#ChronicSex: Creating a Safe Place to Talk about Sex and Chronic Illness

Patient Expert

Do you wish your doctor would talk about how your chronic illness affects your sex life? Do you struggle with how you see yourself and the world after getting sick? Do you wish you could talk to someone about sex, sexuality, relationships, and chronic illness?

Then #ChronicSex is for you! It is a movement, a Facebook group, and a Twitter chat in which people with chronic illness talk about “how we view ourselves, self-love and self-care, how the chronic illness affects intimate relationships, sex, and sexuality,” said Kirsten Schultz—creator of #ChronicSe x—when I spoke to her earlier this week. And don’t bother searching for the Facebook group. It’s secret, to ensure the privacy of members. You can still join, however, and they’ll be information on how to do that at the end of this post.

Breaking the silence

“Just a couple of years ago, only a few of us were talking about sex,” Kirsten said. Last year, she attended the national gathering of Arthritis Introspective in Milwaukee, and listened to “a great gal from a sex-positive, feminist sex shop talk about sex and sexuality.” Having grown up volunteering with Planned Parenthood, Kirsten has been very educated about sex and sexuality, but during the Q&A session at the talk, she realized that others “didn’t know as much,” she said. Following this gathering, she started writing for CreakyJoints about these issues.

By the end of 2015, she was slowly starting the #ChronicSex Twitter chats. “At first, about 10 people would show up, and now it’s 20-30.” The Facebook group has grown faster, she believes this is likely due to the enhanced privacy of the secret group.

Abuse and advocacy

Kirsten lives with chronic illness herself, having had systemic juvenile arthritis (JA) since she was five. She grew up in an abusive household, and was not treated. “My mom had issues and didn’t pursue meds, except giving me way too much Aleve,” she remembers. Her JA did not get treated until Kirsten started college and pursued care herself. “I failed seven or eight meds. Now I’m on Kineret and it’s working. It’s a daily shot and that has taken some getting used to.” She mentioned that the fact that this medication is working was helpful in helping her to adapt.

In addition to #ChronicSex, Kirsten is involved in a number of other projects. She started blogging in college as a way to explain her JA and how it affected her to her now-husband, and is still writing on her personal blog Not Standing Still’s Disease.

She works as an administrative assistant for a group of pediatricians, and includes arthritis advocacy in her work “I am gently nudging them to learn more about rheumatic diseases,” she said. Her workplace is close to a Children’s Hospital, where she connects with the pediatric rheumatology department. As well, she is working on a Master’s degree in healthcare administration, with a focus on patient advocacy. “I’m trying to keep patients at the centre,” she said.

Response to #ChronicSex

“My husband deleted his Twitter account a month before #ChronicSex started,” Kirsten said, laughing. Talking about sex and sexuality in public doesn’t bother her. Although her father-in-law and brother-in-law are both on Twitter, “I don’t really care if they know about my sex life,” she said.

The response from the chronic illness community has been very positive. “I’m surprised by how many people respond positively—they have been very welcoming.” Kirsten had received many messages of support, from those who participate, as well as people who have not joined #ChronicSex chats.

Next up for Kirsten is running a one-week email course on self-care. “It’s to help people rethink how they treat themselves and do self-talk. It’s about more awareness of self-love and self-care from a chronic illness perspective.” She also wants to focus on getting #ChronicSex to grow and to “show the humanity side of chronic illness and take other people on that journey with me.”

You can learn more on the new #ChronicSex website. If you’re interested in joining the Facebook group, contact Kirsten, or Mariah Leach. The weekly #ChronicLife chat happens both in the Facebook group and on Twitter every Thursday from 7-9 PM ET.

See More Helpful Articles:

A Beginner’s Guide to RA: Love and the Horizontal Tango

How Can I Improve My Sex Life with RA?

Masturbating: Good for the Soul, Libido, and Chronic Pain

How to Have Satisfying Sex despite Chronic Pain

Extra-Articular or Systemic Manifestations of RA

Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.