“Sex and Disability”
My 11 year old tweenager is intelligent, funny, and wise beyond her years. I’m trying hard not to screw her up. She takes more pride in her accomplishments than her looks, and she has refused to buy into much of the “boy-chasing” girl culture that many of her peers participate in. In fact, if I even say the word “sex” in front of her, she turns eight shades of red.
I got “the talk” pretty early, and I was prepared to do that with her. But she didn’t want to have big discussions with me. She wanted a few facts, or to read the age appropriate books on her own, and that was it. If she had a follow up question, she asked, but not always. She knows where babies come from, she knows she can ask me “anything…” I’ve done my job, right?
The thing is, I need to have a different kind of sex talk with my daughter, and I don’t think there is a book that can help me. Both of my children and I have Ehlers-Danlos Syndrome (also known as connective tissue disorder or joint hypermobility). Because of this, we live in chronic pain with chronic risk for injury. It is the crappy-colored glasses with which we see our world. I am a cautionary tale for my children: not being properly diagnosed for 30+ years has left me injured and in bad shape. It has affected just about all of the parts of my Life, including my sex life. Now, I am Mom/PT/Coach for both of my kids, and when it comes to all physical activity, injury prevention is the key to giving them a bright and strong future. So…I tried to imagine how a talk about honoring her health needs during sex would go.
“Hey, honey, you know how you have had TMJ since you were 5 years old, and you can’t chew gum? Well here’s something else you might not want to do…” Blech. My mom and I had an open relationship, but once I hit an age where I participated in sexual activity, the conversation about sex stopped. And it hasn’t started back up. I looked to the Internet for advice, but when I researched “sex and disability” most of the resources I found are for people in wheelchairs or people with developmental disabilities. I’m on my own.
So here are five things I want my children to know about being a sexual person who has chronic medical issues:
1. Choose your partners wisely. Make sure this is a person you can talk to about anything. If you can take your clothes off with them, you should also be able to explain your boundaries and limits as they affect your health needs. Anyone who puts their own needs above yours is not a good partner in bed or in Life.
2. Know your body. If something is uncomfortable, don’t do it! Both people have the right to feel good and safe during a sexual encounter. Asking to change positions doesn’t have to “kill the mood.” With the right game face and body language, you should be able to move away from something that is bothering you and towards something more comfortable, and still have it be sexy.
3. Sexy is subtle. Much of what we see in movies and on TV that is considered “sexy” is exaggerated and crude. Pole dancing and twerking have nothing to do with what really turns people on. Being a smart, strong, and confident person who uses your voice, touch, and words to seduce someone will go a lot further than we tend to give credit for.
4. It’s OK to not want to have sex sometimes. Even in a committed, loving relationship, there are many factors that can affect your desire: physical or mental stress, pain, exhaustion, etc. Normal people struggle with this problem, and you have even more stressors against you. Before you go thinking you have a “libido problem” or a “relationship problem,” keep this in mind. You may very well have those problems, or you may just need a partner who understands that, sometimes, you’re just not able to perform.
5. I trust you. I want my children to trust their judgment going into any sexual situation, and this starts with a mutual understanding that they are trustworthy. If they question themselves, they may not have the courage to stand up to an uncomfortable situation down the road.
I do hope my daughter will be able to discuss these things with me when she is ready. And if she can’t, I’ll make a pamphlet and slip it under her door…
Have I missed anything? What advice would you give?