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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 married my husband 8 years ago, know he has MS. Over time he had changed as well. I'm 25 he is 29 we have a 3 year old son, some days I feel like an awful person for considering the idea of leaving him. I could use someone who relates, please reach out.
My name is Amanda.
October 8, 2015 - 8:52amThis Comment
Amanda,
While I cannot relate in the MS experience, I can relate in the sense of what it is like to be a young person who is dealing with a spouse with significant medical issues. I sound awful saying this, but lately there are so many days where I really have come to hate the marriage vow term "in sickness and in health." Naively, I assumed this was something that would only happen occasionally in my 20's-50's, and expected it to be daily occurrence once we got old and were falling apart together (for lack of a better word). I thought we could enjoy our 20's in youthful bliss, but some back injuries changed this. His back injuries became rather severe due to his unwillingness to address them regardless of how much I begged him to seek treatment. When he eventually sought treatment, the problem was so bad that he could not sit 10 minutes without being in pain. This has literally destroyed everything we like to do. We can't hike, bike, kayak in the most extreme senses, but we also can't even go to a dinner party where his complaining makes it awkwardly miserable for myself or the hosts to even try to have a good time. He's destroyed my social life, and many of my friendships because he puts me in this awkward position where he makes me feel guilty for going without him but complains the whole time when I take him. I can't help but absolutely resent him for all of this. I feel held back in life, and I feel I am missing so many things in the world that I want to do, all because he refused to listen to me about taking care of the problems when they were small. I do so many things to accommodate his condition, and he just gets angry at me for trying to ease his burdens, which makes it even more difficult for me to resent him. Every day, I think more and more about leaving him, and I feel absolutely terrible that I even have these feelings.
December 29, 2015 - 7:00pmThis Comment
Hi Amanda, I'm in a similar position . Life just isn't the same as when we got married and we aren't the same people, so much has happened including personality changes. The connection we had has gone, some days it feels like the only reason I stay is because of his MS and not abandoning him sticking to my vows. I don't want to break our family up but it is so hard, I feel so alone - some people don't understand the affect that a health problem can have on both people not just the sick one.
November 7, 2015 - 1:51pmThis Comment
I can't tell you what your situation is. I am the sick one in our relationship. My husband chaffes against me and makes me worse while yelling at me to get better. I am becoming angry and bitter because he makes promises he cannot keep. He lies and tells me know what he thinks I want to hear because telling me the truth would be cruel in his mind. He goes on business trips and is extremely rude to me the entire time he is gone and quite frankly his dishonesty is literally killing me. And he does not care. My only advice is be honest about how you feel with your husband. Reflectively listen. Then together talk about unrealistic expectations on both sides. Better to leave than stay if your anger with him or his anger with you is getting in the way of recovery.
October 6, 2015 - 5:20pmThis Comment
Let me see if I can help out from a sick person's point of view. There are a few dynamics which need to be considered that if you've never been sick long term, you might not know to consider. When the body is sick it does not function properly. That includes the brain. Which means, one symptom of being ill can be severe personality change. I have been battling cancer and have won just to see it come back. When I am well my personality returns. I am no longer codependent, angry, snapping, paranoid, full of guilt, fear, frustration, constant pain , anger at the world. When the body functions the mind returns' at least in my case. Maybe not exactly the same, but close. When I was ill, I tried to convince my spouse to leave. I felt selfish needing someone so much and watching them take on all the things I usually take on. Being sick is like becoming a living ghost. You cannot participate in life. You can only watch as it goes by you. When we become elders, we all go through this. Eventually, each of us will need another person in this way. This was one reason my wife chose not to leave. Another reason is as soon as I had "a good day" I took advantage of that to help her, to sacrifice my very small amount of precious time on her because she has been so selfless for me. I don't on her, make love to her, tell her how beautiful she is and take the opportunity to go out of my way to do as much as I can. Just this little bit got us through. In situations where there are no good days, were I in your husbands shies, I would selflessly leave or find a way to chase her off so she wouldn't have to go through this. Why should she become a ghost before her time? Perhaps this is a sign your husband is trying to chase you off? Men are too many times closed lipped about these sorts of things. Or it could be that his illness is having a common chemical change on the mind. If it seems he is not himself and the change happens suddenly, like a switch, I would be very suspicious that this is actually a symptom of his illness. If he is just becoming angry with the world, this will pass. Everyone who is sick lopg term or faces a terminal illnessesgoes through stages of grief and anger, but these states pass given time. Now, I don't assume I can give you your answers, but hopefully with see facts, you can come to a decision that feels right for you, when we love someone, we do not WANT to prolong their suffering. Just a thought.
September 27, 2015 - 6:48amThis Comment
I agree whole heartedly with the sick husband who feels like a ghost and tries to get his caretaker to take a break when he's ill. My husband and I have been married 35 years and 11 years ago I began the grueling journey of autoimmune illnesses that stopped my career, made me so ill in so many different ways and my husband has been a saint through it all . All the way until 3 years ago he blew up and said he hated me because I was sick all the time. I thought that by never letting him get overworked again by outscourcing all my care would save our marriage but he wanted to "fix" me and I just can't be fixed. He can't deal with the guilt of leaving me and he's not, really. He's paying all the bills and a phone call will bring him to help for emergencies. We're trying a separation for 3 months to see if I can live with a man who hates illness and he can love a woman who is ill. Chronic illness is a heart breaker if ever there is one. I'm afraid of abandonment even though I don't blame anyone for needing to get away.
July 8, 2016 - 11:04pmThis Comment
Thank you for giving me another way of looking at this. Best wishes to you and your wife
November 6, 2015 - 9:37amThis Comment
Wow, best of luck to you sir in this life or the next. I hope when the time comes for me to live as a ghost or spectator I will carry the same wisdom and courage as you. You have a solid understanding of life. May God bless you and yours.
October 12, 2015 - 7:05pmThis Comment
Thank you.
October 17, 2015 - 7:41pmThis Comment
Please forgive the typos. I am on an iPad.
September 27, 2015 - 6:52amThis Comment