SEXUALITY AND ILLNESS
By Dr. Pega Ren

- Originally published on WebOfCare.com

There we are, living our lives, with all its joys, sorrows, and compromises, maybe feeling pretty smug at our successes, maybe frustrated at our shortcomings. Regardless, we’re familiar with our lives, and we feel at home in them. And then we get our diagnosis.

It changes everything, the diagnosis. Crisis ensues. Meanwhile, the routines and relationships of our pre-diagnosis lives continue on. We furiously prioritize, the items on the ‘Tend To’ list ever growing. We seem never to have enough time, or energy, or interest to get it all done.

Sex and intimacy, our soothers, often drift to the bottom of our priorities. Frequently it is so exhausting just getting through the day that sleep wins over cuddling and/or sex. And we may well not be talking about this shift in the rhythm of our primary relationships. We just realize one day that we’ve become separated from our sexuality, a kind of by-product of our illness. And sex becomes something else we have to work on!

We’re unprepared for this, in so many ways. If we are to solve this dilemma, we must be able to talk about it. Yet many of us are illiterate in the language of sex. How did we get that way?

Our sexual information is gathered and processed in many individual ways. Some of the factors include:

Body Image
How we feel about our bodies affects how we behave with them. Society sets an almost impossible standard for beauty that is inescapable and demoralizing to the vast majority who are not tall, white, wraithlike, ablebodied, and young. When illness or disease changes our already-besieged self image, the result may well be withdrawal and self-loathing.

Add to this our individual feelings about our bodies, often not the most generous or positive, and it is no surprise that our comfort levels plummet and hold us hostage to the belief that we are not desirable as we are. The effect is that we deny ourselves pleasures rightfully ours.

We can learn a lesson from the documentary film Big Dance, which examines a dance troupe of large women, shockingly different from the expected delicate dancers. At first we are uncomfortable, but this soon shifts to
appreciation of the beauty and grace of heavy women moving rhythmically and comfortably. We realize it is our perspective that is skewed, not their bodies. Sometimes we must re-code our world to fit our circumstances. Often it is in the area of body image that we recognize the need for such recoding.

Locus of Control
A locus is an imaginary point. ‘Locus of control’ refers to where we place our sense of personal power. With an internal locus of control we trust our own wisdom and experience over external messages. When we feel we are in control of our lives and our bodies, it is easy to own responsibility. A serious diagnosis threatens that feeling of empowerment. We cannot control illness, and it quickly starts to control us. The medical establishment often lacks sensitivity in this arena, and soon we feel at the mercy of impersonal
strangers. Even our intimate relationships can careen off course as we seesaw between dependence and defiance.

It is important to remember that regardless of what is happening to our bodies, we are in charge of our emotional care. We can embrace that which we can control, and we can learn to prioritize. Selflessness is not appropriate here. Now is the time to defend our personal rights, to keep something for ourselves. Sexuality is one of those rights, and one that can help form an effective vehicle for the journey illness becomes. Sex feels good, and in this time when so little else may, it offers escape from fear and pain and reminds us of the body’s gifts of pleasure and comfort.

Relationship Status
Life crises are confronted differently depending on whether we are partnered or single. Remember that partnered means being in a mutually enriching relationship, not just living in the same place together. A relationship which afforded little support and encouragement before an upheaval often lacks the resiliency to weather the storm. Watching as our partnerships further dissolve leads to guilt and disappointment (on everyone’s part) and adds fear of abandonment to the list of life’s cruelties.

Even those with previously healthy relationships must adjust to the inevitable changes. Roles change, as do needs. The relationship must be continually negotiated. It can be exhausting, and support is critical during this period.

Those who are single must tend carefully the bonds in chosen-family circles. Partnered or single, we need to give our friends opportunities to help us even when that makes us feel particularly vulnerable, and sometimes we must also face inevitable moments of solitude and sometimes loneliness.

Sexual Beliefs and Attitudes
How we feel about sex is learned in a number of ways. The first is through the messages about our bodies and about our sexuality that we receive as children. Many of us learn that our bodies are dirty, ugly, and shameful. Childhood curiosity (playing doctor, masturbating) is often met with ridicule or worse, teaching us that sex is wrong and that we must be silent about it. Society reinforces these lessons. Religious teachings leave us ignorant and frightened about our bodies and our feelings. Finally, most of us have little or no accurate, unbiased sex education.

By the time we are old enough to be interested in sex with another person, we are already so damaged and shame-bound that we dare not ask for accurate information. We bumble forward, groping furtively and anxiously, hoping we are ‘doing it right’.

When confronted by illness, our sexual relations are affected. Silence and denial are sure to damage our interactions. Still, how do we talk about changing sexual needs if we cannot talk about sex at all?

Let’s look at what language we do use. There’s childhood slang, the ‘dirty words’ we blurt and giggle about, like peepee and diddle and poo. Then there’s scientific terminology, the words we use when we go to the doctor’s office, like testicle and vagina and intercourse. Don’t forget street lingo: irreverent, sometimes garish terms like screw and cock and pussy. All of them are just words, devoid of any power of their own, but the arena of sex is so charged that we react even to the language we use to express it. And when we cannot utter the words, we communicate with the code of body language, as in flirtatious behavior. There are limitations to using code, of course, especially the opportunities for misunderstanding and misinterpretation. When we make assumptions about the clarity of our message and our intent without using verbal communication to support our body language, misunderstanding is likely.

Now, there’s nothing wrong with using touch as language. In fact, we use it to convey messages from “I’m sorry you hurt” to “I love you” to “I want to have sex with you”. Touch is a marvelous communicator, but can be ineffective alone. Verbal communication targets separate and different receptors than does touch, and we need them both.

How can we make good sexual communication happen?

Of course, we need a safe place to have these conversations, and, sadly, our intimate relationships do not always afford us safety. If our relationships are unfulfilling before we become sick, magic and wishing won’t cure them now any better than before. We wholeheartedly want a safe emotional harbor when we are hurt, and in some cases we have to fix the long-standing problems first, before we can approach accommodating our new disabilities. This may well be an appropriate time to seek help in therapy, to repair and restore the depth and intimacy in our partnerships that will in turn foster a deepening sexual bond.

Our sexuality is as much a part of us as is our temperament or sense of humor. We are all individual, and we each need all aspects of our personalities functioning to keep us feeling whole and happy. Sex is no
exception, and a good sexual relationship can help us weather frightening storms. As in all forms of communication, we have a much better chance of getting what we want if we ask for it. We can learn to speak directly about sex if we realize that stating our preferences does not necessarily indicate
dissatisfaction with what has gone before. It helps when we tell our lover what DOES work, encouraging exploration and experimentation and humor. Laughter is a remedy for doubt. We are none of us the world’s greatest lover, and we all get better with practice.

When we are new to open sexual communication, we must start slowly, taking little risks, like sharing a bubble bath or a fantasy, and checking for our own and our partner’s reactions. If the sky doesn’t fall, we can risk a little more by trying something else that intrigues us.

If even these initial ventures seem too intimate for our frozen relationships, it may signal a time to seek couple’s therapy. When we are in crisis, everything seems to change. This is as good a time as any (really, it is) to address our important connections and strengthen them as much as possible. We might as well change the things that matter most to us, and work to change them for the better.

Change will be evident for us as our bodies, too, adjust to new limits and limitations. Not only does illness affect us, but also the drugs and therapies we hope will cure us.

We need to keep current with our bodies, and the most reliable way to know our bodies sexually is to masturbate. Sharing information learned from masturbation with our partners enables them to be more effective lovers, a situation in which everyone wins.

As our bodies change, we can monitor what still works, and what works differently, and adjust our lovemaking behaviors to accommodate those changes. Often, we must redefine sex. Americans have examined that question thoroughly for the past few years and found no clear answer. In the end, we define sex very personally–if we define what we’re doing as sex, it’s sex. If it feels like sex, it’s sex. The goal is to feel good. It’s that simple. Sometimes our bodies’ changes shame and hurt us. We don’t want to look at
the altered parts, certainly not to touch them. We don’t even want to acknowledge them. But the healing requires that we re-embrace our bodies, redrawing our definitions to fit the current picture.

Remember, too, that NOTHING is without sexual allure to someone. The Internet abounds with sites for devotees of dozens of ‘peculiarities’. There are people who think our medical equipment, or our missing body part, or our scars are alluring and exciting. Let’s join those folks. Let’s teach ourselves to want what we have. We can teach our partners, too. Remember that attraction is culturally defined. We can bring our locus of control inside and refuse to listen to society’s ‘you’re ugly’ messages. We can like ourselves just as we are. It is infectious and enhancing.

How do we do this? We start small, exploring where pleasure still lies. We stand before a mirror, naked, and look everywhere, even at the wounded parts. We can view those parts as we would a crying child or an injured animal. We can grieve for them, and then we can comfort and embrace them. When we feel better about how we look (one peek in the mirror doesn’t do it....it takes time and practice), we can begin to accept our bodies with our fingers, touching everywhere. This is an opportunity to acknowledge our bodies, perhaps for the first time. If we can learn to love our stricken places, surely we can also embrace our sexual places. We can give our bodies the chance to experience greater pleasure than we’ve known before. We feel
better when we can find a silver lining in this dark cloud we call illness. Rightly so!

Sickness forces us to confront the inevitability of death, while sex sings of life. Sometimes feeling sexual when we are sick feels like a contradiction, a self- betrayal. But we can be sick and sexual simultaneously. There’s more than one right answer to how life works, and whenever we can grab a chance to feel good instead of bad, it is a victory. There is enough suffering in illness that we needn’t add more by resisting opportunities to experience pleasure and arousal.

Now we’ve figured out how to fix our relationships, our self-images, and our attitudes, let’s talk about how illness affects sex...the mechanics, if you will.

When we are sick and in treatment, we are so often exhausted that we feel dreadful, and we often must cope with side effects of drugs in addition to the havoc of our disease(s). For these reasons, and because illness alters interpersonal as well as personal relations, sex may well look very different during this period. Perhaps all we will be able to do is to float in a hot bath (better yet a hot tub), supported and caressed by our lover. If touch itself is overwhelming, maybe we would enjoy massaging our partner’s feet, or hands, or shoulders, a treat for them as well. If we feel tired but randy, we can indulge in mutual masturbation, snuggled together under the covers and taking our time. We could even share a sexual fantasy, or watch an erotic film together. They say it’s an ill wind that doesn’t blow somebody some good, and the restrictions imposed by sickness, awful as they are, offer us a chance to explore our sexuality, and our intimate relations, with new flexibility and inventiveness.

We often hurtle through foreplay, focused on the destination of orgasm. Redefining sex can shift the focus to enjoyment of the journey. When we slow it all down, we get to savor the delights of each of our senses. Lovemaking becomes sensual, tender, affirming. Sex becomes fun, curious, exciting.

Just as illness affects sex, so sex affects illness, and it’s good news. The physiological benefits for women include increased vaginal lubrication (robbed by some medications), and everybody benefits from increased
muscle tension during arousal and its subsequent release following orgasm. Sex can be a cardiovascular workout that we can pace as necessary. The tactile stimulation of gentle caressing eases our bodies into relaxation. We even sleep more deeply following orgasm. Psychologically, partnered sex provides us moments of closeness, away from fear and pain, while self-loving serves as a reminder of life in the body.

Regardless of how illness affects us and our loved ones, it will affect our sexuality. Silence and denial are poor solutions. Crisis affords us the courage (some say desperation) to risk change. Remember,

CHANGE STRESSES
STRESS DISTRESSES
DISTRESS DISTORTS

When our loved one feels awful and scared and hurt and helpless, they may not recognize or remark upon our many stellar qualities. We may feel unappreciated, overwhelmed, and exhausted. Neither of us may be at our best...or sexiest. This is a good time to remember open heartedness, devotion, and forgiveness. Our long term goal is restored health and vitality, though sometimes it may feel like just getting through the night is
monumental. This is hard stuff, and suffering is not always optional. Still, sexuality is such a dynamic, compelling and life-enhancing force that it behooves us to make good use of it. Sex affords us opportunities to be familiar with our bodies and our mates. It quickens the heart as well as the pulse. It provides us with moments of ecstasy when much looks colorless and cold. We can spend our time pushing away our sexuality, or we can embrace it. Let’s make it a celebration!

© 2000. Pega Ren, Ed.D. All Rights Reserved.