A Simple Way I Help My Partner With Ankylosing Spondylitis

“What’s one of the best things I can do to help?” I asked my husband, Dave, who has ankylosing spondylitis (AS). We were sitting together outside, relaxing after the whirlwind evening routine of getting our kids into bed.

He pondered this question for a minute, as we watched the stars twinkle overhead, and reflected on the many needs of a person with a chronic disease. Because Dave and I both have AS, I have the perspective of being a caregiver as well as needing help myself.

Caring for someone with a chronic disease can be rewarding, but it’s also tiring and sometimes scary. Helping a partner with AS is also confusing because you can’t just reach out and fix anything. Often, the battle is fought invisibly, with many physical and psychological implications.

His answer was simple. “Listen,” he replied. “But not the kind of listening where you’re also trying to problem-solve. What I find really helpful is when you just listen, for as long as it takes.”

I know what he means about simply needing someone to listen. Living with constant pain is horrible, and when I’m having an AS flare, I can feel the frustration and anger building up inside me like a pressure cooker.

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When a Husband and Wife Both Have Ankylosing Spondylitis

Talking helps ease the pressure of chronic pain

In the early days of AS, I was completely overwhelmed. I was only getting an hour or two of sleep at night because of the pain, I was trying to look after our young children, and I still somehow had to get to doctor appointments. All the while I was trying to simply think straight and figure out what was wrong with me. (AS can be such a difficult condition to diagnose.)

Dave guided me to a chair one evening and gently said, “I can see you’re really struggling. I want to help, but I don’t know how. Talk to me about what you’re finding difficult, and I’ll write it down.”

I blurted out all of my problems over the next hour. I talked about everything I was having issues with, including having difficulty cooking meals, worrying about the impact on our relationship, and desperately wanting to go for a walk without having to push a heavy pram.

That wonderful man listened and nodded along. He wrote a list of everything I was struggling with. It didn’t need to be a list of solutions, but it was a life-changer for me. I felt truly heard and loved, and that was more helpful than any solution to an individual problem.

Why fixing isn’t the same as caring

When you have AS, there’s an overwhelming amount of information and challenges to work through. It makes a huge difference to have love and support when you’re in the depths of a flare, or empathy and patience when you’re tearfully discussing a painful symptom for the umpteenth time.

Trying to find a solution, or fix the problem, is meant to be helpful, but instead, it can add stress in the moment. A solution can seem like an extra job that needs doing, when we may simply need to release some feelings.

I understand why Dave said that he needed someone to just listen. Talking about the pain of ankylosing spondylitis, or about our frustration with the many ways our lives have changed, is like popping a huge, angry pimple. The pressure is released, and the simple act of sharing our troubles is surprisingly therapeutic.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.