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Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.


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  Home> Publications > QUEST >Vol 4 No 1 January 1997
ROCKY ROAD TO ROMANCE
by Carol Sowell

If you're between 15 and 25, thoughts of love, sex and relationships are no doubt dancing in your head. Having a neuromuscular disease certainly doesn't make a young person any less interested in romance.

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Puberty -- development of the physical characteristics that make you an adult man or woman -- isn't generally affected by neuromuscular disease, says Dr. Judith Topilow, codirector of the MDA clinic at Monmouth Medical Center in Long Branch, N.J. Puberty usually begins for both boys and girls between 11 and 14, and continues through the teen years. The actions of certain hormones cause bodily changes you can see and also affect your sexual and emotional feelings. These changes occur in adolescents with neuromuscular diseases in essentially the same way and at the same age as they do in other teens, Topilow, a pediatrician, says.

Puberty awakens your interest in romantic love. Virtually all teens and young adults dream of finding the perfect partner, who will be the ideal helper, friend and lover for a lifetime. It's also normal to find you're attracted to many potential mates, to experience heartbreak and rejection, and to fantasize about a Brad Pitt or a Liv Tyler knocking on your door. And all young adults -- even those who look like Brad or Liv -- have doubts about whether their appearance and personality are "good enough" to attract the loved ones of their dreams.

What you do with all these feelings is something you have to figure out for yourself, and it's one of the most important issues you'll deal with as a young adult. There's no right age to begin dating; you'll know when you're emotionally ready. Some teens rush into love, sex or marriage for the wrong reasons -- they're afraid they'll only get one chance, they want to be popular, they think sex is all they have to offer, they want to upset their parents. These are all immature reasons that can lead to later emotional problems.

On the other hand, many young people -- with and without disabilities -- postpone dating until well into their 20s. Some just don't feel confident enough. Others, realizing that relationships demand time and energy, make education and career their top priorities, leaving romance until these issues are settled.

For example, Alex Fisher, 17, of Los Angeles, recently began attending school dances. He expects to get more involved in dating after he finishes high school this spring.

Abby Albrecht, 21, a senior at the University of Southern California who has spinal muscular atrophy, finds her studies keep her busy enough. "I don't want to spend my life dealing with guys," she says. "I'd rather pass my classes. Silly me."

There's really only one right reason to start, and stay in, a relationship -- because you've found someone you like, respect, trust and enjoy who feels the same way about you. Most people with neuromuscular disorders have love relationships at some time in their lives and many marry.


WHAT ABOUT THE WHEELCHAIR?

However, a physical disability often brings its own special obstacles in dating. Some people may have told you that romantic love isn't an option for someone with a disability. The facts prove that isn't true, but you'll have to work hard to overcome negative messages and learn to see yourself as appealing.

Michael Luber, a psychotherapist in Milwaukee, says, "Parents don't have to say, 'Well, don't expect to have a girlfriend, don't expect to get married.' But by not saying anything and not talking about it, it's the same thing as saying, 'This part of life isn't open to you.' The young person can assume, 'Well, I'm not to have those things; I'm not desirable.'"

People who say you shouldn't expect to date may be trying to shelter you from disappointment, but more likely they're causing unnecessary pain and self-doubt. Asking someone out or showing you like someone is always risky, and you'll be better prepared if you believe you deserve love.

Angela Wrigglesworth, 19, a student at Texas A&M University in College Station, says, "Both my mom and dad definitely feel I will find someone. I'm sure they're planning a great big wedding. But there's also no pressure there.

"My mom and dad just want me to be happy," says Angela, who uses a motorized wheelchair and has spinal muscular atrophy. "I just want to meet someone and fall in love and get married, which is everyone's dream, or most people's. I think everyone faces a challenge in their life and this [SMA] is just mine."

Another dating obstacle for teens with disabilities is transportation. Though you may not yet be able to drive, and your friends' vehicles can't accommodate your power wheelchair, there are solutions. You can let your parents drive you, let a friend drive your adapted van or socialize at your house. These may not be ideal options but they're better than staying at home just because you lack transportation.

Plan ahead to be sure the places you go are accessible to wheelchairs. If you know which friends' homes or public places are accessible, you can avoid an embarrassing scene.


WHY DO THEY THINK I'M DIFFERENT?

No doubt, the most difficult challenge you'll face in your social life is dealing with the attitudes of other people. As a child, it may have been pretty easy to be friends with able-bodied classmates, but the young adult years sometimes present a whole new set of barriers.

Luber, 33, who has limb-girdle muscular dystrophy, sees social and romantic acceptance as one of the hardest challenges for teens with disabilities. "Usually at that level you don't look much past the physical," he says of teen-age attitudes in general. "So much of acceptance depends at that age on the physical. You can certainly be friends and be in peer groups, but when it comes to dating, that's a whole other situation."

Elizabeth Denehie, 23, of Houston, has dated several young men in college. She considers herself attractive, with blond hair, blue eyes and a trim figure. "I've had guys tell me I'm beautiful," she says.

But when it comes to love and commitment, more than one guy has told Elizabeth, "You're such a great person and someone's going to see past that [her disability]. I just can't do it."

After a breakup, one boyfriend told her, "I was scared back then. I didn't know what other people would think of me. Now that I'm older I realize that I shouldn't have wondered what other people would think. I should have gone with what I was feeling."

Some people are concerned about friends' reactions to their dating someone with a disability. In other cases, they fear their parents' response.

Although Forrest Green, 18, of Bronx, N.Y., gets more positive than negative responses when he asks girls out, he feels that he's sometimes turned down because he has Duchenne muscular dystrophy. "You can sense that's what it is but they'll tell you something different," he says.

Elizabeth, who has facioscapulohumeral muscular dystrophy, has run into several odd attitudes about disabilities. Some people assume that a guy who takes out a girl with a wheelchair is "just being nice to her. They're not really dating, it's like he's taking this poor girl out and making her feel special," she has heard.

Because they don't know much about disabilities, some young people worry that they'll have to help a date in the bathroom, or that the disability will limit sexual activity. Teens may find it hard to come right out and say what they fear or to ask what limitations exist.

Angela thinks some people believe "people in wheelchairs should only date other people in wheelchairs."

You may even get a sexual offer out of pity. Elizabeth says, "They're like, 'Oh, you're in a wheelchair. You never get anyone to pay attention to you. Why don't you come and mess around with me? I'll show you attention.' I say, 'No, thank you. I respect myself a little bit more than that.'"


WHAT DO I DO NOW?

If you want to date, but no one's asking or saying yes, don't assume your disability is to blame. There are several factors that keep people out of the dating game.

Kay Harris Kriegsman of Bethesda, Md., a psychologist and director of the annual Handicapped's Only a Word Conference for teens with disabilities, says, "I think that teens' with disabilities issues are primarily the same as the issues for all teens. Sometimes they differ in degree and complexity of dealing with them. Relationships and dating are two of the number-one issues for all teens."

First among these issues is isolation. To learn how to be comfortable in a relationship, you need to spend a lot of time with people your own age. Get involved in school activities or other interest areas. As you get older, your circle of friends will naturally expand to include friends of both sexes. Go to the movies, the mall, the games and other places with kids you like in a group, and enjoy yourself.

MDA National Youth Chairperson Mandy Van Benthuysen, 16, of San Diego, has found a couple of boyfriends this way. "It starts out in a group, like that's how you first meet and talk to each other. And once you start to click with each other or whatever, then you go out with your friends and you also go out by yourselves."

For Abby, hanging out with groups of male and female friends makes college life more fun than high school, and it isn't necessary to find a boyfriend. "High school was the pits, because it's mostly based on who has a car. It wasn't much fun. Now you hang out in college, and it's a lot easier to get around," Abby says.

Kriegsman, author of "Taking Charge: Teenagers Talk About Life & Physical Disabilities," and herself a polio survivor, believes that young adults should "build common interests and friendships before you move into a 'relationship.'" Getting to know someone through activities and friendship is the best way to build a comfortable, trusting relationship.

Getting acquainted casually also helps people get used to your disability. "Luckily, I've had boyfriends who, I've seen them and they've seen me, and they knew things about me already," says Mandy, who uses a wheelchair part-time because of limb-girdle muscular dystrophy.

A second issue is your appearance. Physical attraction is a part of romance, even if it's ultimately not the most important thing. And a disability doesn't keep you from being attractive.

Luber says some teens with disabilities assume they're unappealing and don't take care with their grooming. That only makes things worse.

He advises that you "take the time and do what you can to make yourself attractive. That means paying attention to your hair, putting together your clothes. For girls, it means doing your makeup and hair and earrings. For boys, part of building a good self-image is to say, 'Well, I am in a wheelchair, and I may not be built like a football player. But I'm going to shave and comb my hair and put on a clean shirt and make myself look respectable.'"


WHAT DO I COMMUNICATE?

The third area to examine -- more important than looks -- is how you feel about yourself. If you like yourself, if you believe you're nice-looking, fun to be around, and have a good personality, other people tend to pick up on your attitude and feel the same way about you.

Angela feels she's attractive and well-liked. "I've definitely found my place at school and I can walk around the campus with 43,000 students and say hi to a lot of people," she says. "At least at my school, I don't really feel that beauty increases your value or your popularity. No doubt it helps, but at the same time there's a lot of weirdo-looking people who have a whole lot of friends."

Luber advises, "If you have a more positive image of yourself and you take the risks, there may be a chance of developing a relationship. If you don't do anything, if you have a poor self-image and you don't pursue it, then it's very rare."

Forrest's current girlfriend "started hitting on me" at a cheerleading event. Both juniors at the same high school, she's a cheerleader and he manages the cheerleading squad, a strategy he used to meet girls.

He's not surprised that girls like him. "I'm cute. I'm pretty intelligent and pretty sure of myself. It's my personality," he says.

You can improve your self-image by building on the strengths you have. Take pride in your skills, grades and accomplishments.

Ryan McDonald, 17, of Indianapolis, believes he's the kind of guy girls like. "I'm a pretty nice guy, a pretty caring guy. I feel I'm pretty smart. Some people think I can be a little arrogant. I think that comes from overasserting myself when I was younger to make sure I never got lost in the crowd," he says.

Ryan, who has SMA, believes his most important asset is his sense of humor, which he uses to make others like him. "If I can make fun of my disability, then people are going to be more comfortable. I'm the kind of guy that makes everything funny. I think that's just a way to show that you're not afraid," he says.

You can also look at how you present yourself to others. What messages are you unconsciously sending about yourself? You can try to imagine how others see you, or ask a friend, an older teen or an adult you trust for some honest feedback. You may decide to make some changes.

Kriegsman suggests looking at whether you place too much emphasis on yourself. Caring about how others feel is a skill you'll need in a relationship. Do you need to learn to show more interest in others? Try volunteering, which not only provides a way to meet people but also teaches sensitivity.

Maybe you do just the opposite, avoiding attention because it makes you feel shy or uncomfortable. You can work on this quality by thinking ahead of things to say or talk about, and responding graciously when people show an interest in you.

Do you know what to do and say in various social situations? Some kids with disabilities who've been isolated in special schools or at home may need to learn social skills.

As you mature, you'll get a better perspective on the role your disability plays in your relationships. When Ryan was in seventh grade, he asked a girl out and she turned him down because she already had a boyfriend.

"When this girl said no, even though I knew what the reason was, I didn't totally believe it, and I questioned whether or not my wheelchair had anything to do with it," he says. "That was really the first time I ever looked at myself as being really disabled. It was more devastating than it normally would have been. I blew it out of proportion."


WHAT ELSE CAN I TRY?

OK. Let's say you've examined your situation honestly. You have a good self-image, you've got lots of friends, and you look great. Your friends and advisers agree that you're very appealing and don't need to change a thing. The only thing that seems to be keeping romance away is your disability.

You may be right. The fact is that, especially in the teens, others simply may be unable to see past your disability. That isn't an easy reality to deal with, and you may have to make an effort to help people feel comfortable with the things that make you different. Remember, your disability is old hat to you but may be quite new to the cute guy or girl you like.

First, show you're comfortable with your disability, and that you're many things besides someone using a wheelchair.

Mandy knows that new people she meets may have ideas about "a typical person in a wheelchair who's not capable of doing things." Her approach is to "just be myself, or say something funny to show that I can talk or keep up with the conversation, or ask questions."

Luber advises talking about your disabilities just enough to show you're comfortable. He cites research showing that, "When someone in a wheelchair disclosed why they're in a wheelchair and talked about their disability unprompted, out of the blue, it made people feel more anxious. But when people brought it up in a context that made sense, it made people much more relaxed."

Try focusing your conversation on whatever's going on, a movie or song or team you like, or interests you have in common. If the other person seems anxious or is looking at your chair, respond to these cues. You could say, "I notice you're looking at my wheels. I've had this wheelchair for three years. It gets me around," Luber suggests.

You might ask, "Would you like to know why I'm in a wheelchair?," and give a simple explanation: "I've got muscular dystrophy and I can't walk. Other than that, I'm just a regular guy." If you're hanging out with a group of friends and discussing the opposite sex, you could say something like, "In case you're wondering, this wheelchair doesn't keep me from noticing how cute he is."

You'll also need to educate about yourself. When Elizabeth goes out with someone, she informs him, "I just can't stand up, that's it. But everything else is normal. I'm just two feet shorter than you." She also points out that she's completely independent and doesn't need any physical assistance.

Elizabeth's FSH dystrophy presents another obstacle. "My disease doesn't allow me to smile. That automatically turns a lot of people away. After I get to know someone, I'll let them know, 'I can't smile. It's not that I hate you or that I'm a snob. I just can't smile.'"

If you'd like to, you might even lead a program or make a school report about a topic related to disability. You could talk about the Paralympics or explain the Americans with Disabilities Act [ADA]. A factual presentation can break the ice. Since you've brought up the topic of disability, friends will feel it's OK to ask you more about it.

Third, communicate about sex.

If you're uncomfortable talking about sex -- welcome to the human race! You certainly don't have to talk about it in any way that makes you uneasy. But when you're ready, be straightforward.

Some people assume that people who use wheelchairs aren't sexual. Remember that your friends -- as well as their parents, your teachers and other adults -- may get their "information" about disability from movies and news stories about people with spinal cord injuries, in which sexual dysfunction sometimes occurs. They have no way of knowing that in neuromuscular diseases, sensory nerves are usually intact, giving people completely normal sexual abilities.

If someone implies or jokes that you "can't have sex," you might simply say, "You're wrong. Everything works just fine." (Later stories in Quest will examine marriage, sexuality and pregnancy as affected by neuromuscular diseases.)

Finally, take the initiative. Everyone fears rejection, and asking someone for a date puts you at risk of being turned down. You're probably not much more nervous about it than anyone else. If you really like someone, it's time to take a chance.

Forrest advises: "Don't be afraid to go out and get what you want. And don't be discouraged by the answer no. There's always someone out there who's right for you."


NOW WHAT?

If you're sure you've done all you can to express your interest in a potential mate and to make yourself appealing, here's one more piece of advice: Be patient. Your classmates and peers may just not be grown-up enough to see beyond the superficial.

Almost everyone eventually learns that beauty, youth and physical perfection only last for a while. Adults know that loyalty, trust, communication, patience and a sense of humor are much more important in a relationship. Some people reach that level of maturity in college, some many years later.

It can be frustrating to see your peers pairing off and to wonder if you'll ever have the same experience. You'll just have to give them time to learn what you know about yourself.

Whatever your time-table, never settle for anything less than someone who treats you with all the respect and love you deserve.


WHERE CAN I FIND OUT MORE?

If you have questions about sexuality, puberty and related topics, ask your primary-care physician or your MDA clinic doctor about your specific case. Dr. Topilow acknowledges that pediatricians and neurologists who treat your neuromuscular disease may fail to ask questions that are routine in medical examinations of most teens. These include: Do you smoke, drink, use drugs or have intercourse?

If you have questions, most physicians are happy to answer them or refer you to someone who can. Ask your MDA office or support group to arrange a special program on relationships and neuromuscular diseases. You may also want to see an adolescent medicine specialist or counselor, or consult one of these books:

Taking Charge: Teenagers Talk About Life & Physical Disabilities, by Kay Harris Kriegsman, Elinor L. Zaslow and Jennifer D'Zmura-Rechsteiner, 1992, Woodbine House. Teens give their views on emotions, dating, self-image, relating to other people, independence and planning the future.
Enabling Romance: A Guide to Love, Sex and Relationships for the Disabled, by Ken Kroll and Erica Levy Klein, 1995, Woodbine House. One of the authors of this guidebook for adults has a neuromuscular disorder. The book covers overcoming stereotypes, breaking the ice and building self-esteem, as well as sexual intimacy for those with particular disabilities.

Coping With Being Physically Challenged, by Linda Lee Ratto, 1991, The Rosen Publishing Group. This is part of a series for teens, with a chapter on "Peers, Adolescent Changes, and Dating."

 

 
     
     
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