Arthritis is usually characterized as an old person’s issue, but that’s not totally accurate. Sure, the condition, which causes swelling and inflammation leading to joint pain and stiffness, is most prevalent in the 65-and-up age bracket. Still, out of over 54.4 million Americans who have arthritis, at least eight million are between the ages of 18 and 44. And no matter when in life it strikes, arthritis can have major effects on people’s sex lives.
The sexual effects of arthritis vary widely from person to person, as do people’s wider symptoms. Arthritis is an umbrella term for over 100 conditions, each with its own unique effects. For example: Osteoarthritis, the most common condition, is caused by injuries or gradual wear and tear on joints and connective tissue. It usually affects people’s hand and knee joints. Ankylosing spondylitis, an inflammatory disease, predominantly affects the joints between spinal vertebrae and large joints like the hips. Arthritis caused by autoimmune or inflammatory conditions can cause not just joint issues but also fatigue and flu-like symptoms—and in some cases, rashes, rapid weight loss, and eye problems.
Depending on what kind of arthritis a person has, how they manage it with medication, and what their symptoms are, joint pain and stiffness can make it hard to get into or stay in certain sexual positions. Pain and fatigue can also cut into a person’s sex drive, stamina, and enjoyment of sex. Many inflammatory forms of arthritis limit blood circulation, which decreases sexual arousal, and specifically creates issues with erections or natural lubrication. Inflammatory arthritis can also make touch feel uncomfortably sensitive, and weaken or eliminate orgasms. Some of the most common medications used to control arthritis symptoms additionally tend to lower people’s sex drive or lead to orgasm issues, as well. These physical changes, and the knowledge that many forms of arthritis get worse with time, can trigger anxiety, depression, and image issues, which can compound the sexual difficulties that physical symptoms create.
Although arthritis is a lifelong condition that tends to change over time, it’s possible to limit its effects with early, consistent, and appropriate treatment. But many people with arthritis say that they don’t get enough information from medical experts on how to account for changes to their sex lives as they go. This likely reflects the facts that, as a few researchers have noted in recent years, the sexual effects of arthritis have not been well studied, and both patients and medical experts can be embarrassed about bringing it up.
Arthritis education and advocacy groups have stepped in to fill this gap, creating meticulous guides to navigating sex alongside arthritis, often including breakdowns of acts and positions to avoid—and to try!—for every type of joint issue. But direct accounts of people’s experiences with the effects of arthritis in their sex lives are still fairly hard to find.
VICE spoke to Olivia, a woman with rheumatoid arthritis, and her partner Will, both of whom are in their mid-30s, about how they’ve managed their sex life since her relatively recent diagnosis.
This interview has been edited for length and clarity. Olivia and Will’s names have been changed to protect their privacy.
Olivia: In 2019, one joint in one of my hands suddenly started to hurt constantly. Will works in medicine, so he got me in with an orthopedist within about a week, who put a steroid shot in that hand and splinted it. Two weeks later, when I went back for a follow-up appointment, I said, “OK, now not only this joint hurts, but also all of these other joints in both of my hands—and my wrists.”
He was like, “I don’t think this is just an orthopedic problem. You need to see a rheumatologist.” So, Will made another phone call and I got an appointment in February 2020.
My time from first feeling clear symptoms to diagnosis was quick, compared to others’ experiences—although when I first got diagnosed the doctor just said I had inflammatory arthritis, instead of rheumatoid arthritis specifically. It took a few more weeks to get that diagnosis.
Will: Arthritis runs in my family. I’d seen another form of arthritis devastate my grandmother over the course of decades, before we had good drugs to handle the condition. When Olivia got diagnosed, I had a very morbid picture in my head of how disabling it would be over time.
Olivia: Will and I started dating when we were freshmen in college, so I knew his grandmother, and I’d seen her go through hand surgeries at the end of her life, and I had some similar thoughts about what the condition would mean for our lives—and our sex life—as it progressed.
The fatigue and joint pain caused by the condition quickly did make it hard for us to have sex.
Will: Yeah, whenever Olivia was in pain, sex was just not on the table. Once in a while early on, she’d take extra pain meds to get comfortable enough to have sex. But that was really about it.
I also felt like I had to act as a caregiver initially, taking over all of the housekeeping duties and constantly asking Olivia if there was anything I needed to do for her.
Olivia: When my pain and fatigue are bad, there are sometimes days when I can’t do much except rest. But even during really bad times, I can still do some things, like fold laundry. And often what I want is space—room to rest without being bothered by constant questions about what Will can do. And to do normal things, not focus on how my body and how it’s failing me.
Will: When you’re in that caregiver mindset, it’s hard to flip the switch between that role and being more sexual with a partner. I didn’t want to feel like having sex was a burden, or like it was quid pro quo, where I was helping Olivia through this and now I could expect sex in return.
Olivia: I’m more turned on when Will is more dominant than when he’s a gentle caregiver type.
It didn’t help that around that time we were sleeping in separate bedrooms as well. This was early in the pandemic, when we really knew nothing about COVID, and Will was interacting with patients. He had colleagues who rented out other apartments, or slept in hotels, to avoid exposing their families. Will slept in our guest bedroom. We still talked and ate meals together while trying to keep some distance, like sitting on two separate couches facing each other from opposite sides of our living room. But we only had one or two conjugal visits within like three months.
Will: And we found that many of the positions we were used to just weren’t comfortable for Olivia anymore.
Olivia: Yeah, I can’t get on my hands or wrists at all—even when my symptoms aren’t that bad. And I have pain in my hips, so sometimes it’s hard to keep my legs open.
Will: To make any modifications to sex or positioning, you’ve got to control the pain first, so we weren’t able to do as much experimentation with new positions early on when Olivia was still in a fair amount of pain and discomfort, and trying to find the right treatment.
Olivia: We weren’t really talking about how to address this change in our sex life for a while. It was on our minds, but dealing with the pandemic really limited our bandwidth.
Will: Yeah, there was a lot going on in our lives. It was just hard to figure out how to have a sex life at the start, so, for a while, we didn’t have much sex at all.
Olivia: My doctors did start me on steroids pretty quickly, to see how my body would react to them. Then, I started on hydroxychloroquine, which is commonly used to control arthritis symptoms.
Will: That was a fun hoop to jump through, because that’s what the Trumpers were pushing at the time as a COVID cure. We got all sorts of shade for ordering that and picking it up.
Olivia: Yeah, it was a pain in the butt starting on that in the spring of 2020. It made my joints feel good, but it also made me nauseous. So after a couple of months, I started on methotrexate, a fairly standard first-line medication for rheumatoid arthritis, which makes you feel crappy one day a week after you take it. But instead of feeling crappy on random days, you feel crappy on your set day and you feel more functional, aside from flare-ups, on other days, which gave me more of a sense of control over when I could do active things, like having sex.
I also got on a Facebook group for people with arthritis. A woman posted about how she likes to have sex. She literally drew a diagram of her lying face-down on the bed and swore it was the best way to limit the effects of joint pain. So, after a while of just not talking about our sex life, I suddenly told Will, “Hey, maybe we should try this position. It’s worked for other people.” Alongside my symptoms coming under control, that really sparked open conversation for us about how we’d just grown sexually distant and needed to get back on the same page.
Will: I also eventually realized that the world wouldn’t fall apart if I didn’t fill a caregiver role 24/7. I learned to just occasionally ask Olivia what she needs, rather than make assumptions.
Olivia: Therapy helped with that.
Will: We started trying new positions. We got a wedge pillow, which is great for making sure that Olivia’s muscles and joints don’t have to do as much work to get into or stay in positions. There are many different ways to make sure her pain is at a minimum when we have sex, too.
Olivia: Yeah, whether it’s taking a muscle relaxant or painkiller beforehand.
Will: Some people use cannabis.
Olivia: Or have a glass of wine—whatever works for any one person’s body.
Will: Outside of the stretch when we were barely having sex and having trouble talking about it after Olivia’s diagnosis, we’ve always post-gamed our sex. Now, when we have issues where things don’t go as planned, like with a new position, we just…
Olivia: Break down the play.
Will: Yeah, and adjust it next time.
Olivia: Like, sometimes Will is too gentle with me because he’s afraid of hurting me, so after sex I’ll tell him something like, “Hey, what bothered me was my hips being open, not the intensity of what you’re doing. So, maybe we can avoid positions that involve me opening up my hips next time, but you don’t have to be so gentle. I like our normal intensity more.”
Timing is still really tricky for us because I know that the mornings are usually hard for my symptoms, and often, by the end of the day, I’m going to be fatigued. Will works odd hours, so it’s really hard for us to plan around the patterns in my symptoms that do exist.
Will: It is hard to be spontaneous, too. We have to thread the needle carefully, planning date nights where we won’t be out too late, or too tired when we get home. We know that, even if our timing—if sex—doesn’t work out, it doesn’t mean that either of us is rejecting the other.
Olivia: Even though my symptoms are well-controlled now, I still have to adjust the medications I take as time goes on as my condition progresses. I still have bad flare-ups. At one point because of a COVID lockdown issue, I couldn’t get my medication on time, and I was in so much pain I couldn’t get out of bed for three days. So, there will always be some ebb and flow with the condition, which we can’t always predict. Some days are terrible, and some are good.
Will: If there’s a week or a month when Olivia’s symptoms get really bad, sex can go off the table again. That can be frustrating, and I have a lot of guilt expressing that frustration to her.
Olivia: As we’ve tried to communicate through all of this, we’ve decided we don’t have all the answers. We actually started seeing a sex therapist recently, and that’s been a great help. We’re currently working with her on trying out forms of non-penetrative sex. I prefer penetrative sex, so it’s usually our default, but other forms of sex may actually work better for me in terms of pain, positioning, and energy levels—like Will using a vibrator on me. We’ve actually developed a long list of things that we’re going to try, like side-by-side masturbation.
Will: We may have started talking about how to have sex alongside arthritis, but sex therapy has helped us keep talking through sex. There’s so much about desire, and how people can have sex, that we can get in our heads about. It’s good to be able to talk about it with someone else. Even just the fact that we’re both willing to be in therapy for this helps.