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ask: Living with and possibly leaving a sick spouse - a heartfelt story from a reader looking for advice

By Michelle King Robson Expert HERWriter

A couple of days ago, a woman wrote to me in the "ASK Michelle" section and told me her heartfelt, honest, and I think heart-wrenching story about her ill husband, who has multiple sclerosis, and the very real difficulties about living with someone who has changed in so many ways over the years. Many of the changes have affected his personality and made him very difficult to live with at times. I wrote her back and told her how I could totally see where she was coming from in terms of her emotions, and that I understood what she was saying. But I also wanted to post her story here (see below), so others could see it and reply to her and give her more suggestions, support and a sense of hope and that she is not alone. Please, if anyone has anything they'd like to tell her, I would really appreciate it--I'm sending her this link so she can watch for more replies. For example, do you know of another woman who has gone through this, and/or do you know of any resources for her? Thank you everyone!

"I am a 37year old female, well educated and completely healthy. I married my husband 8 years ago, knowing that he has multiple sclerosis. He was a vibrant, fun, clever and interesting person. Over the past 8 years, he has physically deteriorated (developed seizures, incontinence, difficulty walking distances, had a pulmonary embolism and now suffers from depression (but who wouldn't)). He no longer works, he stays home and does some household chores, is obsessed with our finances (we are doing ok), is mean and angry, hardly talks to me, hasn't held me or made love to me in years and honestly I don't even think that he likes me. I really think that I could deal with the physical limitations, it's the emotional stuff that is wearing me down. I've been seeing a counselor who asks me "How much more are you willing to take?" and I just don't know anymore. I'm so lonely and feel so trapped. He refuses to see a counselor or psychiatrist. I feel like an awful person for even thinking of leaving him, but I'm so unhappy that I don't know what else to do. I guess my question is "what kind of woman leaves a sick spouse?"

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EmpowHER Guest
Anonymous

I've been in a relationship with a guy for the past 6 years, it started when I was 15 and I am now 21. He is 24 and although we've always had a deep connection, he's never agreed to marry me. I never understood why and decided to break up with him a few days ago, however, it was just then that he told me he has been diagnosed with MS, and the reason he doesn't want us to be together is because he doesn't want me to have a life in which I will have to give up living fully to look after him and the family.
A week ago I was ready to leave him, but now I feel like I can't leave him. I always thought that I loved him more than he loved me, so that made it easier to leave. After finding out this news I'm now confused. Do I listen to him and let him go and hope he'll be ok? I'd feel like such a terrible person if I do that. I feel like I love him so much, is my love for him not strong enough to marry him? How bad could MS possibly be? I don't know what to do right now. :(

April 19, 2014 - 3:38am
EmpowHER Guest
Anonymous

This forum is so depressing! I think we all have to try and do what works for us individually. There is no right answer or one answer. I am a 55 year old fibromyalgia wife, mother and working person and my husband has had diabetes for 20 years. He is not functioning brain wise and has recently got us into an intensely bad financial state. We also have a 30 year old who has auto immune deficiency leaning towards lupus or fibromyalgia. The other daughter of 25, has MS symptoms. Needless to say what kind of a house we live in. It seems society has put us sick people in a box to care for each other. There are not many helps and I am too busy to care or indulge. I have recently been fired from my job, have a debt to the bank, and have trouble making my way let alone help my family. I feel like my Titanic is sinking! So I pray a lot, read these forums to know I am not alone in the world and once in a while I get a scrap of goodness thrown my way. I still want to wash down the cupboards of a friend who has left her sick husband and has life threatening cancer. It is a bit much but I try to take what life throws at me. I am learning to walk on water, listen to supreme music and knit my brains out for family, friends and charity. I like to hear good news that my nephew won bronze in a provincial championship with a squadron of Cadets in rifle accuracy. I still care for my mother who lives in a home. And provide tea and sympathy for my divorced brother. My brother in law has no kidneys, lost brain function and hasn't much time left. I think it will work out right in the end. I am ready to go and God has a big heart for losers like me. I can still drive, paint, play guitar, knit, create, interior decorate to some degree and keep my house really clean. Life is good! I make the best soup, loaves, teas, grow plants in my house, and have a green thumb. My yard is an eyesore but it makes me happy. Lotsa love to all those suffering people with untreatable diseases. You will be OK but like my mother in law says, "It's damn close"!

April 18, 2014 - 6:01pm
EmpowHER Guest
Anonymous

This forum is so depressing! I think we all have to try and do what works for us individually. There is no right answer or one answer. I am a 55 year old fibromyalgia wife, mother and working person and my husband has had diabetes for 20 years. He is not functioning brain wise and has recently got us into an intensely bad financial state. We also have a 30 year old who has auto immune deficiency leaning towards lupus or fibromyalgia. The other daughter of 25, has MS symptoms. Needless to say what kind of a house we live in. It seems society has put us sick people in a box to care for each other. There are not many helps and I am too busy to care or indulge. I have recently been fired from my job, have a debt to the bank, and have trouble making my way let alone help my family. I feel like my Titanic is sinking! So I pray a lot, read these forums to know I am not alone in the world and once in a while I get a scrap of goodness thrown my way. I still want to wash down the cupboards of a friend who has left her sick husband and has life threatening cancer. It is a bit much but I try to take what life throws at me. I am learning to walk on water, listen to supreme music and knit my brains out for family, friends and charity. I like to hear good news that my nephew won bronze in a provincial championship with a squadron of Cadets in rifle accuracy. I still care for my mother who lives in a home. And provide tea and sympathy for my divorced brother. My brother in law has no kidneys, lost brain function and hasn't much time left. I think it will work out right in the end. I am ready to go and God has a big heart for losers like me. I can still drive, paint, play guitar, knit, create, interior decorate to some degree and keep my house really clean. Life is good! I make the best soup, loaves, teas, grow plants in my house, and have a green thumb. My yard is an eyesore but it makes me happy. Lotsa love to all those suffering people with untreatable diseases. You will be OK but like my mother in law says, "It's damn close"!

April 18, 2014 - 6:01pm
EmpowHER Guest
Anonymous

I've been in a relationship with a guy for the past 6 years, it started when I was 15 and I am now 21. He is 24 and although we've always had a deep connection, he's never agreed to marry me. I never understood why and decided to break up with him a few days ago, however, it was just then that he told me he has been diagnosed with MS, and the reason he doesn't want us to be together is because he doesn't want me to have a life in which I will have to give up living fully to look after him and the family.
A week ago I was ready to leave him, but now I feel like I can't leave him. I always thought that I loved him more than he loved me, so that made it easier to leave. After finding out this news I'm now confused. Do I listen to him and let him go and hope he'll be ok? I'd feel like such a terrible person if I do that. I feel like I love him so much, is my love for him not strong enough to marry him? How bad could MS possibly be? I don't know what to do right now. :(

April 18, 2014 - 3:45pm
EmpowHER Guest
Anonymous

To the anonymous narscinist who wrote to the lady with fibro who,s husband left her when she got sick. May God have mercy on you when your day comes for health problems. We all have our day when our health stats failing, just some of us are unlucky and it comes earlier in life. To say a sick person destroys a spouses dreams and their life when they get sick so it,s o.k to leave them is about as sick as it gets.
One day I am sure you will suffer long and hard and all alone, as no one else would deserve it more.
Do all women a favor and stay single,don,t trap anyone!

March 26, 2014 - 6:46pm
EmpowHER Guest
Anonymous

I had a child by a man that I had dated for a few months, and when I we found out I was pregnant he insisted that he move in with me. The relationship has been rocky from the beginning--money issues, but the biggest problem was he neglected to tell me about his history of heart failure which he had been diagnosed with 10 years prior. He told me his daily medication was simply for high blood pressure. I found out about his true illness 2 years after he moved in with me AT the hospital after he took himself to the emergency room. Despite feeling deceived I stayed with him after he recovered for the sake of our child. Then 2 years later he ended up back in the hospital after NOT making any of the lifestyle changes that his doctor told him to. He ended having a heart pump put in and then a stroke. After struggling alone with a small child I finally called his seemingly unconcerned family and said I need help. The crazy, unemployed, alcoholic brother was the only one willing to come--and he has made the situation more stressful than it already with his drinking and paranoia. The rest of the family has been telling my child's father that he shouldn't trust me, etc...meanwhile he is on my health insurance, hasn't paid any household bills or childcare even before he got sick on top of the earlier deceptions about his health and finances, and the occasional physical abuse early in the relationship. Oh and while, he's not providing for his child, he has turned over all of his money to his alcoholic brother who has spent every penny.

March 24, 2014 - 9:46pm
Susan Cody HERWriter Guide (reply to Anonymous)

Hi Anon

Wow, I am sorry you are dealing with so much. It's much more serious when there is a child involved as I am sure you know. 

Do you have friends or family of your own who could help? Can you get away, do you think, at least to give yourself to space and time to think?

You should also enquire if there are any benefits you can get like food stamps or help with housing costs - this could help you become more independent. 

We hope to hear back from you, will you keep us posted?

Susan

March 25, 2014 - 10:53am
EmpowHER Guest
Anonymous

I was in counseling after 25 years of an unhappy marriage. My husband had been verbally and emotionally abusive since our engagement, but I had been too timid to break it off. Over the years, he insisted on making all the major decisions: where we would live, when we would have or not have children, where they would go to school, how we would manage our finances. He would not allow me to pursue my interests or have a job. His temper was frightful and sometimes I worried that the children would tell their teachers at school things he said to them, and we'd be in trouble. Once our teenage son asked if he could please be treated better at home. It made me cry, and he said, "Don't worry, Mom, it's not you." Finally, when my children were older, I started working and planned to leave him once our youngest graduated from high school. 5 months before her graduation, my husband was diagnosed with cancer. I stayed to take care of him, and really tried to make the marriage work. Now, 2 years later, he in in remission, and I can't seem to be happy here. I keep remembering the many grossly unfair situations he put me in during our marriage. We are more like roommates than spouses. We sleep in separate rooms and are not intimate. Yes he refuses to believe I was ever unhappy, and pretends that everything is normal between us. He is semi-retired and obsessed about our house, so I can never leave anything out of place or I won't be able to find it when I get home. I work 10 to 12 hours a day and keep myself as busy as possible as a way to try to avoid feeling my unhappiness. I try not to show how I feel for fear of making him ill again, but I grow more desperate every day to begin a life of my own.
Regarding the story at the beginning of this thread, I sympathize with you completely. I do not know the answer to your dilemma. Nor do I know the answer to my own. All I know is that I've never been allowed to be happy, and that doesn't seem right. Sacrifice is one thing, but eventually we must consider when we are damaging ourselves. Once we've done enough damage to ourselves, we can't be of much help to a sick spouse. How does one strike the balance and keep everyone healthy? I wish I knew.
Best wishes to you, and to everyone who struggles as I do.

February 7, 2014 - 6:13pm
Susan Cody HERWriter Guide (reply to Anonymous)

Hi Anon

I am so sorry about how you have been treated. It's too easy to say what I would do in your shoes but I am not in your shoes so I won't. 

Just bear in mind that you have a busy job and life and your children are grown. You only owe yourself a happy life now - you have fulfilled your obligations and will always be a mom to your children, regardless of your personal life. 

Best,

Susan

February 10, 2014 - 11:34am
EmpowHER Guest
Anonymous

Dear persons with sick spouses,
I can feel for all of you. My wife has been ill for more than 5 years. The diagnosis of Lupus was difficult to make, and took at least 2 years of doctor visits and tests. In part, because of her illness, I lost my job, and had to find another job in another city. I commute back to see her on the weekends. Fortunately, she is considerably better than when she was first ill. She seems comfortable in the family home, yet after some years of commuting, I know that the life that I now live is not an ideal one. Much physical intimacy has been lost. When we talk about our relationship, it is clear that she is filled with ill feelings toward me and others. This is in large part due to years of frustration and ill health. Also due to some age-old issues that are magnified by her illness. There are few answers, and little of a middle ground. As a spouse of a sick wife, you are either all in or all out. I'm still all in. Can I continue to commute for many more years? I've been unsuccessful in finding a job in our "home city". Things are better than they used to me, in large part because see is improved from years earlier.

January 23, 2014 - 10:25am
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