Hide This

FREEHER HealthToolkit

HER Health Toolkit

Sign up for EmpowHER updates and you'll receive our
FREE HER Health Toolkit

Group Leader

Related Topics

Description

Spouses dealing with chronically ill spouses, without sexually or emotionally connections

Location

New Castle De

Privacy

This Group is Open to all EmpowHER.com members

affairs of the heart Join this Group

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

By Susan Cody HERWriter Guide June 1, 2011 - 8:37am

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.

Best,
~Susan

By Carley 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 Total B 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 ametals 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 MDwife 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 Susan Cody HERWriter Guide September 6, 2013 - 8:41am

Hi islandbrook

I'm so sorry you are in this situation and you're right, you have a lot of life ahead of you so something has to change.

I hope that counseling with help both of you (both individually and then as a couple).

Do you have outside interests? I know that you likely have little time for activities away from kids, your work and caring for your husband but having something all to yourself might really help you. Everyone needs a little 'me' time, especially people like you who get very little of it.

I think joining a caregivers group is also a good idea.

About sex - I can't give advice on this because it's a medical issue with your husband. Could you and he talk to his doctor about this?

We hope to hear back from you!

Susan

September 6, 2013 - 8:41am
By Islandbrook 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 Sarrah Patton 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 Susan Cody HERWriter Guide August 5, 2013 - 9:20am

Hi Cera

You have responses on your individual post - check them out!

Susan

August 5, 2013 - 9:20am
By Cera Rose Mergen 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 LissaM 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