“You’ve done everything you can to get better, but we’re starting to think your joint problems aren’t related to a running injury. We think you have a disease that’s spreading through your body.”
I remember holding my breath, trying not to breathe in the words the specialist left hanging in the room. If I breathed them in, I’d have to accept everything was much worse than we first thought. The problem was, I knew the specialist was right. When she said those words, as much as I wanted to take them, fold them back up, and politely return them to her, I knew something was quickly and unsympathetically taking over my body.
Four years later, the term spondyloarthritis made an appearance on my health records. This was long after it had settled in my joints.
The relief of a diagnosis was there, deep down. It’s hard to experience relief though when you’re always thinking about movements and problems healthy people don’t. How long can I stand? How long can I sit here? Is this medication the right one for me? From the moment I experienced my first symptoms, my life hasn’t been the same, and the fact you’re reading this in an SAA article tells me you might know something about that feeling.
By the time I first heard the word spondyloarthritis, it wasn’t only my body that was unwell or my joints I had questions about. I was a young newly married woman and the pain and mobility issues (and if I’m honest, emotional challenges) had started to affect my marriage. I was a speech pathologist at the time, active, adventurous, and my husband and I had built a wonderful relationship on travel, fitness, and spontaneity. Spondyloarthritis changed everything for me, so naturally, for us.
I remember searching the internet over many months for advice on how to keep spondyloarthritis—well, actually any kind of chronic illness and pain—from stealing my joyful marriage. Except for a few generic articles on how to “survive pain and sustain a relationship”, there wasn’t much addressing this problem. Besides, I don’t think anyone wants to just survive and have a sustained relationship. Well, I didn’t, which is why I dedicated a number of years to researching and creating a practical blueprint for how to have a remarkable relationship in spite of chronic pain and illness.
Spondyloarthritis is difficult to explain to a loved one. Pain, stiffness, and fatigue are invisible, so unless we strap a heat pack to our body 24/7 or bring our symptoms up in every conversation (which I don’t advise), our constant physical and mental struggle with this condition is not obvious. That’s OK though, because what I discovered is that it’s possible to use a few key conversations and concepts within four specific areas that allow partners to experience overwhelming love, joy, intimacy, and support, even during a flare-up. These four areas are:
Now before you roll your eyes at the first one, communication, it’s not what you think. I don’t suggest we be “open and honest” with our partner, no. This was the advice I first read all those years ago and I still don’t know what I’m meant to be open and honest about.
You see, I co-own psychology clinics on the East Coast of Australia and within those clinics, I’m known as a process ninja. I want my whole team to be able to have fun at work, to enjoy each other’s company and for our day to run smoothly. For this to happen, we have to eliminate problems. How do I do this? With better processes. When a problem comes up, I write a policy to make sure that problem doesn’t arise again.
Our relationships may not be a business, but we have business to take care of in our relationships if we don’t want the challenges of spondyloarthritis to reverberate into our everyday with our chosen human. Practical processes in the form of communication hacks such as using “worry time”, a dedicated time for you to problem solve together or learning what you each value so you can more easily prioritize when fatigue hits can create space for more joy and fun in everyday interactions with your partner.
And while on the topic of partners, it’s important for us to consider relationship satisfaction is not only determined by the intensity of pain or illness a partner experiences, but also the mental health wellness of BOTH partners. I didn’t know this. In the beginning that is, most of my first health professionals didn’t have an extra chair or question for my husband. Plus, we were stuck on a highway to healing, always waiting for the next treatment to make everything ok. Understanding the importance and range of solutions outside pain treatments for a better life together with spondyloarthritis was transformational.
If you’re ready to make a pit stop on your own highway to healing to learn how to have a remarkable relationship in spite of spondyloarthritis, know it starts with getting on the same team as your partner. It starts with remembering it’s not you and spondyloarthtis vs your partner but you and your partner vs spondyloarthtis. When couples come together and better understand the ways chronic pain is impacting their relationship and the easy steps to remedy it, it’s amazing what couples can overcome and enjoy. What is also amazing is how fast intimacy returns or becomes a focus for improvement when communication and emotional wellbeing is worked on.
Just over 70% of individuals with chronic pain report problems with intimacy. Challenges with desire as well as pain during sex are common while supporting partners can find themselves struggling to adjust to changes to their intimate life as well.
It’s helpful to understand we all have a sexual response mechanism that includes a sexual accelerator, which is always on the lookout for sexual stimuli, as well as a sexual break, which tries to keep our attention on survival (according to Emily Nagasaki, a world leading sex expert). Chronic pain is a sexual break. No surprise there.
It’s ideal to have a healthcare professional who is open to discussing concerns about intimacy and able to create a treatment plan, and for us to be brave to discuss various factors impacting our intimate life such as medication side effects, self-esteem issues, painful sex, mental health difficulties or lack of desire.
A few practical strategies for maintaining a thriving relationship despite chronic pain include:
In my life and in my research, I’ve learned that you don’t have to settle for a passionless relationship or survival-based coexistence with your partner. You’re worthy of love, and no matter the challenges spondyloarthritis brings, you’re capable of a fulfilling and remarkable relationship. Stay well.
About Karra:
Karra Eloff is the author of The Chronic Pain Couple: How to be a joyful partner and have a remarkable relationship in spite of chronic pain and the director of Eloff & Andrews Clinical Psychology in on the Sunshine Coast of Australia. She can be reached at www.chronicpaincouple.com.
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