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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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I can so relate to your post. My husband has a Traumatic Brain Injury that keeps getting worse. He's finally found great doctors but we haven't had sex in months, and his TBI has caused other health issues. He's gained over two hundred pounds since 2008 and frankly, even on the rare occasions we're intimate, it's not satisfying. We're physically incompatible. He went through the anger and it's better, but I feel like I have to hide from him a lot when it flares up. I drank a lot for a couple years, trying to cope with my feelings, and at the end, I attempted suicide. I've gone through extensive therapy, stopped running away from my life, and things are better. Except for our sex life. I try to suppress my needs and don't pressure him anymore, but sometimes it just blows up and I let all the pent up feelings of rejection out and attack him with how miserable I am. Not productive or helpful, but we're all imperfect. Therapy helps a lot. I know how hard it is. Suicidal thoughts still come from time to time. Please don't give up your life, though. I am an artist, and did no art for !any years, dealing with him. I leaned that it made things worse. Even if you have to hire a caretaker for a nour a week, find something ALL your own to do that makes you feel normal. I'm back to doing art almost every day and it has completely completely changed things. Heck, even he is happier seeing me happy. Even if illness changes them, there's hopefully a spark of who you married in there. Beat wishes.
July 20, 2015 - 8:08amThis Comment
Thanks for your validation. It makes such a difference knowing I'm not alone. I haven't logged on and seen all these responses until now, and I'm surprised by some. And a little sad.
February 10, 2016 - 10:55amI know I am not the one who is sick. However, I may as well be. I will never understand what my husband is experiencing: the pain he's feeling, and the emotional toll that his illness has on him and his ability to provide for our family.
I am also a person and am living this one life I have been given. I don't think it's unreasonable for me to question my future... I want to feel alive, and I haven't felt alive in years. And I feel like I constantly have to defend that to people who think I am a bad person for wanting more, just because I have a sick spouse. So I feel incredible guilt and shame. Gee I'd love to have some physical contact from time to time, and it is well documented that marriages without any physical connection are bound to falling apart. We have no family and support system nearby. When our children sleep over at a friend, my husband will take me out, which consists of him ordering us coffee and asking for the bill at the same time. My friends now ask me whether we went out or not, almost as a condition for them babysitting, because they know how desperate I am to feel excited about something!
Since my last post I have started working 3 days a week - I'm a graphic designer. It's a job which is way below my capabilities, but because I am chronically depressed and medicated to the hilt, it is good for me. I think the time away from my husband has also helped us. I am living on auto pilot now. Life is simply hard. Everything is hard. I find little joy in anything, besides seeing my children have fun. Leaving my husband is still a remote possibility from time to time, and suicide has become less of an option, but what I am desperate for is to feel alive.
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There is so much in your story that resonates with mine, only I'm the sick one in my relationship. I live in that sort of atmosphere but it comes from my husbands anger at me. Maybe deep down there is a belief that I should 'push through' my pain or the effects of my brain stem stroke towards more normalcy. I know he feels robbed, like you do. Its hard to find 'fate' or the randomness of life to look them in the eyes and say "you have ruined my life" so its much easier (yet so much harder) to do that to us. Does your husband know about your suicide attempt? What did you want from that...to leave your children alone with a man who is clearly struggling with grief and anger ans the loss of his own expectations of life? Did you want him to say "hey babe..you are clearly more miserable than I am..feel free to leave"? If you had wanted to die you would have succeeded so clearly you were saying I NEED HELP. I dont know what's available in your country...any respite care? Support groups? Extended family? Don't be a martyr and be silent, find someone to talk to. Maybe don't broadcast your sex life situation but your need for help..yes. Don't think for a minute your husband isn't aware of how you feel and don't think it doesn't make him unhappier, angrier and even more guilt ridden. Neither of you asked for this - hell it could have been you that got sick. How would you feel living with the knowledge your spouse tried to kill themselves because of your health situation?
May 14, 2015 - 1:58pmLife is not a box of fluffies love - time to harden up. Get help but most if all, get back to talking to your husband honestly. You did make a vow - I think this is the reason 'in sickness or in health' is in there.
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Thanks for your response. All I can say is that your words are hurtful. I realise you are most probably very angry yourself. I am certainly not a martyr, just a regular woman who needs to feel loved and cherished, and alive. And if you re read my post you will see that I am working through how my husband's peripheral neuropathy has changed all our lives. I'm simply trying to survive in a situation where I feel hopeless and so very tired. Your harsh words don't help.
February 10, 2016 - 11:14amThis Comment
Thanks for your response. All I can say is that your words are hurtful. I realise you are most probably very angry yourself. I am certainly not a martyr, just a regular woman who needs to feel loved and cherished, and alive. And if you re read my post you will see that I am working through how my husband's peripheral neuropathy has changed all our lives. I'm simply trying to survive in a situation where I feel hopeless and so very tired. Your harsh words don't help.
February 10, 2016 - 11:06amThis Comment
It isn't east sharing a life with a disabled spouse. Key word...SHARING. Often times the spouse of a disabled person works over time caring for their loved one, paying bills, taking care of the house and children, and not spending much time taking care of themselves. Though they don't experience the disability first hand, they do live with it every day. It is a tough, and lonely place to be a caregiver, and yet we can't complain or lean on our better half when times are tough because they need us to be strong for them. Sweetheart, don't listen to any harsh comments from people about how you are feeling. It isn't your husband you want to leave, it is his disability...the invisible force that has taken over your lives. I am sure he wishes he could get away from it as well. Give yourself some time to care for yourself, you deserve it! And don't let guilt creep in when you feel overwhelmed, it is hard enough with everything you are going through together with your husband. Keep your chin up!!!
May 9, 2015 - 1:01pmThis Comment
That is the most succinct way I have seen it put...its not him you want to leave, it's his disability.
May 17, 2015 - 2:50pmOh dear Lord I wish I could leave mine.....
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Any man that gets brought back to your side through anything other than honest love Is A: not going to stay and B: not worth having
May 1, 2015 - 1:37pmThis Comment
I'm so sick of people leaving their sick loved ones just due to emotional hardship. Strap one on. Your man is going through a lot more than you could ever dream of, and you're going to leave him for a shiny new version? You're a pathetic sac of shit.
April 30, 2015 - 10:31pmThis Comment
I have been "strapping one on" for 21 years. I'm emotionally empty and have been for years.
July 27, 2015 - 10:32amThis Comment