A spinal-cord injury doesn’t necessarily end loving, being loved, intimacy, or parenting.
According to the National Spinal Cord Injury Statistical Center (NSCISC), approximately 11,000 new cases of spinal-cord injury (SCI) occur each year. A little more than half (51.8%) of people are single at the time of injury. When compared to individuals of comparable age and gender in the general population, research shows that:
– The divorce rate is higher than normal during the first several years after SCI among people who are married at the time of their injury1
– The number of single (never married or divorced) people is higher several years after their injury
– Most people with SCI remain single 15 years after injury
– Fewer single individuals with SCI will actually marry2
In my experience counseling individuals with SCI, I work with patients on many issues. My role with those who are newly injured is primarily to facilitate learning of daily management issues such as bowel, bladder, and skin care. Managing self-care issues is an essential first step in rebuilding a life after injury.
My role as a counselor later becomes one of facilitating adjustment for patients who have difficulty adjusting to life after injury. For many patients, their thoughts, feelings, and behaviors often negatively affect relationships.
Facing Injury Together
Individuals who are in a relationship at the time of injury will often question whether or not they can maintain their relationship. In reality, it is almost impossible to assure the success of any relationship. Lasting ones depend on a number of factors such as personal likes and dislikes, common interests, communication, and long-term compatibility. Considering that about half of all marriages end in divorce, it is obvious relationships are not easy, whether or not a person has SCI. Although there are many relationship issues, I want to offer a series of counselor (C) and patient (P) exchanges that are common examples of how unrealistic personal views negatively affect relationships.
In this first example, I discuss sexual activity with a 32-year-old male who has a T9 level of injury from a car accident ten months earlier.
C: Are you talking about sex?
P: Yes! I can’t do it like I use to do it. What am I suppose to do—lie there? I’m sure my wife will like that.
C: So you two have talked about this?
P: I don’t like talking about it. We haven’t “done it” since my injury.
C: This is a common concern after injury, but open communication with your wife is important. This requires patience and trust on behalf of you both. Did you and your wife communicate openly prior to your spinal-cord injury?
P: I think so.
C: Then you can probably rely on communication to resolve this issue. That said, you may have some physical limitations with sexual activity. However, that doesn’t mean you have to simply lie there, and it doesn’t mean you and your wife cannot enjoy each other. Are you willing to talk to your wife and work together to solve problems?
C: Well, it is up to you as to whether or not you do anything. But you and your wife can work together and solve problems if you focus on common interests. You might explore different position possibilities and adjust your sexual activities. There may be many concerns about sexual activity along with unexpected problems or setbacks, so it may take time to resolve issues.
P: It doesn’t matter, though.
C: It doesn’t matter?
P: I can’t even have sex right now if I wanted to.
C: Are you saying that you’ve tried to get an erection but can’t?
C: I see it’s difficult for you to talk about this, but it’s an important issue. Have you read anything on this issue for men with SCI?
P: Not really, but I’ve seen those pill commercials.
C: I’ll give you some information to read. I can say it’s a common problem. There’s nothing shameful about talking to a doctor about treatment options just like you would any other medical problem. Chances are you will be able to get a satisfactory erection with medication. If not with medications, there are other options.
P: That’s good to know.
Most couples face obstacles early after injury. For most adults, pre-injury life is routine, familiar, and comfortable. People usually have established views of what they consider “normal” sexual activity, and they generally have defined notions of their relationship.
In most cases, pre- and post-injury routines are very different. Like many other aspects of life post-injury, changes in views and established routines are usually necessary in adapting to life after injury.
The basis for a healthy relationship centers on open communication, learning the facts about life after injury, and a willingness to adjust views in many areas.
Meeting Potential Partners
Many people with SCI have a negative body image. Self-image is important because thoughts and feelings associated with it greatly influence relationships, especially when it comes to meeting potential partners. People who have a negative self-image after injury will likely presume others will find them unattractive and probably undesirable. Although it is natural for newly injured individuals to take time to become comfortable with their bodies, people who maintain a negative self-image for long after injury will likely have difficulty with relationships.
In this session example, a 24-year-old man with a C5 level of injury years earlier is challenged on his presumption that he is unattractive.
P: Nobody’s gonna find me attractive! Nobody’s gonna be interested in me! Nobody’s gonna want me!
C: How did you come to these conclusions?
P: That’s how life is. I’ve never seen a woman with a guy in a wheelchair.
C: So, you think no one will find you attractive and will not want to be with you simply because you’re in a wheelchair?
P: That’s right! Why would they?
C: That’s a bold statement considering thousands of people are in wheelchairs. Out of all those people, let’s say there are ten men with the same injury as yours, same movement, feeling, and everything. OK?
C: How many out of ten would you realistically say are married?
P: Not many!
C: Can you give me a realistic number?
P: I’ll say…maybe two or three at the most.
C: Good. I think three out of ten is a number close to reality, so I’ll concede seven out of ten are single. Now, how many men out of that remaining seven would you guess have girlfriends?
P: At most, one.
C: I’ll accept that. You’re saying that it’s believable that 40% of men who are like you and use a wheelchair are currently in a relationship. Is that correct?
C: If these men are in relationships, some women must find these men attractive. Do you agree?
P: But there’s not that many women who think it.
C: You may be right. Some women may not find men in wheelchairs attractive, and some women are not going to find you attractive for other reasons. But before we start exploring those areas, is it reasonable to assume that men in relationships believe their partners find them attractive?
C: So, if all ten men are in the same position as you, same injury, movement, feeling, and same everything. What’s one major difference between you and the men who are in a relationship?
P: I see what you’re saying.
C: What am I saying?
P: They think different.
C: Exactly. Have you been attracted to someone recently but not asked her out because you thought she would find you unattractive because you’re in a wheelchair?
P: I guess so.
C: If you think no one will find you attractive, then you are probably not going to put yourself in a position to meet women you might normally ask on a date. If you change your way of thinking, do you have a better chance of meeting someone?
As the above session continued, the patient became interested in how to establish first contact with potential partners. He soon acknowledged there is no real difference between before and after injury.
People who put themselves in positions to meet new people have a greater opportunity for meeting potential partners. If a person asks someone on a date, the answer will be “yes” or “no.” The patient also accepted that, in the event that the answer is “no,” there are many potential reasons for a person to decline a date.
A Question of Parenting
In another session, I met with a 28-year-old female with a C7 level of injury after a car accident two years ago. She had not considered being in a relationship because she questioned her abilities to have children and be a parent.
C: What is it you want to do with your life?
P: I’m not sure what I can do.
C: OK. What did you want to do before your injury?
P: I suppose one thing is (starting to cry) have another baby. (Long pause) I was pregnant a few years ago and lost my baby. (Pause) Now I’m not going to be able to do that. (Crying)
C: (Long pause) There’s really nothing anyone can say to ease the pain of losing a child. However, you say you are unable to have another child. Are you saying you cannot have children or should not have children because of your injury?
P: What’s the difference?
C: Some women have medical issues that keep them from naturally becoming pregnant. Even if they cannot become pregnant, it doesn’t necessarily mean they can’t have children. They often adopt. On the other hand, many women with spinal-cord injury think they cannot have children after injury. Many women also think they should not have children because of their injury. Do you have a menstrual cycle?
C: Although there are complications that need to be prevented or managed before and during pregnancy and delivery, you can probably conceive and deliver a baby naturally. Spinal injury does not directly affect your long-term reproductive function, and it is the same for most women with SCI.
P: Well…I would like to have kids.
As the above session continued into talk about the possibility of being a parent, the patient began noticing a pattern. She found she continued to presume she could not do things. After her beliefs were challenged with facts, she discovered she could, in fact, manage parenting issues. She learned she may not be able to do things exactly like she envisioned, but she learned there are ways to manage issues.
The facts are simple. You are attractive and desirable and have the opportunity to meet people, fall in love, and marry.
You are a sexual being and have sexual desires. You can enjoy sexual activity and have children.
It is normal to have doubts, concerns, and questions about relationship-related issues after SCI. Not everyone with SCI needs counseling, but it may be helpful in adjusting to life after SCI when unrealistic views continue to cause problems in your relationships.
This article appears as “Are Relationships What You Think?” on the Spinal Cord Injury Information Network Web site www.spinalcord.uab.edu. Visit this site for a plethora of information about SCI and life after injury.
1 DeVivo MJ, Richards JS, Stover SL, Go BK. Spinal cord injury: rehabilitation adds life to years. West J Med 1991;154:602-6.
2 Brown JS, Giesy B. Marital status of persons with spinal cord injury. Soc Sci Med 1986;23:313-22.