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Is your spouse chronically ill? How is it affecting you?

By HERWriter Guide March 3, 2018 - 12:00am

Hi All

Thanks to lonely46 for starting this group.

Living with a chronically ill partner can be devastatingly lonely and frustrating, and it's not something society really lets us talk about.

The issue is not about whether we love or care about our ill spouse, it's about the harsh "side effects" that the caregiver suffers. While it's never easy to live with chronic illness, it's also not easy for the caretaker.

Let's share stories about life as the caretaker and the hardships (as well as the joys) of life. We can find comfort and support in knowing that we're not alone.


Here is another resource on sick spouse

By August 10, 2016 - 9:27am

I'm new here. I've been married for 19 years to my husband. He is 18 years older than I am. I naively thought that age was just a number. His health has deteriorated over the last three years. It started with him going into cardiac arrest - he was dying and they were able to revive him. He now has a pacemaker. We went through that scare and then 8 months later was put on dialysis. I figured I could be a kidney donor but that has been a slow process. Now he may lose his foot due to diabetes. I am 45 years old and he is aging faster than my parents. I feel like such a bitch for wanting to pack up and leave. I'm tired of him always being sick. It's always something and it doesn't feel like things are going to ever get better. We have a 17 year old daughter who is also affected by his health issues. We don't go out like we used to and we haven't been intimate in over 10 years since he is also impotent. I resent him for ever dating me. I was a naive 22 year old with low self esteem and never thought anyone would want me. I always wanted more children and he took that away from me. I am just tired and want to leave, but I feel sorry for him. I wish he would love me enough to leave me and let me try to find happiness elsewhere. Thanks for listening to my rant but there isn't anyone I could really talk about this with. Anna

August 10, 2016 - 9:27am
By July 30, 2016 - 9:07am

I hope this finds you well. I too have a spouse with chronic illnesses. I understand every word of what you're saying. For me, there are some differences but overall I get it. You have to find some moments for yourself. It's not selfish at all because you can't be any good to her or your little one if you aren't taking care of yourself. That's so important. You are a human being first and foremost. Yes, it's extremely difficult for her and she is the one experiencing pain but you are experiencing emotional pain as well. These illnesses affect everyone and everything. How you engage and relate to one another. It takes it toll which is why you have to find time for yourself and to be together. Also understand that she probably feels some guilt as well. I mean think about if the tables were turned. When I get my fill I go there to remind myself if I were to be in the same situation. It's a lot I know but the first step is what you've already done in finding an outlet. There is no judgement.

July 30, 2016 - 9:07am
By July 30, 2016 - 8:57am

Sorry to hear of all that's going on with you and your family.
You have to make a decision because the illness doesn't go away. There will be some ebb and flow of how he's feeling from day to day, week to week, and so on. You mentioned that he's had several surgeries. He's probably not going to have a "normal" life again. However, find some time for just the two of you and try suggesting some things such as support groups, or a therapist. Also, physical therapy. I'm not sure what kind of insurance he has but take care of that and also apply for disability.
Also take into consideration there is depression associated with chronic illness. Hence, therapy.
All and all, understand that he will not and is not the man you met. You have decisions to make. There is nothing wrong should you decide you can't handle it. Being a caretaker is hard work. Should you decide to stay get some
Help for yourself as well and make sure you are taking care of you. Be well on your journey.

July 30, 2016 - 8:57am
By July 28, 2016 - 1:28pm

Insurance Mom - for Heaven's Sake don't. Getting married because you feel sorry for someone isn't the best reason. The doubts are't going to go away but once you are married it will be far more difficult to break up. Give yourself a breathing space, think of your kids; have a holiday with a girl friend but don't marry yourself into being a perpetual nurse.

July 28, 2016 - 1:28pm
By July 26, 2016 - 9:26am

I am so glad I found this. I need someplace to vent and try to figure out some things. I have been dating my fiance for 5 years now. When we started dating he had a full time job, good pay and was self sufficient. He moved into my house with my children and I and about 2 moths later had a serious attack of Transverse Myelitis. I have stood by him through it all, we are very fortunate that I have job that can support us both, but things are getting tight. He hasnt worked since the first attack. He has had numerous knee and back surgeries and is on so much pain medication that some days he doesnt get out of bed. I feel like he should be trying to do more to help around the house and support us. He has terrible mood swings from the medication and is very critical of my kids. I cant imagine my life without him but I am really getting tired of doing everything. We are getting married in less then 2 weeks and I am having some serious doubts.

July 26, 2016 - 9:26am
By July 18, 2016 - 9:11am

Thank you so much for this thread. Reading everyone's stories has been incredible this morning after feeling alone for so many years. I'm a guy, so hopefully it's ok to post here...there is so little available for spouses dealing with a spouse with chronic illness, and it seems even less available for husbands. This is the only place I've found, either online or in person, so thank you.

My wife and I are still fairly young, and she is by all accounts the love of my life and my soulmate. Our marriage of ten years has also been constantly plagued by her chronic illnesses. Though diagnosed with Celiac, there must be more as no treatments have helped. She struggles daily just to make it out of bed, and it hurts me to watch her struggle. I try so hard to be the support she needs, but I have to admit how many times I fail. Between working all hours of the day and night to support us financially as well as her health and treatment costs, caring for our two-year-old, and caring for her, I sometimes have nothing left to give her in the way of support, and I know that's what she really needs. But food has to be put on the table, and our son has to be cared for too. I run my own business, so fortunately (and unfortunately) I'm able to work extra and take extra clients when we're in danger of not making it due to health bills, and the other day I was up at 5 AM with our son, then worked 20 hours straight into 2 AM the next morning, and then cared for both of them all the next morning and afternoon because she couldn't move, and then immediately off to work again until 1 AM. She does her absolute best, and it breaks my heart to watch her try so hard and become so frustrated. In fact, she does such an amazing job despite all her illnesses though, that I feel like the biggest jerk in the world if I mention (even to myself) not having slept in 24 hours, or in two years, or how exhausted I am every second from being husband, father, caregiver, provider, medical expense benefactor, and therapist. It sounds so selfish, but I haven't done anything for myself in years now. And I used to not have to...we used to do everything together. And now we're trapped.

I feel guilty even talking about it with anyone, because she's the one suffering. Reading all your stories has been one of the most encouraging things of my last ten years. So thank you.

July 18, 2016 - 9:11am
By July 13, 2016 - 9:48am

I am glad that this thread exists! I see a bit of myself in every single entry. My husband suffers from multiple chronic illnesses. It has been years. Most of the time I can handle it. When I get overwhelmed, there is nowhere to go, no one to help. So I just muster on. His children (previous marriages) are loving, attentive, nice people. They have their own lives to live and I wish for them to enjoy it all while they are young and happy. Yes, he can be really miserable. The pain, medications and medical appointments have taken over our lives. When I do manage to get away I feel guilty the whole time because there is no escape for him. I don't like to talk about our situation because think it must just sound like a lot of complaining so I just keep it to myself. I love my husband, and he loves me so I feel awful even saying this - but - I miss the sex. I like to think I would never stray. I never have. I fear that if given the chance I might. I feel guilty about something I haven't even done.

July 13, 2016 - 9:48am
By July 10, 2016 - 6:43pm

Hi everyone,
Finding this site really filled in a hole of loneliness that I was feeling from my husband's illness. My husband has absent seizures caused from 2 brain surgeries from a nasal infection that lead to the brain and the scar from the surgery gives him seizures, carpel tunnel, neuropathy, ulcerative colitis, and a herniated disc. And to top it all we are a young married couple in our late 20s. I only knew of the seizures when we first met, and he functioned normally. But as the years went by, he started getting more and more sick to the point where his illness got him fired from his last job. We are trying to do school, luckily our parents help out as much as they can. But neither of our parents know how really sick he is. We have not had sex in a month because I am not attracted to him in that way....because I am too busy being his nurse, friend and mom, that I hardly feel like a wife anymore. The medications give him terrible mood swings and his illness makes me have to help him with his school work and my own. So I am just tired. I try not to resent him whenever I get sick because I still have to go to work and he helps sometimes because I do IHSS for my grandma, but the help he gives is like i can do that myself. When he is well enough to move, it only means his seizures and his back are okay, but it hurts him to walk. If he had it his way he would normally not get up for the day until 3pm in the afternoon. I lost a child through miscarriage a week before our wedding, and though it hurt us real bad when we lost the child, I sometimes am glad because then I would not have to worry about being a single parent in the marriage. Don't get me wrong, he is a wonderful friend and he manages to get through the day to go to class and sometimes make dinner. But.....I feel he is 25% my husband. The rest is all me and it is exhausting. And I really feel the strain on my mind and body when I need him to help out around the house, when my body is just exhausted or when I get sick. I can't talk to any of my friends in detail because most of them are not married nor have an illness of a loved one to care for, and my parents worry too much. I know I am talking too much, but i just wanted to vent to other people who knew or had similar stories so I don't feel like an inconsiderate, awful wife. Thank you for listening.

July 10, 2016 - 6:43pm
By June 1, 2016 - 3:39am

I hear you! But it also seems to me that you are being typically hard on yourself - blaming yourself. Why do we women do that so easily? I too have found myself telling friends that if I were a better person, a kinder person, my husband would be in better condition. They point out that that is crazy, but it IS so hard not to think that way. We are so conditioned and even judged by how caring and understanding and giving and patient we are toward the people in our lives. If we just express being fed up and if we dare stop caring, we feel we are failing as women. I often simply don't like my partner at all anymore; there are times I find him physically repulsive and his illness has made his body totally unappealing to me. Why can't i just say that without feeling like the world's biggest B? It is the truth. We have the right to take care of ourselves and we also have the right to be happy. We have to stop thinking we'r selfish and bad when we put ourselves first.

June 1, 2016 - 3:39am
By May 30, 2016 - 2:02am

My partner and I have been together for 9 years and throughout that time he has suffered periodic back problems which stem from prolapsed disks and degenerative joints. From the start it affected our intimacy and we haven't had sex in a number of years... Which I can live with, although it has changed the dynamic of our relationship. More often than not I am the one who has to carry out all the difficult lifting, and after several years of home improvements I seem to be the one who always has to carry out the hard work. Although he is very proactive about his exercise and recovery it's after quite selfish as understandably he looks after himself first. As a sufferer of depression it is often a massive drain on me trying to stay positive for him, supporting him even when I am ill and need rest. I often feel selfish for feeling overwhelmed each time he relapses and I dread the future and how much more support he will need. It's nice to know that I'm not going through these feelings alone. Should I be more compassionate, should I be more understanding.... Probably, but I often feel more like a best friend/ carer than equal partner.

May 30, 2016 - 2:02am

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