The #ChronicSex Movement – A Safe Place to Discuss Self-Love, Relationships, and Sexuality with Illness and Disability
When you think about rheumatoid arthritis, what comes to mind? Pain. Fatigue. Mobility difficulties. Medications. Side effects. With all of these considerations in mind, it seems quite obvious that an RA diagnosis could potentially have a serious impact on a person’s sex life. But despite the seemingly obvious link, I’ve always been surprised that the issue of sex and RA seems to be that thing no one talks about.
Though it wasn’t exactly an easy topic to open up about, I originally started writing about sex and RA precisely because no one else was talking about it. I am certainly no expert on the subject – and I honestly still struggle with many of these issues myself – but I thought that being open about my experiences might help others feel less alone. I’d like to help people figure out how to work up the courage to talk to their doctors about sex. I hope to help people brainstorm ways to communicate with their partner about the challenges of RA. And, importantly, I want to help people realize that while it may not seem like we “deserve” to worry about sex when everyday tasks are so difficult, a healthy sex life is a quality of life issue that we have every right to try to improve, no matter what other issues we may be facing. (In fact, the World Health Organization considers sexual health a part of human rights!)
As I opened up and started writing about these difficult issues, I got in touch online with the amazing Kirsten Schultz. Kirsten, who has been collecting chronic illnesses since the age of 5, pointed out to me that it wasn't just people with RA who might be struggling with these issues – many different illnesses and disabilities could potentially have an impact on a person’s sex life. Realizing that this was a bigger issue than I originally thought, I agreed to help Kirsten try to shed more light on the subject.
Today, Kirsten is managing a wonderful new movement called #ChronicSex that aims to make this difficult topic a bit easier to handle by providing a safe space to discuss self-love, relationships, and sexuality with illness and disability. The ChronicSex.org website contains a huge list of resources about how illness and disability can impact self-esteem and body image; self-love and self-care; LGBTQ and gender roles; dating; relationships; masturbation; pregnancy, fertility, and parenting; and sex in general. The site also offers resources concerning disability-friendly sex toys; sex positive sex shops; kink and BDSM; and links to other chronic illness organizations.
In addition to the fantastic resources on the website, there’s a #ChronicSex chat on Twitter every Thursday at 7pm Eastern, which gives people a chance to discuss these issues with others. Or, if you think Twitter is a bit too public for discussing such intimate topics, there’s also a private Facebook group that you can request to be added to by getting in touch through the website. Kirsten is also in the process of starting a podcast, where she will interview patients and experts and discuss these issues in more depth.
I’m really excited to see where this movement goes and I’m proud to be a small part of it! I hope that by making these issues a bit easier to talk about – and providing resources and ideas to help – people living with chronic illnesses can work towards having a better quality of life by focusing on sexual health.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?