Sex is one of the toughest topics for anyone to discuss.
About five years ago, a group of us, some with spinal-cord injury (SCI) and some without, were invited to Washington, D.C., under the auspices of the Consortium for Spinal Cord Medicine. Our task was to identify the list of topics that should be included in the forthcoming clinical practice guideline on sexuality and its companion consumer guide for people with SCI.
From those early days to the final revisions by the editors, the consumer guide on sexuality has evolved into a practical resource that provides answers to most questions people have about sexuality after SCI. From the start, it has been the advisory panel’s view that understanding your body after SCI will improve the ability to give and receive pleasure from sexual activity. Being sexual is an important step in feeling good about yourself again.
We’ve always believed relationship issues were equally as important as medical issues. Being able to trust another person and communicate about sex is vital, especially after the impact of SCI. For most people, talking
about sex will likely increase the chances of entering into asatisfying relationship and avoiding an abusive one. This always helps people to feel closer and bring issues out into the open.
Themes in the Guide
Several themes run through the consumer guide. The first of these is the importance of being creative and letting go of inhibitions. From the experiences of many individuals, the people who seem to enjoy sex the most after injury are those who have the courage and insights to experiment and be resourceful. This takes a certain amount of self-confidence and guts. Trying something new in the bedroom is not that simple for most of us. It’s often easy to be embarrassed about sexual subjects and activities.
In a similar light, trying to recapture the ways we enjoyed sex before an injury can be frustrating and discouraging. The body functions differently after SCI, and sensations are different. As such, the old tricks and techniques don’t always provide the same amount of satisfaction and pleasure they used to. In the sexual arena, many aspects have changed, and trying to do what you did before may just not work.
Previous sexual positions may be difficult now, and what was arousing before the injury may now be less exciting. It’s important to open your mind and imagination to finding new ways of enjoying your body and the entire sexual experience. Setting aside inhibitions can open up a whole new world of sexual pleasure to explore.
As I often say in my quarterly Intimacy Issues column for PN, sex shouldn’t be a struggle, and it shouldn’t be work. This is also the thinking of the consumer guide. If sex is work, a mental shift is definitely needed.
In bed, there should be no such thing as a sexual failure. Every encounter, kiss, touch, and hug has the potential to be fantastic. The consumer guide encourages people to keep sex fun and to focus on the enjoyment and the pleasure of the moment. The mechanics are really not that important. Yet, in spite of this, most of us focus on the mechanics rather than the erotic pleasure. Unfortunately for most people, the lack of an erection or an embarrassing mishap such as spilling urine can overshadow the enjoyment.
Our Sexual Identity
To understand sex fully, we must think of much more than just “having sex.” We must understand sexuality as well. Our sexuality is composed of a broad range of issues involving medical, spiritual, cultural, social, psychological, and relationship concerns. All were deemed important to be included in the guide. Our sexuality is a complex integration of multiple factors that determine how we function as men and women in our society. In other words, our personal sexual makeup is unique for each person.
That uniqueness we all possess is really about our identity as men and women. For this reason, the consumer guide focuses not only on sexual activity but also on the importance of our sexual identity. This seems vital to any expression of sexuality. Being sexual is not just what happens in the bedroom. It’s how we feel about ourselves as men and women. To enjoy the act of sex, we must first feel like sexual beings. That involves feeling like worthwhile human beings who have something to offer another person.
Feeling sexual is not an easy thing after a devastating experience like a spinal-cord injury. First you have the tremendous physical and psychological changes of the injury followed by a society that is still trying to figure out if people with a disability can have and enjoy sex. After injury, it takes time to understand what has happened and to sort things out. It takes even more time to recoup your masculinity or femininity.
Know Your Body
Another theme of the consumer guide is the importance of self-exploration for pleasure and to better understand your body’s response to stimulation. From the outset, we believed the guide should not only focus on sexual activity with a partner, but should also be relevant to people who do not have a partner or who are not in a relationship.
There are many ways to give and receive sexual pleasure whether alone or with another person. For many people, masturbation alone or with a partner is an enjoyable means of sexual satisfaction. In fact, the advisory panel believes self-exploration should be encouraged as a means of sexual education after an injury. It’s healthy, normal, and pleasurable.
As a psychologist, I have learned we all want every sexual encounter to be great. We want to experience those fireworks the first time and every time. Most of us want every sexual encounter to be perfect. Unfortunately, that is not what happens in the real world. It is also not what happens in the bedroom early after SCI.
Great sex after SCI is a goal to work toward. It is achievable but it takes some time, practice, and experience. Each sexual encounter can bring you a little closer to the kind of experience you are looking for. As you learn about your body and how to talk about sex with your partner, the sexual experience will keep improving. Practice may not make it perfect but it will certainly keep making it better. The important thing is to not give up.
A Good Place to Start
The consumer guide may not answer all your questions about sex, but it’s a good place to start. As one of our independent reviewers said, “This is an educational, progressive, thorough, and no-nonsense document. Congratulations on a great resource.”
Hopefully, it will provide consumers with the information they need to make an informed decision regarding their own sexual expression. With accurate information and knowledge, individuals and couples can decide how to reclaim this important aspect of human nature.
Sexuality and Reproductive Health in Adults with Spinal Cord Injury: What You Should Know was published in spring 2011. It’s available by free PDF download from the Paralyzed Veterans of America website, www.pva.org/publications. Printed copies can be obtained free of charge by calling 888-860-7244 (stock #2900-188, shipping and handling apply).