Community Views: RA and Intimate Relationships

Many people associate the month of February with Valentine's Day and the centuries-old symbol of the heart. But did you know that February is also World Heart Month?

This year, we're celebrating World Heart Month by tackling a sometimes challenging topic: rheumatoid arthritis (RA) and intimacy.

We recently asked our Facebook community, "How has intimacy changed for you since being diagnosed with RA?" Here's what they shared.

With an understanding partner, we can get creative!

A few community members emphasized the importance of having a partner who is patient and understanding of their limitations and needs. With a partner who is willing to adapt and explore multiple facets of intimacy, many challenges can be overcome with love and care.

Exploring our options

"Positioning was a struggle, but we've worked it out. Took some time to get used to having only a few options, but I am really only able to do it because he is always concerned about my being comfortable. Even if we can't do everything like we used to, both of us still need those endorphins and the connection."

"I have an understanding partner who helps me make sure we're getting it done, lol. Is there more to marriage? Yes. But it really keeps you close and your needs fulfilled."

"I, too, have a very understanding husband. I feel bad sometimes because it’s difficult to do certain positions that we did in the beginning, but we make it work mostly."

Communication and creativity

"Find someone who can deal with your limitations, and then I say get creative. I have RA and complex regional pain syndrome in my legs, but my fiancé has muscular dystrophy and it affects his arms. We have to get creative sometimes, but our physical connection is important to us."

"I've been married 35 years, and intimacy is very important to us. I was diagnosed 25 years ago. My husband is understanding when I have a flare. We have had to modify what and how we do things, but it works. Take advantage of the good days and rest during the bad. Communication is the key."

Want to share a story of how you and a partner made intimacy work for you? Share an experience or advice for others in the box below:

Exploring other ways to be intimate and show love

Some community members explained that their idea of intimacy has changed since their diagnosis. These couples began to explore different expressions of intimacy that helped accommodate their limitations while also meeting their needs. Some couples have chosen to forego sexual intimacy altogether in favor of other forms of closeness.

Facing difficulties together

"The past 3 years have been scary and difficult, but we're both climbing back out of that pit and have recently reintroduced sexual intimacy. It's way different than it used to be, but we are patient with each other and enjoy the time we have left. He is 80 and I am 74."

"To be frank — as I’ve been with my husband for 40-plus years — while I enjoy being intimate, achieving orgasm is difficult. Medication, discomfort, pain, and fatigue can prolong the time it takes to reach orgasm. Then you can add in frustration (couple of meanings intended). At times, the effort to get that result just isn’t worth it, which I mentioned to my husband. I can hear some of you gasping in shock! Being that honest was pretty difficult, but a relief. Thankfully, there are other ways to be intimate and loving with each other that we’ve figured out along the way. He really is the most special man."

Realizing there's more to intimacy

"We have been married 43 years. We are in the quiet, calm phase of enjoying sitting on the couch, holding hands. We take turns giving foot massages and back rubs. That sometimes leads to other levels of intimacy, but it's all good and works for us. I have had RA for years."

"Thank god I've got a wonderful husband who values our friendship more than the deed. We're closer than ever."

"On top of my RA, my wife has multiple sclerosis. In a way, it's a curse, but a blessing also, since neither of us is able to anymore. We are happy and realize there is more to our marriage than intimacy."

Has life with RA made intimacy a challenge?

A few of our community members expressed facing challenges with finding an understanding partner. Even among loving couples, some people with RA find that intimacy challenges put a strain on their relationships. Do you have advice for others going through the same thing? Share your advice in the box below.

RA stigma and a lack of understanding

"Dated a woman for 11 years, and 7 years in, I got diagnosed with RA/AS. It changed everything, and we broke up, I know, because of this. The worst thing that still rings in my head is she called me a 'Freak Show.' I still can't forgive her for that, and I struggle with it now every day trying to move on."

"Potential relationships withered, as I had no energy, and nobody could understand the pain issues. I gave up. I'm on new medication that is working, but [I have] no energy to bring to intimate relationships."

Anxiety over the future

"Been a subject of many 'tough discussions.' Reading through the comments, it helps to know I'm not alone. Was diagnosed when I was 7 years old. I'm now 46, and perimenopause is kicking in. I struggle to get into positions due to the pain and equally have little interest. I wondered if that could be a side effect of the meds. I'm due to get married this year after being with my current partner for 8 years. He's my soulmate, and I'm so scared that this could split us up."

"This is a really hard topic for me because I'm terrified this is going to be the thing that destroys my marriage. My husband is a sweet soul, but we've only been married for 2.5 years. I've been diagnosed for at least 15, and the older I get, the worse I feel. I'm just so scared of what the future holds because some days I can barely walk."

Need advice or support from our community? Leave a comment below.