The Chronic Pain Couple Share their story.

It was probably the most popular restaurant in town. As we drove past the entrance, we could hear the live jazz band above the music in our car.

Johann, my husband, found a park not too far away and quickly turned his attention to me. “Recline your seat, we won’t waste a minute when we get back to the car,” he said as he put his hand on mine. I had spent extra time getting ready that night so it felt good to hear Johann say that.

Our work friends greeted us when we were shown to our table. Although I made every effort to order a dish I hadn’t tried, I settled for the usual, salmon. Is it bad to admit I most enjoyed the part of the evening when they complimented us on our new private health practice and how cute the pictures of my son on social media were?

That was probably the only time in that restaurant that I wasn’t thinking of what was to follow in the car later.

Johann took care of the bill, we said goodbye to the others and we started walking to the car, fast. When he opened my door, I am thankful we already reclined the chair. I couldn’t have waited another moment.

To lay down that is. To have my husband pass me one of the sick bags from the glove compartment and help me strap my hip brace on around my new dress. Silly I know, but the tight brace gives me a muffin top so I shy away from wearing it out.

Our secret? I have chronic pain. Not a little niggle of pain once a day that you can pop a Panadol or Tylenol for, and it has changed everything in our life.

I can’t even say ‘from the moment I wake to the moment I go to sleep I am in pain’ because after I fall asleep, a few nights a week, I wake in a state of heightened pain so I move to our bath for a few hours until I am too exhausted to keep my head above the water.

· A cycle trip through the Austrian Alps

· Sailing to the East coast of France

· Romantic rooftop dinners in Morocco

These are the first memories I think of when I am in the bath at 1am. My husband and I built our marriage on many adventures like these before life changed abruptly.

The sudden disabling hip pain I experienced 6 years ago, not long after completing my favourite half marathon, was not a simple injury, so it turned out. It was an early symptom of spondyloarthritis, a chronic inflammatory disease of the spine. I have since learned there is a fivefold to 16-fold increase in having spondyloarthritis if a first-degree relative has the disease (thanks mum) and for me, it likes to manifest itself mostly as severe temporomandibular joint (TMJ), lumbar and sacroiliac joint (SIJ) pain (the jaw and lower spine/pelvis region).

But that’s all the wallowing you get. I want to focus on how although my husband’s and my lifestyle changed dramatically, we have not let the chronic pain strip us of a passionate and fulfilling relationship. It sounds easy, but as you may know if you have chronic pain or your partner does, there is not a lot of information available for ‘how to keep a relationship alive’ when someone is dealing with chronic pain. It changes you, it changes the dynamic of your relationship and your future plans and feels like a third person is with you at the dinner table.

Johann and I are research fanatics and experienced health professionals who work with people dealing with difficult life changing events. We have access to the latest research on couples, chronic pain and couples with chronic pain and have four university degrees between us in the areas of health and communication so we set out to find the secrets to a remarkable relationship in unremarkable circumstances. After many years, we are still on that mission but now we have such a large collection of practical strategies that really work to create a passionate and fulfilling marriage, that we decided it was time to start sharing them with others. But there is one problem, in order to do that, we need to share our secret and broadcast my brokenness. Hopefully one life is impacted by our openness.

Written with love and pain.

The Chronic Pain Couple