a couple touching noses together

Keeping The Romance Alive With AS

I've written a lot about Keegan's experience with AS and my experience as a caregiver, but I forget that we're still a married couple. We've been together for 12 years and married for 5 years. Most of my reflection about what it's been like supporting him through diagnosis, treatment, and surgeries. But I look back and wonder, how did we stay together as a couple? How in the midst of some of the most heartbreaking moments did we find time for ourselves? And how did we keep our love strong?

Knowing and honoring our love languages

Back in college during my psychology degree, I found out about the 5 love languages. Coined by Dr. Gary Chapman, family and marriage counselor, he theorizes that humans show their love in 5 different ways. The 5 languages are:

  • Words of affirmation
  • Quality time
  • Acts of service
  • Giving and receiving gifts
  • Physical touch

For each of us individually, these 5 love languages are ranked from highest to lowest. The highest being the most commonly we express love and desire to be loved. Immediately I wanted to take the quiz with Keegan to see how our rankings matched. We saw that while our #4 and #5 were the same, the top 3 were ordered differently. Keegan's #11 is physical touch and mine's words of affirmation. We each were speaking 2 different languages without hearing what the other person was saying. Keegan loves to be cuddled, hugged, and touched, but I rarely provided that for him. I always looked for a verbal recognition and words of love, but he wasn't saying anything.

Since then, we've changed how we interact with each other. This has helped us immensely with keeping our relationship going. When we're on the couch watching a movie, I always snuggle up with Keegan. When I come home from work, Keegan has written a note with a sweet message and puts it on the door.

Finding experiences to connect with each other

AS limits the amount of time we have together, so we seize any moment Keegan is having a good day. We've found connecting through experiences to be more valuable than anything else in our relationship. We take a ton of pictures, and when the tough days arrive, we quickly look back at those photos to remind us of the good memories and what hopefully is to come soon.

Whether it's going to a national park for a walk, traveling to Disney World, or just experiencing a new restaurant, these experiences help us bond together. Our favorite way to keep this pattern going is to surprise the other one with a date night idea. We do this so Keegan doesn't feel compelled to go on a Friday night if he's flaring up. Rather, we write it down on a list and come back to the ideas depending on how Keegan's feeling that date night.

Understanding physical intimacy, and its limitations

The physical aspect of romance is the toughest with AS. Having chronic pain is an easy mood killer. Who wants to have sex when their pain levels are an 8 out of 10? What about when brain fog and exhaustion are at an all-time high? Here are some quick tips we've found to help us through these challenges:

  • Allowing the body to relax and destress: Many times, Keegan and I like to enjoy time alone by giving each other massages. We've tested more body oils than we can count. This usually happens while we watch TV on the couch, but destressing helps Keegan's pain. Sometimes these massages lead further down the physical intimacy road, sometimes they don't. Either way, stress is a key factor for Keegan's pain, and finding ways to physically relax means less pain.
  • Connecting through physical touch with no expectations: Physical touch doesn't just feel nice, it also produces oxytocin, a hormone known to help couples, parents and children, and humans in general bond. This "love hormone" plays a role in many human experiences, including hugging, sex, and laughing. Oxytocin is known to have antidepressant and destressing capabilities, so we maximize on it. The second half is not going in with expectations around sex. If we start kissing, and Keegan's too exhausted or in pain, then stopping is okay.
  • Finding new ways to enjoy sex while embracing the uncertainty of Keegan's pain or immobility: This one could be an article in itself. As both of our bodies have changed from hip replacements to postpartum pregnancy changes, we've had to find creative ways to enjoy sex with each other. The first step in all of this was to learn how to talk to each other about sex. What turned us on the most? What were we willing to try? In a culture that teaches us to be embarrassed about sex, it took a while to get to that point. Once we did, we could research how people with limited mobility have sex. Mostly, it's about finding positions that are comfortable (back pain isn't really sexy) and discussing what to bring into the bedroom to make sex more fun. Again, all this knowing that partway through a physical moment, Keegan could get a hip cramp or become physically exhausted.

How have other AS warriors here kept their romance going? What's been the most important to keep things fun and intimate?

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.
poll graphic

Community Poll

How much about your AS do you share with others?