I know that now, with three kids, “Sex Interrupted” has a totally different meaning (laughing)
So, really, those are the kinds of things I talk to patients about. More setting your timing, setting your mood, taking your medications at a specific time, those kinds of things are what I discuss. And I think Iris really is the one that can hone in on the pleasure side of intimacy.
.. When we were trying to go through this whole thing, with the IVF and all these different things, especially being a guy… And you’re typically expected, like, you know, hey, it shouldn’t be a big deal. It should, you know, pretty much always be in the mood. But that wasn’t the case. Whether it was from medication or body image and seeing my body change and that sort of thing. How did it come about, writing this book?
Iris Zink, NP: So, a patient that I saw that had ankylosing spondylitis asked me at the end of the visit: She said she couldn’t spread her legs open wide enough to have intercourse with her husband and what did I think about that? And I had a pause, and she said, “Oh, I’ve embarrassed you.” And I said, “You haven’t embarrassed me, I have no idea what the answer to that question is.” I said, “Can I have a couple weeks?” And she was super sweet about it. And I called my local librarian and I said, “Get me everything you can find on arthritis and intimacy.”
I thought to myself, if she’s having this problem, how many more of my patients are having this problem? I would have these lectures around town, and no one would come. And so, I thought, OK, what is going wrong? And I think, you know, Vicky’s very smart about positioning. And I have found that my patients figured that out from the get-go. They figured out how to manipulate the positions, so that they could have intercourse.
What my patients were really lacking was communication. Like they did not have the ability to communicate with their partner. There was a huge role shift when someone’s diagnosed with an autoimmune disease or a chronic illness in the household. Someone goes from doing a lot of the household duties to not. The partner wants to help. There’s, “I don’t wanna hurt him or her by asking them to do something that used to be a normal activity.” There’s this whole problem that happens psychologically, so I really delved into that. And when patients didn’t show up, I thought, OK, let’s talk to health care providers.
Iris Zink, NP: I know at Johns Hopkins, they have it on their intake form: Are you having any sexual dysfunction?
So, I started talking to groups of nurses about talking about intimacy. And wow, nurses are shy about this. And nurses would come up to me after my lecture and say, “You know, if I only had a book of how to talk to the patients about this, I would feel a lot more comfortable.” And I’d look at ’em and I’d say, “Susan, I know you have six kids, you know how to have sex.” (laughing) But they wanted a book.
Rebecca Gillett: Where do you think most people are having the most difficulty? What factor do you see in talking to patients is the most difficult part? Is it the mechanics? Or is it the intimacy?
Pete Scalia: I mean, Iris, first of all, the title of the book, “Sex Interrupted: Igniting Intimacy While Living With Illness or Disability”
So, first of all, it’s making a safe space for that. Because a lot of places don’t even ask. Like your gynecologist wants to know about your birth control and your pregnancy needs, but they don’t wanna know about your romance or your intimacy issues. No one’s asking these questions. It’s about opening that door to communication because they just don’t know how to talk to their partner about the body changes and the pain that they’re experiencing and the fatigue.