Before I was diagnosed with rheumatoid arthritis, my main insecurities in the bedroom were related to how my body looked. But after years of coping with RA and other health conditions, I’m now much more concerned now with how my body works and feels — and how that affects sex and intimacy. I still have some insecurities with my appearance (most people want to look good naked to their partner, right?), but issues related to living with my rheumatoid arthritis trump those for me now.
I was a single mom to a toddler when I was diagnosed with RA more than five years ago. So it wasn’t just about adjusting to sex with chronic pain, but also being comfortable in a new relationship with someone. I had to learn to date and have sex with RA. Both presented a number of challenges for me.
Rheumatoid Arthritis Makes Dating Difficult
After my diagnosis, dating got really difficult because I faced a lot of rejection. Not everyone is going to understand what you are experiencing. Not everyone is compassionate toward our health struggles. Sometimes you know right away; sometimes it takes a bit for someone to show their true colors. For example, one guy refused to see me again because on our third date I had a bad headache. He was upset I was not well enough to get physical for the first time with him. Another guy I dated for a very brief period of time disappeared after I said I couldn’t come by because I wasn’t feeling well.
Some men didn’t want to be around someone with a disability. Sex came up quickly in some conversations after I revealed my illness — sometimes pretty graphically. (I’ve had guys ask me if I’m even able to give them a hand job.) This is all before getting to know things about me, like what I do in my spare time or if I’m a cat or dog person. (Cat, all the way.)
It wasn’t even just finding a long-term partner that was difficult, but also keeping up with dating physically. Fatigue, pain, medication side effects, and more can all leave me too tired. During and after some flares, I would take time off from dating because I just did not feel well enough to make the attempt to meet someone new.
I also came to realize I wasn’t interested in the same kind of guys as I was prior to my diagnosis. I am not interested in going to the bar to sip some beers and catch a late-night show. I found myself seeking people who have a healthy lifestyle, as I knew I would thrive the most with them. Self-care has become so important to me.
I found that men who had a close friend or family member with illness and those who work in a health-related field to be the most understanding about my rheumatoid arthritis. I also didn’t need to explain myself so much. The most understanding were those who also experience some sort of chronic pain or illness.
After a lot of ghosting, first dates only, or very short-term flings, I did find someone to be with monogamously. Thankfully, not everyone is put off by my disease — it just took longer for me to find people to stick around in my life. This makes you treasure them a lot more. It makes intimacy more meaningful and special.
Rheumatoid Arthritis Makes Sex Difficult
There’s a lot about living with RA that can take a toll on your sex life. Who wants to have sex when you’re in so much pain that it’s hard to dash off an email, or have so much fatigue you can’t even empty the dishwasher?
Some medications that treat our diseases or comorbidities can cause a lack of sexual interest.
And RA is much more than joint pain. Often with chronic illness, you have more than one condition. Depression, anxiety, endometriosis, and my osteoarthritis have each played their own role in deflating my sex life.
The Upside of Sex After Rheumatoid Arthritis
While there’s certainly a lot of negative to focus on, I’ve learned that there are aspects of my chronic illnesses that have actually made my sex life better. When you have a condition like RA and comorbidities that affect seemingly every aspect of your body, it makes you very physically and mentally self-aware.
Being this in tune with my body has actually made sex more comfortable and enjoyable for me compared to when I had no clue what was actually going on with my body. Maybe that’s also because I have gotten older — and more confident and comfortable in my skin — as my disease progressed.
Either way, rheumatoid arthritis has definitely sparked changes in my sex life and I’ve learned a lot about navigating the good and bad of it. Here’s what’s helped me adapt.
How I Have Great Sex While Living with Rheumatoid Arthritis
I often struggle to keep my eyes open and not turn into an arthritic pumpkin most nights by 8 p.m. After I finally get my son to bed sometimes sex is the last thing on my mind but my healthy arthritis-free boyfriend might be in the mood. There are a few options I can take.
Don’t compare
Do not compare sex today to that of your pre-diagnosis self. Get lost in the moment, not the past. Do not compare yourself to others who may not be experiencing the same battles in life as you. I don’t compare my sex life with my friends because our lives are different. Sex is between me and my partner.
Have sex during your best hours
Who says you have to have sex right before you go to bed at night? For me, the morning or middle of the day are when I feel my best. It’s okay to schedule a time of day to be intimate. Chronic illness has taught me that you need to adapt to life and make your situation work for you.
Sometimes I tell my boyfriend I am not feeling good enough that night — I’ve had a strenuous day or something is flaring, but after a good rest I’ll feel better or after my infusion in a day or two, I’ll feel more myself. I was terrified of telling him these things at first but when I did he was completely understanding.
Take a nap
I often have a nap before my partner comes over to make late nights easier. He has two kids and a full-time job, so he can’t always see me during my best hours. Naps in the afternoon can help me enjoy my evenings with him.
Try a warm-up
A hot bath or shower before sex can help release some of the tension and pain from rheumatoid arthritis. Or my favorite: Go to a sauna or swimming before.
Communicate
I am open and honest with him about how I really am doing. If I am just really not having a good night or it’s medication day, sex is probably not going to happen. But we make a point to remain close under the sheets together. This may be spooning, kissing, cuddling, massaging, or caressing. It doesn’t always need to be the act of sex to be intimate.
Try mind-over-matter thinking
I recognize depression and RA can make me feel a loss of interest in sex. I remind myself that I don’t need to listen to those negative thoughts about being too tired or how much physical energy I need to exert to partake. Often they are just negative thoughts and not the truth.
Sometimes I am just not in the mood, so I give my partner the opportunity to put me in the mood. I also remind myself that once we get going, I’m probably going to have a pretty good time — and most of the time, that is correct.
Don’t go for too long
With RA, I can’t do anything for too long a time: I can’t stand for too long. I can’t sit for too long. With sex, I can’t tolerate too much of the same position for too long. That’s part of living with arthritis. It helps a lot to switch things up position-wise so my joints don’t get too stiff. Choose the most comfortable positions or switch things up as positions become uncomfortable.
Use supports
Some days I’ll need more physical support during sex to get comfortable. This may be the use of pillows, a wall, a bed frame, the couch, or my partner. Do what you need to do. Get creative. Use lubricants or toys if it helps and you enjoy it.
Exercise and stretch regularly
Sex is a lot better and easier when I keep up with my regular physical activity. Even before my RA diagnosis I struggled with sex because I gained weight over the years, had a child, and it took a number of years to get my proper diagnosis. I didn’t really understand for a while why I was struggling with sex. When I finally did get my diagnosis and started focusing on my treatment — which involves regular exercise — sex (and a whole lot of other parts of life) got easier and better.
Fuel your body right
I’ve noticed over the course of my rheumatoid arthritis journey that I can’t tolerate certain heavy foods or alcohol like I used to. My boyfriend and I have what I call “anti-inflammatory dates.” We go the sauna or for a massage together, then back home to eat a charcuterie board of delish anti-inflammatory foods like nuts, fresh fruits and berries, vegetables, salmon, and a little bit of cheese while listening to music. We also often do yoga and stretching. Not only is this healthy in general, but it helps ensure we’re not too tired, bloated, or sluggish for sex when we head to bed.
Address your mental health
What really helped me have a better sex life was finally addressing my mental health struggles. My rheumatologist helped refer me to the help I needed. In the early years of my diagnosis I regularly saw a social worker and a psychiatrist to help me understand and cope with my emotions.
Over time, I’ve developed better self-management and coping skills. How I take care of myself now has given me more confidence and self-love, which has made sex and having a relationship a lot more fulfilling.
Addressing problems with sex is not easy, whether you’re single, dating, partnered, married, whatever. If you’re struggling and don’t know where to start, consider speaking to your rheumatologist, general practitioner, occupational therapist, physiotherapist, or nurse. Be honest about what you’re experiencing and open to different solutions. Talking about it is one of the best first steps. (It’s certainly more practical than spilling everything in a highly personal essay like this!)
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
