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Friday, July 15, 2011

What Do You Do When Illness Makes Sex Impossible?


What do you do when your partner is no longer interested in or capable of sexual intimacy with you?

Illness takes many tolls, on both partners. One of them is too often sexual intimacy. Medications, pain, and exhaustion can not only turn a libido off, but it can also make intercourse painful for the ill partner. The well partner may be just too drained after a long day of caretaking, working, caring for the kids, and running the household to want anything more intimate than falling asleep side-by-side. And the shift illness produces in some partner relationship -- turning a bond of equals into one of caretaker - patient -- can make sex feel like a taboo.

For some couples, their sexual connection had always been a source of joy that filtered into the rest of the relationship, making it glow. For other couples, sex was routine and its effects remained in the bedroom. For others, sex was never a strong part of the connection.

Whatever your pre-illness sexual habits were, illness too often disturbs them. Intercourse may no longer be possible. Even touching can be problematic. Some couples whose sexual experiences were mainly physical, now find they actually have to talk about what feels good and what doesn't.

Through talking about sex, couples may find themselves entering surprisingly deeper levels of connection, and describing desires that before illness were invisible.

Some couples find ways of being intimate without intercourse. Some are able to stay connected without any form of physical intimacy. Some break apart. Some partners seek sex outside of the relationship, with or without the knowledge of their partner. (note: for the sake of safety and integrity, I would recommend that this be discussed between the partners).

I'm interested in hearing about your situation. Has your sexual relationship changed? How have you managed to deal with illness and physical intimacy?

64 comments:

Anonymous said...

I've been in a good marriage for 20 years. Since coming down with chronic fatigue a year ago I've had sex exactly three times with my husband. It isn't painful but I tire easily and can't move around after a couple of minutes. While we never had sex often when I was well (only a few times a month) we were both very active partners, both moving around a lot. Now I feel like I can't be an active participant but only lie there and I don't like it. Poor hubby who has always had a very healthy libido has stopped even trying to initiate sex.

At one point our relationship got so contentious due to the illness (not the sex) almost resulting in separation that I didn't want to sleep with him anyway. While we are back on track relationship wise I've been to ill to attempt sex this past month. I miss rolling around with him in bed and would love to be able to do this again. It is just one of the many losses brought on by this illness.

Lynda Halliger Otvos (Lynda M O) said...

This question comes up in my chronic pain group occasionally; unfortunately we in the group are all women and the proctors are both men so discussions of this type don’t get too far. Unfortunate because as you so competently pointed out, the problems exist in some form for most all us patients.

I am lucky in that my husband is older than I and not as interested as he was when we were first married twenty-five years ago. It has been a wonderful way of accommodating my waning interest.

Baffled said...

In case you missed it this was discussed over on Chronic Babe a few weeks ago.

http://www.chronicbabe.com/articles/917/

Bad Caregiver said...

When a relationship goes downhill, the lack of sex become a lot less important than the reasons you stopped having it in the first place.

That's a topic I'd love to see addressed here. Couples are likelier to split up when one person is chronically ill. What are the differences between the ones that last and the ones that dissolve? How do people like Anon above get their relationships back on track?

Anonymous said...

This is excellent! How did you learn this stuff?

Barbara Kivowitz said...

Anonymous - thank you for sharing your story. Illness takes its toll on our relationships in many ways - sex is only one of them. I'm glad you got yours back on track.

I wonder -- Maybe people who enjoyed a more active sex life miss it more. But maybe that history also helps to give the couple an important set of memories to hold onto.

Lynda - sounds like you and your husband have reached a stable sexual equilibrium that works for both of you. That's an accomplishment.

Baffled - thanks for the link to the Chronic Babe post. It has a lot of good material.

Bad Caregiver -- your point about when a relationship goes downhill, the lack of sex becomes less important than the reasons you stopped having it in the first place is very well taken. While the lack of sex may or may not be a big loss - any underlying relationship fractures can be the more serious issue.

I will take you up on writing a post about what helps a relationship stay strong when illness intrudes. I think communication is a huge factor (but not the only one)in determining whether one's relationship thrives or dissolves under the strains of illness. Have a look at the archives on this blog, especially under Communication.

Thanks to all of you for your thoughts.

Anonymous said...

I am a 19 year old and have been in a relationship for 2 years. About a half year into our relationship is when we tried to have sex and also when I found out about my vulvodynia. It always surprises me how close we have become because of what I have and how we are able to communicate to each other. I started a blog about my experiences here. http://www.followyourheart513.blogspot.com/

sewa elf said...

Nice article, thanks for the information.

Anonymous said...

I have been with my boyfriend 2 years. Everyone in our circle of friends/family considers us "companions". He has kidney disease & has had every complication out there. If there is a 1% chance of an allergic reaction, he will have it. He lost his equilibrium due to an allergic reaction to an antibiotic. He is frequently exhausted. He has no libido whatsoever. None. It has caused me a lot of heartache. I often feel unwanted or unattractive. My close male friends tell me that he is "broken" and to find someone who will love me and appreciate me. I'm often lonely. My job moved me 800 miles away 3 months ago. He plans on moving up here. I am not sure how things will go. I have told him that I feel we are truly best friends. (He has complimented me once in 2 years.) He speaks of other women in those terms, but never me. I've stopped dressing up, doing my hair, and all those things women do. I don't believe it's his condition anymore. Worse - I fear that when he gets a kidney transplant & gets better, he will find someone to love.

Barbara Kivowitz said...

Hi Anonymous. When I read your comment I can almost see you sinking. Sounds like you have a of of weight on your back. And with that weight comes loneliness, disappointment, anger, anxiety, and even depression. it also sound like a communication gap between you and your boyfriend is growing wider. This may be a time to reach out to the supports you already have in your life, and to find others -- such as a counselor/therapist - to help you find your place, in your own life; and to return some of the compassion you offer him and others to you. I hope you find your path to your own peace, and possibly to a rekindled relationship.

Anonymous said...

You are not married so why stay together. You are not happy. Just be good friends. I can see a reason to stay if you were married.

Anonymous said...

I am a 66 year old male and married to a 62 year old women. We have been married almost 20 years. We had a sex life that was a few times a month until she got sick 7 years ago. She had cervical cancer. Went thru chemo and radition, and a hystarectomy. Then cancer returned and about 5 years ago she had a 9 and a half hour surgery that took everything including her bladder. She voids her urine from her side , and has an ostomy bag. Needless to say normal intercourse is not possible. And other things really aren't either. She uses a wheelchair and Walker to get around . Her sexual interest is 0 and require a good bit of care which I do.
I have reached a point where I am considering looking for a lover. It's not that I don't love my wife but I still have a need for intimacy .
Do you have any advice or suggestions?

Barbara Kivowitz said...

Sexual intimacy is often one of the casualties of serious illness. The ill partner may have physical impairments or pain which makes intercourse difficult or impossible. And often the illness itself crushes the desire for sex. For the caregiver, who still has the ability and the interest in sex, the issue you describe in your post is a very real one (there is a story in our book about a man whose wife has MS who faced a similar situation). Some couples find new approaches to sexual intimacy - sexual touch, masturbation. Some couples substitute cuddling. Some caregivers find a sexual partner, only for sex, and continue in a loving relationship with the ill partner.

Whenever possible, it can prove important to discuss sexual intimacy with your partner. You may be able to help each other grieve for the loss of what was. You may find that while intercourse may not be possible, more is possible than what you imagine. And for some couples, the ill partner is able to come to a place of acceptance of the well partner's finding a sexual connection with someone else. This can be freeing for both people. In this situation, both partners can work together to come up with a set of "ground rules" for the outside relationship.

This is a tough, emotional situation. You know yourself and your wife the best. The only advice I can legitimately offer is to be loving and compassionate to your wife and to yourself. Only you can decide not only what you need, but also the best road to walk to find your peace.

I am going to post your story as a new main post so others can see it. There are a lot of wise people who live with illness in their relationships who most likely have ideas to share.

Anonymous said...

My husband had a life threatening illness that has left him unable to have an erection. I am 56.

There has been no sex for three years and after much deep thought I hVe decided to look for a lover.

The absence of sex has left me feeling that I love my husband very much but am no longer in love with him. Why not leave? It's complicated but I not only do I love him but I truly like, respect and enjoy this beautiful man. He is aware of my feelings but is unable to veto me taking a lover.

There is no donut that there are also financial considerations for staying as we have recently retired but certainly not the most important one as I have had a great career and would manage on my own just fine.

I will do it discreetly and continue to enjoy the other fabulous elements of our

Anonymous said...

Backpage escorts, no attachments. My wife is dying, so i understand

Anonymous said...

My spouse is ill as I myself have cancer. Our marriage has always been about giving and taking. Sex especially and my husband is and has always been very attentive to my needs as a woman, as his wife and now he feels worthless as it's been over 4 years since we've been able to enjoy that part of our marriage.

I'm trying to cope and I keep my needs to myself out of fear that he will feel guilty for something that is out of his control.

Any advice is welcomed

Anonymous said...

I'm sorry. I just saw the post about illness and the answers you gave. So feel free to delete my post. :)

Barbara Kivowitz said...

There's another thread on this topic here, where you might also find helpful ideas:

http://insicknessinhealth.blogspot.com/2016/02/illness-and-sex.html

Anonymous said...

My husband becomes very angry concerning our lack of sex!! We had a very sexually active relationship for several years but my desire has wanted the past 2-3 years due to health issues. We have sex a few times a month but it's never enough for my husband. He's becoming more angry & talks about sex every time we talk. We can no longer have a normal conversation due to him talking about sex. I dread any communication with him as sex will certainly be the main topic. I'm afraid his obsession with sex isn't normal. I'm considering leaving the marriage due to his inability to enjoy anything more than discussing sex & sexual acts. I do love him so much & he was my best friend but his pushing sex down my throat everyday is turning me away.


Barbara Kivowitz said...

Hi Anonymous. It sounds like the desire difference is becoming a bigger and bigger wedge between you and your husband. I'm imaging that many of the conversations involve him expressing his needs with little room left over for you to have your needs not only expressed, but really heard. And it sound like no boundaries have been set around the sex conversations so they spill into everything. My only suggestion is to see a good therapist -- either a couples therapist to help you both, or a therapist for you -- to support you and help you strategize.

MooseWrestler said...

I've been with my wife for ten years. We have two wonderful children. After the second child she started to always be tired in the evenings, and even when we would have the house to ourselves for a few days thanks to extended family taking the children for a night or two, she wouldn't be interested in anything physical.

Where we used to have sex two or three times a week, there started to be a few weeks between encounters. Then months. The last time we had sex were we had a mutual orgasm was September of last year- we had sex in November around my birthday, and she orgasmed and wanted to stop... leaving me to finish myself off in the shower afterwards.

Two months later we discovered she had a non-cancerous tumor on her ovary, causing her pain. We haven't had sex since that time in November, and I miss physical intimacy. I feel like I'm being an ass even thinking of trying to initiate it, as she's never in the mood (for good reason). Between that, and the already dying libido she had well before that diagnosis, makes me feel sometimes like she's not here because she finds me physically attractive anymore, but because it would upset the apple cart to try to change things, and make life hard for the kids.

I feel less and less lover and more and more taken for granted as time goes on.

Her surgery will be soon, and I hope to God when she's recovered I'm able to kindle some of the fire she had for me when we got together... as right now I feel worthless and unwanted.

Barbara Kivowitz said...

I do feel for your heart and body ache. Illness can shine a light on relationship and intimacy issues - which make them more evident, and hopefully more discussable. It can help to use the guidance of a trained counselor to help the couple navigate to difficult waters when talking about differences in desire, and the emotional implications. Sometimes there are issue that lie underneath that can be clarified and rectified, and that can foster a shift in intimacy. Sometimes new techniques need to be learned, especially when pain is involved. One final thought - to the extent possible, try to protect and support your own self worth. Her lack of expressed interest is not a direct statement about your value, or your attractiveness.

Anonymous said...

My wife has cancer. We have been married for twenty six years. For 22 of those years, our love life was as good as it gets. Can't even hug her now, without her hurting. She has aged so much due to her illness. Even she says she doesn't recognize that person she sees in the mirror anymore. Her moods have changed. She is not a nice person most of the time anymore, due to all the medication she is taking. I love my wife, but I'm not in love with her anymore. I'm not real religious, but I do believe in Jesus, and still will uphold my vows, because of my religious convictions. I have never cheated on her,and never will. I truly want her to get better, And still be by her side through this. However sex and living happy, don't exist for me.Funny thing, I know it's not about Me. But when will it be about me? Guess when she passes huh? When that happens, I will really be a mess. Beause I don't want that to ever happen... Like I said before, I love my wife, and always will..... was a great life, with her for a very long time. Not leaving her side now. Signed, very horney. Not a kid anymore either. So don't say maturation. Because masturbating is no fun, when your used to having a wife,you made love to for so long. Mastubation is very boring. Need love, love that I had. Nothing else will satisfy me...

Anonymous said...

Hello Anonymous,
I am right there with you, married 23 years, however my wife has several other complications but not cancer, and is pretty much incapacitated and bedridden. Your post is almost a mirror image of what I am going through. My counselor is pushing the masturbation, and I totally agree with you, it is definitely not the same, or will never be, the same as a real person next to you. I don't want to cheat, and since professional services are not legal in most areas, there is not much to do. My nerves and demeanor have gone way downhill with this part of our relationship missing; even a good guy can only take so much before breaking.

FairyDust said...

I feel completely hopeless as if my life is over.....

Barbara Kivowitz said...

Hi Fairy Dust. Illness takes away so much from us. It is as if life were over -- in some ways, the life we used to have before illness is over. It takes time to construct a new life and to develop new pathways that compensate for at least some of the limitations. Sex can be too often one of the casualties. Some partners find ways of being intimate, emotionally and physically, that are different than before illness. Some don't. What can help is talking with each other -- about what you miss, about what you want, about what might be possible. Talking is one of the only routes I know to get to a different place -- a place that you might not know about from the current perspective. It can feel so hard, vulnerable to talk about such deep feelings and wants -- and some partner fear that talking will cause more harm. It's a tough call. Not talking about what you're experiencing inside creates distance, and superficiality. Talking, and listening, with compassion and heart can be a bridge. I wish you comfort.

Brianna said...

I have been having a hard time finding anyone with a similar experience to mine! It seems that in so many couples struggling with illness, it is the ill partner whos libido falls. I am in the opposite boat. I suffered a brain injury a year and a half ago and my boyfriend took on the role of caregiver. Slowly over the last year he has lost total sexual interest in me whatsoever. We communicate well and often and we both want to fix it, but he cannot seem to find a way to reconcile sexuality and his role as a boyfriend. Even now, that I am more independent, and we are both working at it, nothing seems to be changing. :( I feel unwanted and like maybe we can never get that chemistry back.

Anonymous said...

I am Anonymous from the 9/27 post. My wife is at the point where she knows that we will never have any physical relationship going forward. She is almost ready to allow me to pursue that missing part elsewhere. I wish there was a way to connect with someone willing to fill that void, but discreetly. jht2750

Barbara Kivowitz said...

Hi jht2750. How important that you and yr wife are having this discussion. I'm guessing that with all the websites out there, you will be able to find a suitable person. The only suggestion I have is for you and your wife to discuss what groundrules you each need to make this work, for both of you.

Unknown said...

My husband has cancer and we have been married 8 years I can't say we have not had sex but its not us we are still a young couple in our mid 30s sex was a daily thing. Now its once a mth or so for 30sec he has no energy and he is sick tired and aches...Stage 4 lymphoma.... I am in love him still...always will.. I hold on to everyday. I find it hard because I am so a women in her 30s...I do not masturbate and when this happened I purposefully trashed my toys. I only want my husband there and will wait till his health is restored..

Unknown said...

My wife has severe anxiety and depression. She refuses to take medication and as a result, finds it hard to even make it through the day. Sex is the last thing on her mind. We haven't had it in 11 months. I'm only 25! She doesn't even masturbate or anything often. Maybe twice in the last year. We have an open relationship so I have sex all the time, just not with her. I miss her so much in that way. She feels bad and acknowledges it but it sucks. Because it's not an illness I can physically see, sometimes I feel like she's being dramatic. Any advice is appreciated

Barbara Kivowitz said...

Hi Tyler. I can understand how unhappy it makes you to not be able to have sex with the woman you love. I can't help but wonder why she refuses to take medication. Is she in therapy? It's very real and very awful to live with your experience of life tainted by anxiety and depression. And sometimes having an invisible illness makes it even harder.

An important action is to stay in communication with her about this. She may not be interested in sex, but she is still your partner and talking about what is going on for you, and for her, is an important way to stay connected. Holding a problem together is better than having the problem keep you apart and in silence. A therapist may be helpful with this. And if she isn't open to therapy, you could still consider a therapist or yourself - you are hurting and deserve support and understanding.

Also - I wonder if there is any kind of touching she would consider, maybe enjoy. Non sexual massage? Back rubs? Foot massage? Starting in a non-sexual place may help defuse some of the tension around sex, and may lead to an ability to experience touch as enjoyable. I also wonder if she might be able to offer you some form of touch, non-sexual or sexual, even if she does not enjoy it herself.

Lead with love. No shame or blame. You are both hurting and are deserving of compassion.

janthepooh1 said...

My significant other is my caregiver, but he also has COPD which has reached a point that makes love making impossible. I am chronically ill to the point that I am bedridden most of the time. I have a severe back injury, that I am trying to lose weight to have surgery for. I have fibromyalgia, 3 different kinds of arthritis as well as lupus. I also have stomach and kidney issues. I feel like he is no longer attracted to me. I also feel like that he is angry at me for being ill. It's like he has this underlying anger all of the time. Every so often he just blows up at me. I know that I am not easy to live with. I have been looking at some sites and I'm going to be making some changes. I hope that I can change the way that he feels about me. I hope he still loves though.

Barbara Kivowitz said...

Thanks for sharing your story jamthepooh. You are clearly dealing with illness and its aftermath on many fronts. I have found that honest communication surrounded by compassion can often be a bridge. And sometimes it helps if this is facilitated by a therapist.

It's not unusual for people to be angry at the illness and the toll it takes out of ones life. But it can be hard to admit this, so the anger spills out in derivative ways and lands on other targets. It would not be a surprise if you were both angry, and sad, at the ways illness has distorted your lives. Can you talk about that together, with compassion for each other's experience, and for your own?

In terms of changing how he feels about you - that's a tough one. The only person who can change one's feelings is oneself. I wonder -- Are there ways you can be more loving and more accepting to yourself. Can you show yourself some sympathy and appreciation for how you move through each day? If you can be generous with yourself, that mayspill over abnd affect your partner.

I wish you love and peace.

Charles said...

A couple of years ago my close friend wanted to talk discretely with me. He has an illness that has left him unable to have sex and he asked if I would help out as he is afraid of losing his wife. His wife, a woman of 57, was aware that we talked and what we talked about. She is a shy but very pretty woman and she and I get along great, she would be fine with me fulfilling her needs. Forward a couple weeks and we all three met at a restaurant for dinner and when we left, she and I left together and spent the weekend on an extended date. I made it clear that I did not love her and the arrangement was to provide a certain closeness, she agreed. Over the last two years he has became worse and it is understood that after he is gone I will continue to provide as long as we both want. I have often wondered how many of these "Arangements" exist. I have heard this called Friends with benefits.

CarleyWeisbeck said...

My boyfriend and I were together for only 6 months when he was diagnosed with lymphoma. We are both in our 20's. I was with him every step of the way- every chemo session, staying with him in the hospital every second I wasn't at work- I even took time off to be with him as his family was unsupportive. As a woman with a high Lebido, it was a tough adjustment from having sex almost every day to not at all. Fast forward 6 months later we are lucky he recovered quickly and is in remission. We are still together and get a long great, however we still only have sex probably once-
Three times a month. As we have only been together for about 2 years I thought after he was feeling better this would change- but it never got better. We still aren't connecting physically. I have brought it up several times and he doesn't seem to care. Sometimes I feel like we met so I could help him through his illness but aren't meant to be together. It's not just about the sex, I don't feel physically connected and when it comes down to it- truly loved. Perhaps taken for granted. He really is an amazing person but seems to be unaware of my needs. I need advice.

Barbara Kivowitz said...

Hi Carley. It's not atypical for illness to leave its mark on a relationship. One of the positive aspects of that is that it can illuminate what's special, and what may not be working -- and that can open the door for a deeper, more authentic form of communication. Without that deep communication, each person is left with a set of assumptions that may, or may not, be accurate. You say your bf seems to be unaware of your needs. He may be unaware that he is unaware. Or he may be assuming that the way he is meeting your needs is good enough.

The kind of communication I am talking about can be facilitated by a therapist, especially one who is used to doing couples and family work, and ideally is also familiar with the impact of illness of a relationship.

I also have two books to recommend to you. The first is my book, In Sickness As In Health: helping couples cope with the complexities of illness (link on the home page). I am not self-selling here - it's just that my book addresses the issues couples face when illness enters the picture. The other book is Life Disrupted by Laurie Edwards -- it focuses on people in their 20s and 30s who have had their life disrupted by chronic illness.

I appreciate your reaching out Carley, with such honesty. You are clearly hurting. And It sounds like you two have a lot going for you. And even though you have brought up your needs -- deeper, ongoing communication may open up some doors you both are not aware of yet; or it may help you see that some doors are not going to open, which can help you clarify your possibilities.

I wish you only the best.

fleshyfacepretty said...

I think the couples who make it one of the partners has to be selfless and truly be ok with that

jht2750 said...

Hi, this is jht2750. I have not been on in a while as my wife's illness progressively worsened, and she passed away several weeks ago, only 46 years old. I guess that I am not a caregiver anymore, however I do appreciated the feedback and advice from this blog. I must take my time to grieve, and move forward.
I wish you all well!

Littleangellufc80 said...
This comment has been removed by the author.
Barbara Kivowitz said...

HI Angie. Thanks for sharing our story. You're in a tough situation, made tougher by not knowing what to believe and if you can trust your partner. I guess the main questions for you are -- can you tolerate your current situation? Is tolerable enough for you? Are there compensations that do give you what you need? What else can you try to affect your situation? Have you given up and want out? The only answers are the ones that feel right for you. Consulting with a therapist may help you get clearer.

Anonymous said...

I decided to ask him last night after a quiet evening what the problem was as it's gone on so long same old reasons again..but I asked him if he was watching open..he admitted yes he does so I told him exactly how i felt unloved etc but he can watch porn so has the obvious sexual desires I knew he had but can't show it to the woman he loves and how disrepctful that made me feel..his response was it's all in m head ..i turned over moved to the edge of the bed and put my music on and lay for hours feeling hurt listening to him snoring within 5 minutes..he was obviously concerned for my feelings ..not..i got up this morning to make a drink after he got up and neither of us said a word and I went back to bed now I will get up to go to work after he's gone and be asleep or pretend to be asleep when he gets home..i think its the final nail in the coffin and I feel like i don't even know him anymore but he's so full of b.s it's time to cut him loose or it will continue

Frustrated said...

I am a carer for my terminally ill husband. I in the past year have taken on a lover for sex only. Every 4 or more weeks...husband can't physicallu have sex. Im 46. I have had limited sex when he was diagnosed end of 2014. I crave for affection reciprocal sex and feeling of being wanted and desired. My solution was to hook up with a single man from a dating site who totally gets it.
My husband is a very suspicious man who I am also separated from with an a restraining order in place too ...so i take a big risk doing this. He has an idea but no proof. If i get caught I lose financially as he will pursue a divorce...however im at that point where i am absolutely fed up with my life always having him as the main focus. My entire marriage has been all him and now i dont think I care if i do get caught as I wasn't born to be neglectful of my needs too. As a wife of a domestic abuser as well I fear sometimes the consequences however there does come a time you have to put yourself first! Regardless of whether you are a wife or husband... I feel no guilt. In time if his health ever improves I will make a break. There is more to life than being a carer. At my age I think its make or break. Im going with break. I dont think hanging in there is healthy. Makes you feel non existent. I enjoy the sex very much with my lover. In fact i have grown so close to him its becoming a relationship deeper than sex. He is not abusive and that in itself is a bonus. I count too. In the past my spouse went to brothels whilst i was pregnant he never regretted it. I hung in there ... I will hang in there only if i get my needs met.
Im not a nun. Ive had my share of abuse..police intervention and now he has cancer in advanced stage he chooses to behave. Too late. I say don't be a martyr and go without sex. Shit happens but if you have been a good partner for so long time to get some pleasure. Id feel like a robot without it. It's only once every 4 weeks...not like I'm screwing every day. My GP even recommended it. As long as I was discreet. My spouse being a narcissistic man is very hard to live with he should think himself lucky I stuck around way before cancer. If I hadn't of he would be definitely worse off.
Getting sex outside of marriage is just something i need to do..in every other way I cater to him pay my home loan and look after my kids. I work hard at life. This is what I give myself to keep sane to feel womanly and satisfaction in mutual pleasure. I only feel bad that spouse can not due to cancer but that is his journey. Not mine. We as carers can not take on all the burdens and negative side effects of their cancer it turns us into nothing. We soak it all up and people expect us to dote to smile and say nothing how it's taken our life away too.
I dont like to live in limbo land. I hope i get a fresh start one day. And not be too old to do so. If my marriage was great maybe I not feel this way. If i was ill id definitely give a green light for spouse to seek sex elsewhere as i couldn't care less if my focus was to just stay alive. Everyone is entitled to pleasure and joy and love and happiness.

cinderkeys said...

Hi Unknown,

I hope you're free of your abusive husband as soon as possible. But I don't understand ... If you've got a restraining order against him, how are you still his caregiver?

Anonymous said...

My boyfriend and I are still young, he's 40 and I'm 37. We've been together for 3 years and I love him dearly. I feel like we are battling an unknown and unpredictable enemy. My boyfriend has bad genes, he carries the HLA-B27 gene that is active. This causes a number of issues from Iritis to Arthritis to Balanitis and any number of conditions inbetween. He has gone through countless test and procedures to ensure it's not MS, Reiters, Ankylosing Spondylitis, Bowel disease, Lyme and this list goes on. All thankfully negative however the typical symptoms of these serious illness keep appearing for varying lengths of time and often in multiples. This has certainly put a strain on our sex life to say the least. For about two + years of or relationship we have sex about 1-3 times a month, sometimes nothing at all. I'm sexually frustrated. I feel guilty for wanting sex (although I've not asked in months). Of course his health is a priority and I know he feels badly that he cannot fulfill this need however; how do you cope? Masturbation alone? We are in a committed monogamis relationship and I do not want to open the relationship. Yet I feel like I'm missing out, my sex drive is depleting and I don't want it to. Sex is important to me, how do you honour your commitment, help you partner through their illness and the metal ups & downs and keep your sanity? Normally, my sexual frequency would be daily sometime more frequently, sometimes less. 1-3 times per month, three being exceptional is not working. Help.

Barbara Kivowitz said...

I can hear your sadness and frustration. The question you ask is spot on, and is the question most, if not all, caregivers ask at many points during the illness experience. Illness so quickly can become the third partner in the relationship, and can start making all the big decisions -- like can we travel, can we socialize, can we continue working, and what about sex???

And while we can learn from each other's experiences (just look at all the comments here), there is no rule book, and each couple, each patient and caregiver, ultimately have to sort through their values, their commitment, their priorities, their rules, their needs, their possibilities, etc. for themselves.

Talking together about all the hard stuff is more powerful than you might think. While it is natural to not want to hurt each other's feelings, it is really only by talking, while treating each other with compassion, that you can together figure out how to cope. And many, many couples we interviewed for our book said that if it weren't for the impact of illness they might never have reached the levels of connection, intimacy, and authenticity that they found.

I wish I could give you the answer to your question. But, in truth, there is no "the" answer. You make the answers you create them from the foundations of your relationship. You might decide together that sex with rules outside the primary relationship is worth trying for a period of time. You may decide that's off the table. You may decide to watch sexy movies or read racy books together. You might find some form of touching with permission is pleasurable. The more you talk together, the clearer things become. You may find possibilities that aren't visible right now.

I wish you hope.

Anonymous said...

When we marry it is for better or worse, in health and in sickness. My husband is a veteran and is 12 years older than me. His ability to have Sex declined with his health conditions and we have not had sex for several years. I am 59 and at first I missed it and felt cheated but I love him and I have focused on just being healthy myself and enjoying life with him. After all he went to war and selflessly risked his life for America. Yes I would probably enjoy some sex but I can hug and hold him and be happy because I truly love him.

Anonymous said...

How did this turn out for you? I'm in the EXACT situation now. My husband is 10 years older than me; after dating for 10 years we got married. This year will be 3 years we've been married and we may have had sex that many times in those 3 years. He was diagnosed with prostate cancer within a year of us getting married. We don't have sex of any kind; not even oral-because he just won't. We've discussed this a couple of times and he seems to be uncomfortable with the subject. Ultimately he says; he would rather let me divorce him than to knowingly agree to me taking a lover. I love my husband and enjoy the time we share together. I don't want to leave. I married him for the security he provides and because I do love him. The sex was never a major factor because I thought over time we would explore our sexuality more. Now that there is no sex I feel I have to do something. I'm 42 years old and have not had physical intimacy in almost 3 years!! His solution was to buy me a sex toy(that was smaller than him of course) and make myself content....I don't know what to do. ANY ADVICE???

Barbara Kivowitz said...

Hi Anonymous. This is a complex challenge and touches on so many deeply held personal desires, fears, insecurities, and assumptions. You are both not content -- you because you are missing sexual intimacy with him, and he perhaps partly because he doesn't believe he can offer you what you want. This is not a conversation. It requires calling on your love for each other, the factors that brought you together and that you still treasure, to commit to working together to develop approaches that point to greater satisfaction and connectedness, for both of you. Just committing to have the difficult conversations with each other, with love and authenticity, is an important initial approach. You may find it helpful to work with a therapist who understands the toll illness can take on sexual and emotional intimacy.

Anonymous said...

After reading several comments, it is comforting to know I am not the only person going through this situation. My husband of 10 years is permanently disabled. He was involved in several car accidents and never got the proper treatment, which lead to needing back surgery. There is no physical intimacy in our relationship what-so-ever. When ever I initiated sex, 9 times out of 10 he would turn me down. I have now stopped initiating sex. The last time he had sex with me (no "happy ending" for me) was 8 months ago. I have playfully suggested having sex...nothing. I have out right asked...nothing. I have gone as far as to tell him that my window is only open for a shot period of time each month and he should really take advantage of it...nothing. I feel as if we are drifting apart. When I tell him how I feel, he says I shouldn't feel that way and the conversation is over. I know there is more to a marriage than just sex, but it does play a huge role. I feel alone, unwanted, and unappreciated. I am beginning to question if he truly loves me or is only in love with idea of me. I don't think I can go on like this much longer. I cringe thinking of spending even another year or 5 years so deeply sadden as I am now.

Gary said...

I have Advanced Prostate Cancer. I have had a Cystoprostectomy to remove my bladder and prostate . I have a stoma on my stomach and of course, a bag. My prognosis is 3 1/2 to 5 years . I recently also came down with a throat tumor which was cured with chemo and radiation. It has left me with horrible side effects. I cough up mucas all day long.They have told me I will have this condition the rest of my life. Now they have found spots in one of my lungs. I pray it's not more Cancer. I am 68 and my wife is 60. We've been married 30 years. She is extremely attractive for her age. She's a natural blonde who weighs 118 lbs. She has cared for me through all of this.We have always had a very honest,open, loving relationship. I discovered 4 months ago that she has a boyfriend. I was crushed for awhile. . He is 52 and they met at the gym where she works out.He is a body builder.They both have denied having sex together ( I wrote him a letter and he e-mailed me back). They have been out on short dates after working out and have been kissing and making out in their cars. I do believe they haven't had intercourse yet but I can tell she is very sexually attracted to him and she likes him a lot. After I caught them she seemed very sad that she hadn't seen him in 3 months. I have always allowed her to have male friends so I felt that I should allow her to continue being his friend and working out with him. I know that they will eventually be lovers. I am trying to be reasonable and accept this situation. I am still capable of sex ( they gave me a penile prosthesis) but I am on continuous hormone injections so I know she isn't real excited with me in the bedroom. I know we still love each other. I have thought this over and I think when I get close to death I would rather know who she will probably be with than not know. Am I crazy ? My sister thinks I should Divorce her . I love her too much to Divorce her ! My buddy thinks I'm being very honorable. I have mixed emotions. I just want her to be happy!

Anonymous said...

I know this is pretty old but this could be me writing this in my current relationship. He is on dialysis and waiting on a transplant. I hope things worked out between you two

Barbara Kivowitz said...

Hi Gary. Intimacy is not just about sex. And there can be love, deep love, even when there is no sex. Serious illness complicates the balance. Only you and your wife get to define what love and intimacy look like for you both. No, you are not crazy. You are working to redefine what relationship means when illness becomes the third partner. I support you for doing this hard work, wherever it leads.

Anonymous said...

My wife and I are quite young. I'm 21, and we can't have sex anymore. She can't stop getting UTIs from sex. We've tried literally EVERYTHING. It doesn't matter how much we clean, how many pills she takes beforehand, peeing after. She still can't stop having them. She's running out of options for antibiotics, and if she runs out of options, then she'll get a kidney infection, which could lead to being home up to a machine forever, or death. So basically, no more sex. It's so hard at my age. But I'm a Christian, and I will uphold my beliefs. It's just... Difficult. Idk what to go

Barbara Kivowitz said...

Hi Anonymous. What a hard load to carry at such a young, just getting started, age.

Sex is not just intercourse. And sex is not just physical. I encourage you and your wife to keep talking about everything else you can do that gives you a sense of deep intimacy and sexual connection. And don't fear arousal just because intercourse is not possible. Think about the world of contact that exists and can provide pleasure and closeness without intercourse. Many have said that the brain is the most important sexual organ. Think about the many ways you can use your brains to stimulate each other -- talking, sexy movies and books.

You may have hit one closed door. But there are many more sexual, intimate worlds to explore. I don't minimize the loss of sexual intercourse. But that's not the end of sex.

Anonymous said...


When you are dying let me tell you there is no greater pain than knowing your spouse has already let you go. Compassion is what is required and communication. These comments by the healthy ....keep it secret if you can’t communicate with your partner or you will break them.

Anonymous said...

Finally after 3 years it's all cleared up..he's finally opened up about his feelings..he showed no remorse for his actions..we are together still and finally I have closure..she was just a workmate..I'm still hurt by the deciet..but he's usually a closed book but has finally told me. I am and will always be his one and only ..he will never love anyone like he loves me and so sorry he can't be intimate but it is his crohns and depression..finally been intimate after a 5 year sex less marriage..probably be a long time till rematch .but now he has finally told me it's me and only me and now he's the happiest he's ever been..just wish he'd told me this 3 years ago and I wouldn't have wondered if I was second choice..good news feel like a lead weight has been lifted now I know he really loves ME !!

Anonymous said...

Thank you for this. I’ve really been struggling with this and seeing it tonight just helped give me the resolve I needed to carry on.

Anonymous said...

I have been with my common law husband for almost 8 years. His health started to decline in the past over two years. We haven't had sexual intimacy in that time. We have two beautiful kids together. We are also young, both under 30. Sex toys are my best friend right now. But does satisfy me on the emotional connection during being intamite. I am very lonely... And he doesn't want me to go else where. Which I will be very loyal. I am very depressed. That I can't be with my husband like we use to...

Anonymous said...

My husband and I have been together for 17 years. He became sick in 2014. We have 2 kids. Since he got sick we rarely have sex. We had sex twice in 2017. None so far this year. I am only in my late 30s and it sucks! I love him and want him but he never has the energy or feels well enough for it and then I feel bad for being selfish.

Barbara Kivowitz said...

Hi Anonymous. What you describe is familiar to many couples living with an illness that has a direct effect on the ill partner's sexuality. When intercourse is not desired or possible, sexual intimacy need not end. There are other ways, both physical and verbal, of being intimately connected. And there may be moments when your husband is less tired and moments when he is more tired. When you have a window of him being less tired, perhaps you can begin talking about your love and desire for connection in ways that would feel ok to him too. And know that one conversation may not be enough. More frequent, shorter talks may work better. And infuse your talks with as much love, empathy, and connectedness as possible. You are not bad or selfish for wanting a sexual connection with the person you love. You are a human in a complicated situation. You and your husband have solved many complex problems over 17 years. Use the talents you brought to those problems into this area.

Anonymous said...

Hello, where to begin. My wife is sick. she has been for a long time. the doctors don't know what is wrong, but it's one of a million things. She survived an abusive relationship with her ex. To say that she doesn't like or enjoy sex is an understatement. she is repulsed by it. sex is a chore. she does not flirt at all. Not to say that we don't have sex. we do. but rarely. she has told me to find it elsewhere but I have never taken that step.
I don't know if I am looking for advice or if I am just venting a little. she is an awesome person. A dedicated mother, a dutiful wife, a partner in crime. but I have a high sex. the last couple of times we were intimate, she reached climax long before I did and then became too ill to continue. I was left. . . unsatisfied. but told her I was fine. I don't know what to do I guess.

Anonymous said...

I have been with my husband 16 years and the last 4 he has had a lot of health issues including chronic pain. It has been 8 months since the last time. Over the last couple years they have been spaced further and further apart. I am 37 and he is 41. I have a high sex drive and miss it for sure. I love him though and know it isn't his fault. It is just hard when he doesn't have any energy and is in pain most of the time. It is good to see we are not the only ones facing this though.

Anonymous said...

My husband broke his back and now the attraction is gone. I had gain 30 pounds (tried to quit smoking). He never tells me I am pretty or sexy. But he is quick when we are in a argument to call me fat. I am lost. I love him with all my heart. I know he loves me but he is not attractive to me anymore. I am working out now to try to drop the weight but it is really hard when you are depressed. Don’t know what to do anymore