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?

37 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 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.

FollowYourHeart 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.

Unknown 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.

jht2750 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..

Tyler Larsen 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.