Monday, February 1, 2016

Illness and Sex

A reader recently posted this as a comment to my article on What Do You Do When Illness Makes Sex Impossible.  I am reposting it here because I think his situation is a common one, that often stays hidden because it is fraught with emotions and complications.  I'm also posting my response as a comment.  I encourage you to share your stories and approaches to the challenge of sex and illness.

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 radiation, and a hysterectomy. 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...

Here is my reply to this caregiver:

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.

Unknown said...

Funny that I saw this today. I am in my 40s and until 2 years ago, was very active...running marathons, traveling, dancing, chronic pain has turned my life and my boyfriend of 4 years upside down. I'm not the same person, and he doesn't have the same partner and I know this is why we aren't married. I am trying to make my mind wrap around being without him because it just doesn't seem fair to put him through this. Neither of us know what to do, will be ok because it has to be.

Barbara Kivowitz said...

Hi Unknown. The experience you describe is one that is shared by so many. It sounds like there is a great deal of caring in your relationship. As I wrote in my comment above, couples have found ways to still live and love, even when pain and illness become the third partner in your relationship.

I don't mean to be at all self promoting - but we wrote our book (In Sickness As In Health: Helping Couples Cope with the Complexities of Illness) to help people such as yourself. We spoke with many couples and partners and experts to learn from them how they managed to cope with the ways illness inserts itself into our relationships, our communication, our roles, and our hopes.

Illness and pain change things. But they don't need to end the relationship. As my husband and I learned over the years of dealing with my pain condition - communication is the key. Talking together changes perspective and that changes possibilities.

Anonymous said...

I read the previous thread and followed it here. I really appreciate you talking about this subject. I am a 33-year-old man who has been married for six years (together a total of 10 years). While my wife and I were dating, she very much wanted sex, but I opted for relgious abstinence (although I was not a virgin). Since being married, my wife mostly does not desire sex, as is often painful for her. It is possible there are medical complications (she's gone to the doctor about fibroids, but they have yet to find anything), but she is often not in the mood for touch. She has been on birth control for years and it seems to affect her desire. We sleep in a king bed, separated by pillows. We cuddle on the couch sometimes, but she often feels smothered if I invade her personal space for too long.

In the past two years, we've had sex about four times. I am usually the only active participant and we often have to stop because it's painful for her. I've stopped asking for sex because I am tired of getting shutdown. My self esteem and mental health are in a terrible state. Distance and other circustances isolate me from family and church, so I often feel like I have no one to talk to about this. I love my wife and in all areas beside sex, I would say we are doing well. I would never cheat on her, but I have to rely on pornography for sexual gratification. She is aware that I masturbate and doesn't have an issue with porn, but past attempts at mutual masturbation have been awkward at best. My wife just doesn't derive the same joy from sex that I do.

My wife wants to have children together. I am hopeful that our sex life will improve once she is off birth control and she receives the medical attention that only pregnant women are provided. I am scared, however, that once we have kids, we'll never have sex again. I love my wife's humor, intelligence and I am still sexually attracted to her. I don't want to destroy what we've worked so hard to build together, but I also don't want to live in a sexless marriage for another 10 years. I am worried that things will only get worse once children are in the picture, if we don't address things now.

Any advice on how to approach this would be greatly appreciated.

Barbara Kivowitz said...

Thank you for sharing your story. I believe it's more common than one might think. Pain, illness, trauma too quickly become the third (unwanted) partner in the relationship. Sexual intimacy can one of the casualties. It sounds like it's not clear in your situation if your wife is uninterested in sex, or if her pain condition limits her interest. Either way, the result is a blow to your state of being. And I wouldn't be surprised if she is loaded with her own difficult feelings about the situation.

There are no one size fits all answers here. Each couple has to figure out their own path. Some couples separate; others stay together and either live with love but limited sexual intimacy, or decide (together) to give permission for the well partner to seek sex outside of the relationship (I am not advising secrecy here - this choice needs consideration and agreements between both partners).

The only suggestion I have is to keep talking. And to seek help from a therapist if the conversations start to be too hard to have and you find yourselves avoiding the topic.

Reed&Enjoy said...

Try talking very openly with her understand how difficult that can be because when you initiate intimacy but do not control the outcome it makes you feel vulnerable and as if you have no control over anything. But try to find the inspiration to be very honest and blunt. It sounds as if you have a wonderful relationship.I can relate to what you said about "I love my wife in every way..." it is important that you take care with yourself as well and if you need intimacy and sex make your wife aware of how you feel. It is not wrong that you have needs. Perhaps you can enlighten her in a way...Maybe she is unaware of just how strongly you feel. Keep this in mind. You love her and touch and sexual intimacy is another tie in our relationship.

Anonymous said...

Married, in love and sex-starved: This has been my situation for 15 years.
Her disability has destroyed any appetite, or even tolerance, for the active, loving, satisfying sex life we enjoyed for so long.
I worry about the resentment, anger and pain I feel. She says an outside relationship for me is alright but I don't want to make a bad situation worse. Yet sex-starved marriages frequently die a slow, painful death.
In an ideal world, I would find a compatible woman in a similar situation with whom I could enjoy the kind of sex and acceptance I'm missing.
We've never strayed from our marriage vows in 40 years but this reality is untenable.

Are there any support groups, voices of experience or helpful counselors out there?

Barbara Kivowitz said...

You are not alone in your situation.

It speaks a lot about your relationship that your partner understands your needs and is giving you her permission to seek a sexual partner; and that you care about your partner and don't want to do harm. I do think it would be helpful to keep talking and explore together (maybe with a therapist who works will illness and relationships) what you each need and what'k ok and not ok. Talking is not acting. It's envisioning possibilities together, and problem solving together. And at times, the loneliness that goes with the lack of sexual intimacy is partly due to not communicating deeply about what's really going on. This kind of talking can lead to a greater sense of connection, and to potential actions that you both agree with -- which could be new forms of sexual intimacy (outside of intercourse) with each other, or other sexual options for you.

There is one chapter in our book (IN SICKNESS AS IN HEALTH: HELPING COUPLES COPE WITH THE COMPLEXITIES OF ILLNESS) about a man who was the main caregiver for his wife who had an increasingly debilitating form of MS. He also wrestled with the issue of how to find sexual intimacy. Also - have a look at -- particularly the Caregiver Connect section.