying to roll with it, and fight for the cause to raise awareness and find a cure. I know that most of you are, too. We all have our good days and bad days, emotionally, spiritually and physically and we are all here to support one another, so that being said, I love you all. I'm not getting mushy, it's just the truth...and the truth shall set you free!

Edited by corina

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The thing is, it really doesn't matter what I look like now, I don't think, because my marriage was pretty sour right from the get go, and I looked 20 years old, had beautiful long red hair, was in shape, etc., then. I'm not bragging, it's just that I was not an ugly step sister. Even then, my husband was not nice to me. So, I don't think looks have anything to do with the quality of my relationship. Yes, looking good could bring out his lust, but that's all it would be, temporary lust, and I want more than that. Heck, he lusts after women all the time. Marriage has to be more than that, like Kim said: if it's based on nothing but physical attraction, and we all know looks fade, no matter what, the marriage isn't going to last, or if it does, it's not going to be very satisfying.

Thank you all for sharing your experiences. I'm seeing that most of you accept your situation and just make do the best you can. Others reach out to family and friends. Others try to see the best in situations. Some try to be healthier. You try all kinds of things. One of you left. I guess, all in all, it all comes down to what is best for ourselves, and only we, ourselves, will know what that is.

I have this dream that I suddenly get healthier, and I move away to somewhere very warm all year around (Northwest Ohio is cold from October through April), by myself, and start over. I get a part time job writing for a local paper, and spend my mornings on my little balcony outside of my third story apartment, reading the paper and saying hello to my neighbors. Yes, I have a vivid imagination, hence, I'm a writer by trade. But, most importantly in my dream, I am happy. I wake up every day feeling good that I am alive and excited about what the day will bring. I am not lonely. Life is good.

I, like so many here, am glad you all are here. I'm sorry we all share such a terrible condition, but I thank the site owners that they provide us a place to come together to talk. I would be so much lonelier without all of you. Yes, Kim, I love you all, too.

I don't know what I'm going to do. My husband and I have been talking. Well, I've been doing all the talking, he's been doing all the defending. I feel stronger all the time. Maybe it's the Clonidine, maybe it's the knowing I'm not alone with all of you here. I know I can't do anything right now with my husband ill himself. No matter how he's been, I can't leave him alone right now. I'm just not made that way.

Anyway, thank you all again. I agree that personal relationships are so hard when you're chronically ill, and a separate area to discuss relationships for us would be nice to have.

Take care, everyone.

Hugs,

Lindajoy

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I would say that we truly have love only when it is unconditional and we only know it true if we find ourselves in these situations. On the flip side not everyone responds to bad situations in the same way. It almost like the grieving process where daniel is a big stage to get over for some people.

I think we need to be as patient as can be but try to be vocal about the support we need.... Try to talk about things calmly and ur in the open, sharing idea and hear each others thought and needs. It takes times and we can always expect quick miracles, if it's true they will come around.

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I too went through a marriage with this illness. I went through a divorce but, now I have met someone and am engaged to be married. I also felt my x-husband was not very supportive. After taking the time to go through some counseling, I realized (in my case) I was actually not being very fair to the X with my constant demands and was probably just too wrapped up in me and my illness and just basically looked for any excuse not to appreaciate anything he did or tried to do for me. I guess I became my own worse enemy. I expected the X to give me constant attention 24/7, ignoring the fact the he might need some time to something for himself or something he enjoyed rather than to cater to me 24/7. If he left the hospital to get some dinner or take care of a chore, that made me angry. In my mind his needs didn't matter, only mine. I would accuse him of abandoning me. I enjoyed complaining to everyone that would listen "he just doesn't care". This guy went to every doctor's appt. with me, sat in hospitals with me, ran me all over the place. Still, I resented any time he took to have a meal or just take a break and spend a little "normal" time with friends.

I learned all this through counseling. I will not let this happen with my new relationship. I have learned that I will have to give my future husband credit for what he does, some time for himself, some time to do some normal/fun things with his friends so he gets a break.

Tammy--I think you are on to something and are on the right path. I wish I would have thought of that the first time around.

Sandyshell--You still seem to harbor a lot of hostility towards your X. I sounded a lot like you before I went to counseling. Please don't take this wrong, but maybe before you get married again you should consider some counseling to better understand and cope with what you expect from your future husband so you don't find yourself feeling the same way and having it cause problems in your new life.

This is a difficult illness to deal with but with understanding it can be dealt with and we all can get through it, enjoy life and have good positive relationships with some effort on our parts.

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