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Unscrewing Ourselves

Having a Chronic Illness Doesn't Mean Giving Up Sex

We spoke to Kirsten Schultz, the woman behind the #ChronicSex movement giving people with chronic illnesses and disabilities the information they need to build healthy sex lives.

Nicole Haase

In "Unscrewing Ourselves," we explore the state of sex ed today by highlighting the individuals and ideas changing our sexual health for the better. Read more from this series here .

Kirsten Schultz was diagnosed with systemic juvenile arthritis in 1993. Since then, she's been diagnosed with fibromyalgia, psoriasis, patellofemoral arthralgia in both knees, anemia, scoliosis, asthma, gluten intolerance, depression, anxiety, and post-traumatic stress disorder, along with suspected dairy intolerance and Raynaud's phenomenon.

As the diagnoses stacked up, self-care became a challenge for Schultz. Between health maintenance, doctors' visits, and living her life to the best of her ability, her mental well-being and interpersonal relationships suffered. Life with a chronic illness is a constant minefield of misdiagnoses, skeptical reactions, and attempts to explain the unexplainable to the people in your life, Schultz described. Doctors could give her exercises for when arthritis made her knees stiff and painful, but they didn't exactly share what sex positions would take the pressure off those same joints. When she went looking for more information or a community of people in similar situations, she found none. That's when #ChronicSex was born.

Schultz spent hours each week advertising and fostering the weekly Twitter chat at a grassroots level. Soon, Schultz's practice went from talking to the Twitter void to running a website that walks readers through pelvic floor therapy, offers sex toy reviews, and more. Its tagline is "because sexuality doesn't depend on ability."

Now, Schultz is at the center of an ongoing discussion which includes everything from how to talk to your doctor about sensitive subjects to how to use aids to build a fully realized sex life. Broadly spoke to Schultz about how our culture treats sex and illness, and why these views need to evolve.

This interview has been condensed and lightly edited for clarity.

Kirsten Schultz. Photo by Tasha Falconer

BROADLY: What is #ChronicSex?
KIRSTEN SCHULTZ: For me, it's really about having a place to talk about not just sex, but everything outside the realm of the doctor's office for people who have chronic illnesses or disabilities. There are just so many unanswered questions, and none of us seemed to know where to get the answers. So many people have multiple chronic illnesses where they have to go see a variety of specialists, so there are barriers to asking questions. Which doctor do I ask? Doctors only have 15-20 minutes to talk to patients. The time restraints and multitude of doctors make it really difficult.

Sex is obviously a big part of it, but [it's also] about self-worth and how illness or disability might affect how we see ourselves and treat ourselves. [It's about] quality of life markers that just aren't really gauged at a doctor's office or are difficult to keep up with when you go to the doctor. It's about our relationships with ourselves and others. Pushing the conversation to some of these traditionally uncomfortable spaces is the only way that we make progress and grow. So if we're not talking about people with disabilities or chronic illnesses having sex, then we're doing a really big disservice to not only the people in those communities, but to people in general.

This idea grew from your own personal posts about sex and your relationship. How do you get comfortable talking about your own sex life in a public way?
The first few posts where I was talking about myself were hard. But they were the posts people kept reading and commenting on years later. They clearly resonated with people. I kept checking with [my partner] to make sure he was OK. Someone I look up to recently told me 'You being vulnerable gives people a beacon of permission to share those things and really open up those conversations.' It's not easy, but I think it helps other people be open and honest. They feel free to ask questions they might not ask in other contexts.

Schultz at the 2016 Women in Pain Conference

For readers who aren't living with a chronic illness or disability, what are some of the obstacles you have to overcome to have fulfilling sex?
Since there are a variety of illnesses and disabilities, there are infinite ways these can affect sex. People with injuries or conditions that affect their limbs may have trouble getting into certain positions. For many, looking at positions that can ease that difficulty is embarrassing or difficult, let alone learning about positional aids like thigh harnesses for toys or cushions like Liberator sells. Many people struggle with vulvar or vaginal pain and don't know who to talk to about it. I am going through the process right now of undergoing pelvic floor therapy for vaginal pain, both because I need it and because I know sharing my experience with it may help others. There are so many other things to overcome before we even get to sex—communicating about our health issues, our wants and needs, our pain levels is a big one. Overcoming discrimination—specifically ableism—can make it hard to even date, especially when people may need to rely on apps or websites because their health [and] a lack of accessibility doesn't let them go out to bars, etc.

Are there aids or toys out there that you've found to be more helpful than others?
What might work for one person may not work for another. That said, there are a lot of places that sell unsafe sex toys, and educating people who are especially vulnerable to damage from these toys is a passion of mine. Likewise, not all lubes are created equal. Everything that I review is body-safe and non-toxic. For me, I know that utilizing a lubricant that has CBD oil in it helps reduce my vaginal pain. Another thing that I love and that has gotten a lot of positive feedback in the disability community is the Doxy massager. I was lucky enough to snag one from them this summer at a conference but haven't had a chance to review it yet. One of the reasons I love it, though, is that it can do double duty, so to speak. It's a great sex toy but can also be incredibly helpful for working out knots in my back and neck. There are a million toys out there, but I haven't found one that hasn't been helpful for at least massage or as a teaching tool.

Why are these conversations so important, not just for members of your community, but for the population as a whole?
Just because somebody has a disability or a chronic illness, it doesn't mean they are not a sexual being. The CDC in 2012 estimated one of every two adult Americans has some sort of chronic health condition—at least one. So I think this is the start of a very important conversation that's just going to become more relevant as we have people aging or living longer with conditions that may have killed them [years ago]. [It's dealing with] all the ramifications of how we're improving medicine.

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Why do you think #ChronicSex resonates so well with people?
One of the trickiest things about having a chronic illness is that it's hard to explain to other people. There's a lot of judgement from people who don't know that you're dealing with a chronic illness or don't care. It can be very isolating, and it can be incredibly detrimental to your emotional and physical health. From a sex education standpoint, medical students only get on average three to 10 hours of education on sex and sexuality. Most of that time is spent talking about STDs or fertility. They don't talk about how, if someone has osteoarthritis, they can use different positions or different aids to help them have a fulfilling sex life. They don't talk about how the difficulty in communicating a chronic illness or disability to a partner can lead to more incidences of aggression between partners or even a higher rate of divorce after the onset of an illness. There's a lot that goes into living with an illness. It's all about uncovering everything that encompasses chronic illness.

What comes next for you and #ChronicSex?
My goal was to help maybe one person and go from there, and now that the community is so big, I don't know what comes next. There are so many things I could do. I'm starting to do academic research because there isn't a lot of research that's inclusive on chronic pain and chronic illness and disability, especially around sex and sexuality. I've been doing conferences the past two summers and designing some workshops around how we live our best lives with illness, including living our best sex life and making sure that we demand accessibility—whether that's at work or in the bedroom. It's really kind of taken over my life.