Few topics have as much potential to make parents uncomfortable as talking to their kids about sex. However, “When you have a bleeding disorder, there are a lot of things that could occur when you become sexually active that you may not otherwise know about until they happen,” says Tiffany Intal-de Leon, a certified sex educator in San Francisco and the mother of two children with bleeding disorders. “That could mean unexpected bleeding, which could be a source of embarrassment, or other health issues.”
Thus, for the physical and emotional health of their children, it’s important for parents to initiate conversations with their kids regarding sex and intimacy and be sure to provide them with accurate information, or access to resources where kids can ask questions and get the facts they need. And for parents of teens with bleeding disorders, it’s especially crucial to pass on this information before kids are sexually active.
How to approach the subject
Parents often are unsure about when to start talking to their children about sex. But in truth, most have probably been discussing it with them in age-appropriate ways since they were very young. “Using the correct terminology for body parts helps keep the dialogue open as a child matures,” says Ruth Ann Zisser, WHNP-BC, MS, a reproductive health nurse practitioner in Denver, Colorado. “And then with what kids see on the internet and even on TV now, the subject is open all the time,” she says. “I am sometimes amazed at subjects dealt with on TV sitcoms. But if families watch them together, then the adults and their children have all heard the same information, so there should be less embarrassment to bring up subjects like masturbation, periods, childbirth, birth control, hormones and sexuality.”
When teens or preteens start asking more pointed questions about sex and intimacy, “it’s the right time to talk about it,” Intal-de Leon says. Even if they don’t ask questions, if their school is providing education about puberty or sex, she recommends supplementing at home with information specific to bleeding disorders. The goal is to approach the topic in a positive way while emphasizing safety and prevention. Judging and shaming kids is a surefire way to turn them away. Rest assured, kids are going to pick up information about sex from their friends, the internet, or from other unverified and untrustworthy sources. Only if the lines of communication are open between parents and kids can adults debunk myths and counteract wrong information.
If ongoing discussion about intimacy issues is just too uncomfortable for you or your teen or preteen, encourage him or her to talk to their hematology nurse, hematologist or another healthcare provider. “Take a realistic approach,” Intal-de Leon says. “Even if they don’t want to talk to you about these details, let them know that you’re available. But you want them to feel comfortable talking to their doctors if that’s easier. The bottom line is that you want them to have the information they need to be safe and feel secure.”
What teens need to know
Sexual activity includes risks for all teenagers, regardless of whether they have a bleeding disorder (sexually transmitted infections [STIs] and unplanned pregnancy are just two obvious concerns). But there are additional potential complications for those with bleeding disorders. Similar to exercise, sex can be a strenuous activity, so there is a possibility of bruising as well as the chance of developing a joint or muscle bleed from sex. “Activities like masturbation can also cause a bleed in people who have a severe bleeding disorder or who are poorly treated,” says Zisser. Because mucosal tissues in general can be prone to bleeding, it’s important to specify that oral, vaginal and anal sex could all lead to bleeding, says Intal-de Leon. At the same time, she stresses that parents shouldn’t portray potential bleeding in a way that discourages teens or scares them away from sexual activity altogether. “Feeling shame may cause a person to shut down and create a disconnect in receiving the information they need to be prepared,” Intal-de Leon says. “People with bleeding disorders could have bleeding anywhere, so it’s important to know that upfront and have a plan for managing it,” she says.
For girls, specifically, heavy and long-lasting periods can make sex a physically and emotionally difficult subject. Girls may believe that because of their bleeding they can’t have sex or they may fear being physically intimate. And, if they take birth control pills to help regulate and reduce heavy menstrual bleeding, they may have worries about being stigmatized by peers or misunderstood by romantic partners. “Some girls think that they can never get pregnant or have a family, which is incorrect,” Zisser says.
Zisser recommends parents work to overcome their own anxieties about discussing sex and intimacy issues with their teens and focus on educating their kids. “For all teens, correct physiological and biological information will give them tools to combine with their knowledge of their bleeding disorder to make good decisions and to ask questions,” she says. By encouraging young women and men to speak openly about their worries regarding sex, parents have the power to help ease concerns and correct misconceptions.
In addition to information about the physical effects of sex, young people with bleeding disorders also need to understand the “psychosocial issue of relationship intimacy,” as Zisser puts it. Disclosure is one such concern. Zisser says, “Not telling an intimate partner that you have a bleeding disorder starts a relationship off with secrets that can’t be kept forever and can be a block to further emotional intimacy.” Whether or not to disclose is not cut and dried, however, and can be a complicated decision. Still, Zisser suggests parents stress that, ideally, if a teen is close enough to someone to be considering physical intimacy, they should be close enough to tell that person about their bleeding disorder.
Lessons for a lifetime
All parents want their children to make wise decisions about their own health and safety. That basic parental desire should be the driving force behind discussions about sexuality and bleeding disorders.
And for parents, talking to their kids about sex and intimacy isn’t a “one and done” situation, either. “The Talk” about sex has evolved into multiple conversations on a range of topics, from how to know when you’re ready for sex to safe sex and gender and sexuality. Just as stressing the importance of healthy habits such as eating well and exercising can have a lifelong impact on kids’ physical health, the same is true for sexual health—communicating accurate information, and letting kids know you’re open to their questions and concerns, can help set them on the path to healthy intimate relationships through their teens and on into adulthood.
Videos Spark Frank Discussions
In June, NHF launched three new animated short videos on sex, intimacy and bleeding disorders—one targeted to women, one to men, and one to young adults and teens. The videos, featured on NHF’s YouTube page, address some common questions and issues and are great conversation starters on a topic many find it difficult to discuss openly. While any medical concerns should always be addressed with your hematologist and the team at your HTC, these videos highlight some of the ways a bleeding disorder can impact sex and what to watch out for—topics like when and how to disclose to a romantic partner and how to tell if you’re having a bleed during sex. As the narrator says in the video for men, “the purpose of having sex is to enjoy it,” and these new videos are one more way to get some valuable information and insights on how to do just that while staying safe and healthy.
Watch the videos at youtube.com/NHFvideo