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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 October 30, 2014 - 10:22am

I know this group isn't very active, but I need to let it out.
My husband and I are newlyweds, we got married in July. We have dated off and on for about 10 years, his health issues were what drove us apart. He had severe sleep apnea and wouldn't use the mask to treat it. He would fall asleep all the time--if he sat longer than 20 minutes, he would nod off. We also had a son together--this caused a lot of issues. This time, I told him for this to work he had to take care of himself. Now he can stay wake during the day--its wonderful ! But..this has lead to other health issues popping up.
He has mental health issues on top of health issues. He has bipolar disorder (under control with medications), sleep apnea, type two diabetic with diabetic nerve pain and foot drop/numbness (which causes mobility issues) and low oxygen saturations levels (he had to be on home oxygen for a few months). And he can't work and get a very small disability payments-which means we are relying on government assistance and can't afford a car.
Its so hard--I love him but I am grieving over the husband he could have been. There is no one I can turn to--it feels like I am all alone. If I vent, its looked down upon. Thanks for letting me vent.

October 30, 2014 - 10:22am
By August 23, 2014 - 5:27pm

Hi, everyone. I'm new here, and I'm so thankful to have stumbled upon this thread. I heard bits and pieces of my own life story in your posts. My heart goes out to you all.

I have been married for 10 years, and for the past 6 years my husband's health has steadily declined. It has been especially hard to cope with because he really hasn't received a definitive diagnosis. It's just been a long list of conditions that have been ruled out. I feel guilty because it's only been in the past year and a half that I have really become supportive of him due to my own untreated mental illness.

We are still so young, and although I have finally reached the point of acceptance of his chronic illnesses, I still have so much sadness and anger at times. I feel like our lives were ripped away from us before we even had the chance to really live. He will turn 36 this November, and I will be 30 next January.

August 23, 2014 - 5:27pm
By December 27, 2013 - 10:27pm

My husband has had some sort of chronic issue for most of our 33 years of married life. It started with multiple surgeries for his back, neck, hernia, gallbladder, knees, ankles and most recently both knees replaced. I think he's had 16 surgeries . Now he has a gastrointestinal issue that is extremely painful (3+ years) that causes nausea and vomiting. They are unable to diagnosis the problem... Yet he continues to eat and is now over 300 lbs.. Thankfully he's 6'2" but that is still a good deal of weight for his frame. I love him very much but am at my wits end. I get that he has pain but he's so angry and I never know what is going to set him off. He's not violent toward me (sometimes I wish he were, then I'd have a real reason to leave) but his highs and lows are almost more than I can take. We walk on eggshells to keep from setting him off.
If I try and say anything about it he turns it around on me. That or he tells me how "sorry" he is. Sorry isn't cutting it.
I'm sick of this pity party I attend much to frequently but am not sure exactly how to stop it. I am at the point of barely speaking to him as the less I say the less chance there is of setting him off...again.
I have to say that I'm super blessed in that I work fulltime (I thank God for my job and a place to go daily). While I'm gone he does usually manage to get dinner ready and does some laundry. But his days are filled with the computer... Facebook and reading. So nothing much else gets done around here although our home is and has been in the middle of a remodel project of one kind or another for the last 20+ years... grrrr...
Okay, thank you for letting me vent. I just need to get this off my shoulders. I can't talk to family and friends about it as I don't want to turn them against him on my behalf. My son (30+) already has to deal with it and doesn't need to hear about it from me. Thanks for this forum... Sorry for being such a big whiney baby...

December 27, 2013 - 10:27pm
By December 12, 2013 - 2:55pm

I have been married for almost 30 years. My wife has always had something. First it was Crones, then back and neck and allergies, and every cold and flu you can imagine and on and on and on. I have finally accepted that she is a chronically ill person. Most of the time, I am patient and can handle it. However, at times, I become very frustrated and depressed about it. I look around at family and friends and see how NORMAL their lives are. They travel and do things, while we stay and home. Its has come to the point that I cannot have a conversation with her without talking about her problems. Our whole world is about her and her issues. Normally, I can handle it.. But today. I want to scream and feel sorry for myself that I am stuck.

December 12, 2013 - 2:55pm
By November 18, 2013 - 10:09am

My husband has Meniere's Disease, and also suffers from depression, anxiety, and phobias. His whole life is about his illness, symptoms, and frequent doctor visits. All he ever talks about or thinks about is his Meniere's Disease. He says that I can't understand how awful it is, because I don't have it...which I suppose is true. However, I truly believe that his symptoms are made worse by his depression and the obsessive amount of time spent on the online support group chatting about his illness, the symptoms, and the potential side effects of his medications/treatments. He is entirely negative about everything in life! I feel alone, isolated, frustrated, and frankly neglected. As I told him last night, "We don't have a marriage anymore, we just have Meniere's".

November 18, 2013 - 10:09am
By August 8, 2013 - 9:41am

Thanks everyone for sharing your stories. I too have a husband who has been chronically ill with back issues and nerve damage for 10 years. We have always have had a very passionate and loving sex life. However, in the past 2 years our sexual relationship has decreased to nothing. He had a pain pump implanted in December and since this surgery sex has become painful for him. It even is painful for him to get aroused so finding alternative means to be close is not an option. I love my husband with all of my heart (we will be married 24 years this year) but I feel so lonely. From going to a loving and passionate sex life to nothing has been devastating to me. I have tried other ways to satisfy myself but end up feeling more lonely. I am 42, my husband is 45 so we are still young and in the prime of our lives. My husbands health has impacted him greatly, he suffers from depression as well has been diagnosed with PTSD. It's so many issues on top of each other and I try to be understanding but his health has made him into a selfish and self centered person who quite frankly does not love himself like he used to. This in turn impacts me and my kids in a negative way.

I am trying and going to counseling but my emotions overwhelm me at times and I just feel sad even depressed. He also is going to start counseling to get his head straight himself as well and we cannot even start marriage counseling until he gets himself together first.

I am really trying and don't want a divorce but in the end he may want out because he feels like he cannot meet my needs emotionally and sexually. I am a beautiful, loving and fun person who is successful professional and does deserve to be loved. I am very torn up inside due to all of this. Does anyone have any advice or can share what they have done to cope?

August 8, 2013 - 9:41am
By August 5, 2013 - 12:19pm

My husband has psoriatic arthritis, he was diagnosed nearly three years ago. There is so much to say regarding the matter, I don't even know where to begin...this is the second draft of me telling my story, the first was very lengthy, as the matter has been going on since we met. There is an underlying illness here that was diagnosed when he was in the military, but is not being treated. I have been the pain pill hoarder. I am the HUGE bitch that never allows him to make any decisions on his own, nothing is ever good enough for, never lets him sleep in until however long he wants, turns the kids against him, and ultimately the reason we have no friends. That is entirely esoteric, I know, but it is all I can manage to get out right now. I more often that not, want this relationship to be over. I want somebody to take care of me for a change, or better yet, A PARTNERSHIP. I am sick of being the bad guy in the marriage, and then told I am making him out to be the bad guy. Why do either of us have to be the bad guy? I know that I am fed up with his illness, but often times, I feel like he is using his illness in order to do what he really would prefer to be, or not be, doing. How can I take this for my entire life? IS THIS MY LIFE? Somebody, please, help me!

August 5, 2013 - 12:19pm
By August 4, 2013 - 2:40pm

My husband is chronicly ill with Heart failure and lung disease and many other small things that add up and he is only 39, I am 31 and feel like I am in the prime of my life, I have never feltt better physially.
Theres always a but.....My husband is like a stranger to me now, he is the opposite of what I married and I know people change I know I have but I live everyday in this struggle with myself .
His health has changed him in a negative way, towards me and my kids....I dont think he even loves himself. I dont know how long he has to live but I have had a very bad feeling lately and I cannot shake it. He gets sick and instead of getting better like before he was sick......he just stays where he is at, maybe gets worse.
I feel like Im waiting for that call, I cannot take this anymore.
My best friend is gone, I feel like i am mourning him while he is still here but I cannot help this... I dont know what to do, Im so lost...

August 4, 2013 - 2:40pm
By June 26, 2013 - 7:00pm

I'm lonely when my husband is in bed all day. It's not like I don't have things to do, but I find it hard to motivate myself when he's not around. I usually sit on the computer too long. Wish I could just treat it like any other day and do what I like and enjoy, but I find it so hard to be alone. I want someone to talk to as I go about my day - that just seems to create energy for me. I do go for walks and end up talking to anyone who seems to be looking to talk too. That helps, but it's not a cure all for sure. Hanging in there though.

June 26, 2013 - 7:00pm
By February 14, 2013 - 5:03am

Dear Jones35
First of all, I'm new here and my husband and I have been dealing with his chronic illness for 5 yrs now which is nothing compared to some. I have so much to learn myself but I hope you don't mind me offering my opinion? Eeechem...:) here goes. I think that you have done a very good thing in finding this forum a place for you to be honest despite your feeling you may not be responded to which is obviously not the case. The very first thing I would like to point out is that for no reason shoud you feel guilty about the feelings you're having. Everything you stated is a completely normal part of being a human being. I would say that even if your post had outright said something like "my wife is sick and we haven't had sex in 10 yrs. I don't want to cheat on her but a man has needs and I'm not sure how to cope." Now I know that's nothing close to what you implied. I think you are lonely and in a place many of us are trying to care for the one we love, as we promised we would yet still balance our own health without becoming too fatiued, burned out and emotionally drained. All the while we're trying not to feel bad about fantasizing about what it would be like to have a "normal spouse" that was able to actively participate in all the things a "normal" married couple would. Here's the thing, you obviously love your wife. That's true or you wouldn't be here on the internet searching for ways to help yourself in order to better help her yet still remain honest. You wrote your feelings down the best you could for the public to scrutinize in the truest fashion you could. Only a man who loves his wife more than himself would do such a thing. You are a good husband and my hat is off to you! Many men would have given up a long time ago. Ok, enough of that let's talk about your problem. You're not happy, correct? You have concluded that your unhappiness is due to lack of intamacy and human connection. In short, you are "lonely." Let me assure you that your longing for basic human needs cannot be ignored despite your wife's condition. They can be for a time but at some point you will burn out and eventually throw in the hat. Connection with other humans and though some may argue, I believe that sexual fufillment are basic human needs. God designed us to crave those things for a purpose. Now please don't misunderstand me as I'm not saying that if your wife is unable to have sex with you how and when you want and if she's unable to be intimate with you the way you dream of in your head then you're needs are being ignored and therefore you have a free pass to leave her. I do suggest that you may need to make some adjustments to what you feel you need in order to be content for the sake of your marriage. What exactly is intamacy and human connection to you? By what acts or through what words or feelings are these two things achieved? Be specific. Now I know you have thought of ways a healthy woman could meet these standards or you wouldn't be conflicted to begin with. So the challenge is to find ways that a woman with limited ability to physically function could meet these needs. Can you comprimise or adjust these needs in a way that your wife could likely achieve them? Maybe you could benifit from counseling to help you identify what it is you truly feel you are missing on the deepest of levels. Now the other aspect is her willingness. Is she aware of your feelings?How does she feel? Is she willing to work with you? Yes she is sick but she is still responsible to hold up her end of the marriage deal to the best of her ability. Being sick does not exempt her from giving what she is functionally able to in order to enrich your life. If she's unwilling to make these attempts then you have another issue entirely. Maybe the two of you need to seek counseling with a professional who understands chronic illness and not only how it affects the afflicted but the family as well. I think I have said enough and I truly hope something I've rambled about helps you to find fufillment in your marriage despite your wife's illness. Oh, one more thing, the best advice a therapist ever gave was that if we wanted to regain connection with one another and be happy doing it then we needed to make 1 simple rule. That rule was that my husbands pain, dr appts, upcoming tests etc could not be discussed under the roof of our house. Even if we had to step outside our front door to honor this rule. That was very very difficult for a while and at first we didn't know what to say to one another. Our lives completly revolved around his pain and his illness. It didn't take long before silent the silent momments got further and further apart until I was able to discuss my day and my feelings with him and get his input. It can work out if the two of you commit to working at it. Good luck and God bless!

February 14, 2013 - 5:03am

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