I was diagnosed with rheumatoid arthritis (RA) when I was just 25 years old. At the time, I was in a serious relationship with my boyfriend of 5 years. Fast forward a little more than a decade and we’ve now been married for 9 years and have 3 children — ages 8, 5, and 2.
While it’s not unusual for exhausted parents to struggle with maintaining a healthy sex life, my husband and I faced challenges with intimacy years before our first son was conceived. After my RA diagnosis, I went from being a healthy athlete to struggling daily with joint pain.
Side effects from medications, such as weight gain and hair loss, impacted my body image. I also struggled with anxiety and depression as I adjusted to my lifelong diagnosis. All of this translated to challenges in the bedroom.
If living with RA has had a negative impact on your sex life, you’re not alone. According to a systematic review, anywhere from 31 to 76 percent of people with RA experience sexual problems. While I’m by no means an expert, here are four things about navigating intimacy and sex with RA I wish I had known sooner.
If you live with RA and struggle with your sex life, your rheumatologist may be able to help. Sometimes, the medications that treat RA (or depression, which can be related) can take a toll on your libido, cause vaginal dryness, or have other side effects that can impact your body image. Your rheumatologist may be able to offer alternative medications or other useful resources and referrals.
I know it can be uncomfortable to talk about sex, but your doctor can only help you if they know there’s a problem. There’s a statistic from a 2013 study that has always stuck in my mind: In a survey of rheumatology health professionals, 96 percent considered sexuality a relevant topic in rheumatology care, but 71 percent rarely or never raised the topic with their patients.
This means to get the help you deserve, you probably need to raise the subject yourself.
Open and honest communication with your partner is critical in any relationship. If you have RA, it’s especially important to make sure your partner understands the reality of your disease.
Do your best to be honest and direct about how RA impacts you physically and emotionally, and ask your partner if they have questions about it.
While the diagnosis may belong to you, building a healthy sex life takes participation from two people. If you can share your feelings, frustrations, and desires with each other, it will be easier to find ways for you both to feel satisfied. My husband and I try to face the limitations caused by my RA as a team, which allows us to turn something negative into a chance to strengthen our partnership.
If you’re experiencing pain and fatigue, sex can feel overwhelming and unappealing. The key to maintaining intimacy during these challenging times is to remember it doesn’t always have to be about intercourse.
There are many other ways you can creatively find pleasure and connection together. Options range from kissing and cuddling to oral sex and mutual masturbation.
You can also try different sexual positions and be open to changing positions halfway through if necessary. This booklet (PDF) from Arthritis Research UK is one of the only resources I’ve seen with pictures of recommended positions based on which joints are most problematic.
Whether you’re experimenting with positions or intimacy beyond intercourse, be patient with yourself and your partner. Mishaps are inevitable, so do your best to laugh together instead of getting embarrassed. A sense of humor is an amazing tool for figuring out creative solutions while bringing you closer together.
While this idea may make you blush, there are many products available that can make sex with RA easier. For example, an over-the-counter lubricant can really help if vaginal dryness is an issue (though be sure to pick a fertility-friendly brand if you’re also trying to conceive). And don’t underestimate the value of a well-placed pillow for extra support!
Vibrators and other props can also be useful to increase pleasure while easing strain on your joints and muscles. While most people say “sex toys,” I once spoke with an expert on sexuality and relationships who preferred to call them “enhancements,” and I agree with this idea. The goal is not to replace any part of sex or intimacy, but only to enhance the experience for both of you.
Sexual health is an important part of your quality of life. Everyone deserves to improve their sexual health, no matter what other health issues you may be facing. And while it may be challenging to navigate intimacy and sex while living with RA, with patience and teamwork it’s certainly possible.
Mariah is a writer, patient advocate, and mom of three who was diagnosed with rheumatoid arthritis at the age of 25. After her own experiences with pregnancy and motherhood, she launched Mamas Facing Forward — a pregnancy and parenting website focused on the unique challenges faced by women with chronic illnesses who are or want to become mothers. She also runs a private Facebook support group that connects mothers with chronic illness from all over the world.