I finally did it, I submitted the sex & bleeding disorders blog post that I drafted long ago! I had to tone it down quite a bit -- if you know me IRL that you guys know how much more I could have explored this topic in detail -- but I'm very happy with how the post turned out. I edited it quite a bit before I submitted -- and omitted a lot of the "super taboo" content -- but I still felt like my orginal submission sounded a bit...strained. I had to choose my words wisely because I didn't want to make the post too offensive or taboo. Thank goodness for awesome editors. I'm happy to report that I haven't got any negative feedback from this post. ;-)
Anyhoo, here it is. Enjoy!
Last spring I received my sex educator certification from San Francisco Sex Information (SFSI), a nonprofit organization that provides free, confidential, nonjudgmental sex information. SFSI is the only organization of its kind and answers questions from all around the world via switchboard and e-mail.
The organization provides invaluable information and appropriate referrals to people who may be too embarrassed to ask healthcare professionals or cannot locate legitimate information on the almighty Internet. SFSI’s training program covers reproduction, birth control, safer sex practices, HIV, STDs, gender identity and sexual identity. I am proud to be a SFSI-trained sex educator.
For a lot of people, the subject of sex is taboo. I understand why, but I believe our society should make a greater effort to provide comprehensive, nonjudgmental sex information to those who want it. Sure, the public schools provide some sex education, but what we learn about sex, intimacy and relationships also comes from home. More often than not, we come from a home environment that inhibits discussing sex and intimacy. (Well, at least I did.)
I’m not saying all parents should feel obligated to educate their children about sex, but at the very least they should have the resources to direct them to good information, should questions come up.
Sex and Bleeding Disorders
When I was in SFSI’s program, the training staff conducted a session on sex and disability. There was no mention of bleeding disorders, but it got me thinking about how I would probably have to modify my “birds and bees” talk with Niki. If and when Niki decides she wants to talk with me about sex, I want to be prepared. John thought I was nuts—he’s still hoping both of our daughters will become nuns—but I started researching information on sex and bleeding disorders while I was a trainee.
Unfortunately, I quickly learned there is very little information available about sex and bleeding disorders. I was surprised that there was hardly any condition-specific information on sexual issues related to women with bleeding disorders. And, I was even more disappointed to find absolutely no information on sexual intimacy for gay, lesbian and transgendered members of our community!
As a sex educator and member of the bleeding disorders community, I was concerned. As a mother, I was concerned! Not about Niki’s sex life—which, let’s face it, is many, many years away—but it made me wonder how members of our community learned about how their bleeding disorder affects their sexual relationships. Relationships, communication and sexual intimacy are already difficult in a “normal” situation. I imagine that throwing a bleeding disorder into the mix only exacerbates potential issues that could come up. Did they have to learn things the hard way?
Sex Info Should Come From Reputable Sources
Knowledge is power, and I didn’t have that when I was growing up. Everything I learned about sex came from school, peers and, unfortunately, teenage naiveté and experimentation. (It’s a darn good thing that John ended up being a good guy!) I don’t want Niki—or any of my children, for that matter—to be like I was. These days, everyone goes to Google for information, but there is so much sex information on the Internet that is inaccurate or serving some sort of agenda!
It is especially important to me that Niki be as informed as possible about how her condition can affect her sexual intimacy. As awesome as her female hematologist is, I don’t know if Niki will feel comfortable asking her about “embarrassing sex stuff” when that time comes. I’m equipped with enough knowledge to talk with Niki about dealing with menorrhagia when she has her period, but there are so many other things I want her to be prepared for. I read about one woman’s account of the excessive bleeding that occurred on her wedding night. And I hadn’t even thought about that type of bleeding being an issue!
I was pleased to learn that this year’s Annual Meeting was having a session on women with bleeding disorders and intimacy. At that session I heard for the first time that bleeding can be an issue even after first intercourse. If I could split myself in two, I would have attended the men’s intimacy session, too. I’m sure there was a lot I could have learned there as well.
The lack of sex information available to both male and female members of our community worries me. The little information that I have seen seems to be geared toward the mainstream idea that everyone is heterosexual or married. I wish I knew why so little information is available on sex and bleeding disorders. Maybe people are too embarrassed to ask for it. Or perhaps they are asking their doctors about it, but no one has made a collaborative effort to put this information out there for mass consumption.
Medical students don’t receive a great deal of formal instruction on human sexuality unless they specialize in it. So, we cannot rely solely on health professionals to educate our community, either.
I hope I’m not the only HemoParent who feels this way. The fact is, it’s up to our community to realize this issue is important enough to discuss.