Our Big Secret: What You Don’t Know That We Wish You Did

Our Big Secret: What You Don’t Know That We Wish You Did

Our Big Secret: What You Don’t Know That We Wish You Did

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. In this first post for The Chronic Pain Couple, 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. 

Lucky for us, Johann and I are research fanatics and experienced health professionals who work with people dealing with difficult life changing events. We had access to the latest research on couples, chronic pain, couples with chronic pain and of course, had a head start with 4 university degrees between us in the areas of health and communication.

We committed to finding 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. This is when The Chronic Pain Couple was formed.

Our only hope is that you are encouraged by our openness. Ultimately, our mission is to empower individuals and couples to experience fulfilling lives and passionate relationships but we will settle with just being your entertainment during a flare up of symptoms. Join us by signing up for free to The Chronic Pain Couple Community now!  You don’t even have to be in a romantic relationship to make use of our support and strategies!

Written with love and pain,

The Chronic Pain Couple

Be brave, introduce yourself in the comments below!  Do you have a similar secret? We love hearing from new friends! If you would like to know more about us find our story here.

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3 Comments

  1. admin:

    Hi Barbara, Thank you for sharing your tips and thoughts! Yes, it’s good to be reminded to revisit end of life and worse case scenario wishes. What a lot of heart ache those discussions can save... Wonderful to hear you and your husband have been together for 28 years! Karra

  2. Barbara:

    What a great , and relevant blog! We take so much for granted in our relationships. Having a discussion with your significant other re such matters is crucial. While you are at it set a date to discuss your wishes should you require long term hospitalization, become completely incapacitated, end of life decisions....It may sound strange, but these discussions have brought a whole new level of intimacy to my relationship with my husband of 23 years.

  3. The Essential Date for Couples Dealing with Chronic Pain – The Chronic Pain Couple:

    […] post is the first following our welcome to The Chronic Pain Couple. Please be brave and share in the comments below if you have already had an information […]

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