|Read the basics about this subject||
Sexuality and Relationships
It is important to remember that even though many parts of life change after spinal cord injury, when it comes to sexuality and relationships, both able-bodied people and those with a spinal cord injury are concerned with the same things. Relationships can make people feel good and can encourage them to take better care of their bodies, and one of the most important ways to stop pressure ulcers (which means the same thing as "pressure sores" or "bedsores") from developing is to pay attention to your body. The values at the heart of all relationships are alike for everyone: trust, compatibility, caring, companionship, self-confidence, and love. Whether it is a "friendship" relationship, like with a care attendant or a friend, or a family bond, or a sexual relationship with a spouse or partner, these relationship values are important in staying healthy and happy. But relationships can also be difficult at times, and that stress can make it hard for some people to stay healthy.
While a number of studies show that, for people with spinal cord injuries, the areas of their lives they are least satisfied with include their opportunities for jobs, income and dating, these studies also show that a person's level of participation in life is not tied to their level of injury, and that the more a person gets involved, the more they feel satisfaction in life 1. In other words, the same rule about relationships, whether they are dating relationships or friendships, applies for both people with spinal cord injuries and people who are not injured: you have to "put yourself out there" if you want to find someone who will be a good friend, partner or spouse. Not only do you need to get more involved in life, but you also need to keep in mind that, of course, a relationship is not "automatic;" a good relationship requires understanding, compromise (that is, making decisions that are equally agreeable to both partners, even if each person has to give up a little of what they wanted), sharing, honesty, respect and caring. While relationships can sometimes be disappointing when the people we care for don't behave as we would hope, they can also be a source of love, support, warmth and companionship in our lives. No matter what your health status is, working to make a strong relationship can truly enrich your life.
Dealing with a spinal cord injury is certainly not easy, and creates stress for both the person with the injury and those who love them. Stress can definitely cause relationship difficulties and lead to depression for someone with a spinal cord injury. The loss of a close relationship - such as a loved one dying or the break-up of a romantic relationship - can also cause depression, especially since close relationships are an important source of support for someone dealing with a spinal cord injury. Studies show that major depression still affects up to 23-30% of people up to two years after their injury. 2 Depression can become very serious and cause a person to lose confidence and feel less worthy. Depression can also lead to destructive behaviors that people use to escape from their pain, such as drinking or using drugs. All these things can end up making a person distracted, so that it is very difficult to stay healthy and take care of their bodies and their skin.
Loving and caring relationships improve the lives of all people, and can be particularly helpful and encouraging, both emotionally and practically, for those dealing with a major life change like paralysis. In practical matters such as finance and money, relationships with friends and family members are important since these people can offer financial support or assistance in organizing finances to a person who has recently been injured, or they can simply help to lessen the stress and burden that practical issues can create. Relationships are also a source of emotional support in stressful situations that many people face after a spinal cord injury. For instance, our study participant Alley had a caring sister who called her frequently to talk with Alley during hospitalizations that could have been scary to deal with on her own. For Helen, a trusting relationship with her long-term caregiver Marsha made her life less stressful, especially because she could trust Marsha to notice a skin problem. Helen also had a boyfriend who supported and inspired her to get healthy and stop drinking.
Relationships can also motivate a person to gain confidence and take care of their appearance and health. Aaron, who took part in our study, takes a great deal of pride in his appearance, mainly so that he can maintain an active dating life. He reported that his primary motivation to avoid pressure ulcers is because they look and smell extremely unpleasant, which hampers his confidence in dating.
Simply stated, relationships can be a source of fun. One study showed that people who have a spinal cord injury and live with a partner are more social 3; they "put themselves out there" and participate more in life. An example of this is our study participant Chris, who enjoyed having female relationships for the "activity and the physical and the sharing" that they created for him. Another study participant, Dave, was afraid that he would disappoint a woman if he had a relationship with her, or that he would be a burden to her. At first, this fear prevented him from carrying on a relationship outside of his rehab hospital. But eventually he discovered that a relationship with a woman who loved him made him happy, and that encouraged him to heal and take care of himself later when he was in a steady romantic relationship.
However, people with spinal cord injuries must also be aware of possible negative sides of relationships. For example, many people will often put the concerns of loved ones above their own, and as a result will not take care of health problems that can become dangerous. Alley decided to leave the hospital even though she had a serious pressure ulcer, because she wanted to take care of her best friend Lucy, who was dying. But by taking care of Lucy, Alley did not have the time or ability to do what was needed to heal her own pressure ulcer, which may have ultimately led to her death. Similarly, people are sometimes influenced to put their social lives above their health. For instance, Helen developed an ulcer after staying out all night partying with her friends. She may not have been forced to stay out, but she may have felt like staying to spend more time with her friends, even though she had different needs and might have been able to prevent the ulcer if she had gone home earlier. In other words, adults can experience "peer pressure" just as much as teenagers do, and it can be just as hard to resist that pressure and choose to do the right thing for themselves.
Another important thing to watch for in relationships is that the other person is trustworthy and understands the needs of a person with a spinal cord injury. For instance, when Brenda moved in with her boyfriend, she ended up losing her care attendant because her boyfriend wanted to provide her care, and her important female friends stayed away because she didn't have enough time or energy to maintain relationships with both her friends and her boyfriend. They may not have understood that Brenda needed to have all of them in her life, no matter where she was living or how she divided her time. Ken had a tricky situation with his mother, who did not seem to understand or approve of his desire to have a female "phone pal," and even got very angry with him about the relationship. Even though Ken's mom was very good about looking after Ken's physical condition and truly loved him, her belief that a person with a disability should not date or even flirt with women could have affected his self-esteem and his attitude about life. Situations like Ken's and Brenda's could have led to depression and health problems.
Like relationships with friends and family, sexual or romantic relationships can add a lot of enjoyment to life. Sex and romance are natural and important to everyone, and can often make a person feel wanted, loved, confident, attractive, important, and alive. These feelings are especially important for some people (like those with spinal cord injury) who feel less confident about their bodies after being injured, and sometimes sit in a wheelchair all day without a lot of physical human contact. But it is extremely important to keep in mind that even when people with paralysis can't move or feel some parts of their bodies, they have emotions, desires, and romantic and sexual relationships just like anyone else.
However, people with a spinal cord injury must still be aware of their bodies during sexual activity, and should make sure their partners are, too. First and foremost, people with a spinal cord injury must be just as careful about practicing safe sex as those without an injury. They also need to be careful about pressure, shearing, friction and skin injury during sexual activity. Some sexual positions may be better than others because they put less pressure on bony parts of the body. It is wonderful to have an enjoyable, comfortable romantic or sexual experience, but sometimes being in the moment can cause a person to forget normal self-care. For example, Robert would forget to do skin checks when he was with a girl.
People with a spinal cord injury and paralysis must keep in mind the parts of their bodies they cannot feel so they will be aware of any unusual problems. Those with indwelling catheters (that is, a catheter that stays in the bladder and drains urine through a tube in the penis or urethra) should be sure that the tubing is in a good position so that it is not hurting the skin or getting stopped up. People should also be aware of anything they use during sex that could cause skin irritation, like lubricants, condoms, sex aids, and even sheets or bed materials. Most of all, individuals with SCI should be sure to inform their partners about their condition (including skin, bladder, and bowel care) so that a partner can be aware, caring, and supportive.
Overall, being honest, open, confident, and willing to talk about sexual or non-sexual issues are as important in creating strong relationships for people with spinal cord injuries as they are for anyone. In our study, caring relationships were, in general, positive forces in the lives of our participants. Whether it is a family relationship, a friendship, or a sexual or love relationship, having meaningful ties to good people in your life can lead to better physical health, a positive frame of mind, and great motivation to remain free from pressure ulcers!
If you are interested in finding out more on this topic, the Internet offers useful information on sexuality and relationships for people with spinal cord injury and related disabilities, including more technical information on sexual function after injury. There are also many personal stories and questions from people who have started or continued relationships after getting a spinal cord injury. One site, MitchellTepper.com, is maintained by Mitchell Tepper, a leading scholar on disability and sexuality. This website offers articles that address all types of concerns about love, relationships, and sex, along with countless questions that have been sent in by web surfers and answered by Tepper.
The Spinal Cord Injury Information Network, maintained by the University of Alabama at Birmingham, offers all sorts of information on spinal cord injury, including pages on Sexuality for Women with Spinal Cord Injury and Sexual Function for Men with Spinal Cord Injury. New Mobility magazine online has a number of articles where people with a spinal cord injury talk about their personal relationships, including getting married or divorced and becoming a parent; for example, there are articles about people's experiences with sex after disability, First Times, their first dates after their injury, Sex, Wheels and Relationships: First Dates, and stories of Sexual Turning Points from the magazine's readers. Another helpful resource is the Sexuality and Disabilities Bibliography from the Sexuality Information and Education Council of the United States, or SIECUS. The Council provides numerous references for their publications that deal with issues like politics, pain, socialization, function, and adjustment that relate to disability, sexuality, and relationships. (Please note: if you are searching the Internet for articles about sexuality or relationships, a search engine like Google uses "filters" to protect people from accidentally finding obscene or pornographic websites.)