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SCI Forum Reports

Dating and Relationships after SCI

February 14, 2006

Dating is hard enough in the best of times; after a spinal cord injury, insecurities about body image and doubts about one's desirability as a romantic partner can become a major concern. At our annual forum on dating and relationships-which fell on Valentine's Day this year-several people with SCI shared their personal experiences of coming to grips with their changed selves and making their way in the world of dating and mating after injury.

When Brad * became paralyzed from the chest down after a motorcycle accident in 1991, he went in an instant from being "close to 6 foot 4 and 215 lbs.to 4 feet 5 inches( in a wheelchair)." After leaving the hospital, he worried about what people saw when they looked at him and what assumptions they might be making about him-did they see him, or did they see a disabled person? "I didn't know how to react to myself, let alone how to react to somebody who was reacting to me," he remembered. Getting comfortable with himself was an important step in being able to feel confident about dating.

Brad's wife of seven years, Amy, had never met anybody in a wheelchair before him. "On our first date I knew instantly she was the one I wanted to be with," he recalled. As questions came up about what the future together might look like, Brad found that communicating openly about all the fears and questions they both had was the only way to make it work. "We talked about everything; there was no taboo," he said. This helped them get through the early awkward times as well as later when they decided to have children (they now have twin babies, a boy and a girl, from in vitro fertilization ).

"If you're afraid of something, talk about it," he advised. "People are afraid of what they don't know."

Amy admitted she didn't know anything about paralysis when she met Brad. "One thing he did for me that was really helpful was give me some materials to read that talked about sex after SCI, the actual bladder and bowel stuff and how that works," she said. Reading it helped her come to terms with it on her own, and gave her specific questions to ask him later.

David has had tetraplegia (quadriplegia) for 10 years. He has dated several women since his injury, and in the last year has been in a romantic relationship with Janna. He agreed that honest and open communication has been a key element in the success of this relationship. "I finally found a good woman to fall in love with and cut through the bull****," he quipped.

Janna and David met when she started renting his downstairs apartment. "I liked him right away," she recalled. "We started talking more and more, really getting to know each other. I've never met anyone so fabulous. I've never felt so cared for."

When asked about their physical relationship, David answered, "With SCI you don't have to worry about performance anxiety. It changed the dynamics wonderfully. It's actually pretty liberating in a lot of ways." Turning to Janna, he asked, "What do you think?

"I couldn't agree more," she said. "And again, honesty and communication take a lot of the angst out." Humor has also helped to overcome awkwardness, as it does in any relationship. "We joked a lot and had a lot of sexual innuendo and energy before we even got to that point (of a physical relationship)."

Tricia sustained a T4-5 injury in a car accident 13 years ago, at age 17. "After my injury, the first thing I had to deal with was my body image," she remembered. "I came out of the hospital almost bald (an allergic reaction to medication). I had lost a bunch of weight, had a big bloated stomach from surgery, and I was paralyzed. I thought-who is going to want me?"

When she went back to high school after rehab, "everything was different. I couldn't drive for a year, I couldn't go out to the same places my friends were going. I was so scared to date and explain everything, all the bowel and bladder stuff-I hadn't gotten that under control yet. How was I supposed to date someone? It was really hard."

Most people don't get through life without experiencing a bad date or rejection at some point, and people with SCI are no different, except they can be left wondering-was it me or the disability? Sometimes you'll never know for sure, but Tricia painfully recalled the guy she dated in college who broke things off abruptly, admitting he couldn't handle dating someone in a wheelchair.

The flip side of this was men who were interested in her because of the disability. "In my early 20s, going to bars with friends, guys approached me out of curiosity, guys who just wanted to know what it would be like to be with a girl in a wheelchair. They'd come up with weird pick-up lines, like, 'Hey, so how are we going to get busy on that thing (the wheelchair)?'"

Over the years Tricia has noticed a pattern in the kinds of people she's been in relationships with. They were either 1) "carefree types who just don't care" about whether she had a disability; 2) people who already knew someone in a wheelchair; or 3) people in the health care field. "I've dated a couple of people with SCI, and that's nice because you're already comfortable with the situation."

Her worst date ever was at the movies with a guy she really liked. She hadn't had "the talk" with him yet-the one about the more private details of her disability-because she didn't want to "scare him off. I wanted him to get used to me first," she recalled. "And then-oops!-I had a bowel accident. It was very awkward and embarrassing. But you have to deal with that; it's the reality of my life, unfortunately."

Like anyone else, Tricia has had "good relationships and bad relationships." Several years ago, after encouragement from friends with disabilities who had met their lifelong mates through the Internet, Tricia decided to try online dating. Fast-forward to the present: she and her partner are celebrating their six-year anniversary. "I was living in Florida and got a response from an occupational therapist from Seattle. We talked and emailed, and after a 1 ½ years of a long-distance relationship, I uprooted my life and moved to Seattle. We bought a house together last year." Her advice: keep trying.

Ted had been dating the woman who is now his fiancée for seven months when he crashed his ATV almost two years ago and broke his neck. One of his earliest worries was, "If I'm in a wheelchair, how can she really love me?" But the fact that she drove 400 miles to Seattle from Idaho every weekend for 14 weeks while he was in rehab was powerful evidence of her devotion. "I really felt loved," he said. "It helped me get through my rehab." Ted had been through two failed marriages and many relationships before meeting his fiancée and, echoing the words of the other panelists, has learned that good communication is vital to a healthy relationship.

Maturity is another factor. Tricia found that college-age men were more reluctant than older men to date someone who was "different" or perceived as having "problems," like SCI. "Older men were more mature, more patient, past the partying stage. They dated me for who I was as a person."

Sometimes friends or relatives try to discourage a person from getting involved with someone who has an SCI. A man in the audience reported that the parents of a young woman he was dating after injury pressured her to break up with him. "Her parents still played a large role in her life," he said. "They were afraid she would become my nurse and I would leech off her my whole life. That was the first time I had experienced prejudice. It took me a while to understand that it wasn't about me, but about her family's issues."

On the other hand, a person with SCI can be the victim of his or her own stereotypes. This same man pushed away a loving relationship soon after his injury because he felt he was only "half a person" and unworthy of being loved. "It was too soon," he said. "I hadn't come to terms with my changed image." Knowing and accepting oneself is an important first step toward relating openly and honestly to others.

Ted said he has to regularly check his feelings of inadequacy about not being able to do the things he used to do. For example, "I hate it when she has to get out of the car and fill the gas tank. I feel like people are giving me dirty looks. If anything were to smash our relationship it would be my insecurities. And the thing that keeps those at bay is communication."

"Everybody, whether in a wheelchair or not, has to deal with insecurities," noted Brad. "In some ways the insecurities are more visible (for people with disabilities). For the most part, dating (after injury) is still dating. You date a few people before you find the right one. The wheelchair didn't have that much to do with whether a relationship lasted or not; it was all about personalities."

"You need to ask yourself: what do you want? What makes you happy? What do you search for in a relationship? And just go get it." he continued. "It all starts inside yourself. It's that simple."

For Ted, the SCI forced him to confront what was really important in life. He remembered mourning the fact that he'd never be able to ride a motorcycle again, something he loved doing. "That really depressed me. So I thought really hard about what are the most important things to me and decided there are two things: the ability to laugh, and the ability to love. It's the best thing you've got. Nothing can take that away from you."

Resources

* Names have been changed to protect privacy.