3 ways I help my partner with his ankylosing spondylitis pain
Listening, enabling joy, and avoiding judgment: These are the gifts I offer daily
My husband, Dave, has been talking about his ankylosing spondylitis (AS) symptoms for almost 20 years, though for more than a decade, neither of us realized that AS was the cause of them. Although we didn’t know why he had a terribly sore back or strangely stiff and painful glutes and hamstrings, I could see he was often in a lot of pain.
As with many of us living with this chronic disease, it took years for him to get diagnosed correctly. Following a blood test that returned a positive result for the HLA-B27 gene (which is a common flag for people with AS), as well as visible edemas and joint damage showing in his MRI results, he was finally confirmed as having AS.
The physical side of AS was only part of the equation. I’m no psychologist, but I firmly believe that even though AS is a physical disease, it can have enormous mental repercussions.
I can only imagine how challenging it might be to live with a disease and not have a supportive person helping you cope with the frustration and confusion that go hand in hand with it. I can state this challenge from a very personal perspective because I’ve also been diagnosed with AS.
Even though I have no training as a caregiver, I rely on my empathy and compassion to make my partner’s life with AS happier by offering three kinds of emotional support.
I always listen, no matter how many times I’ve heard it before
AS pain sometimes seems to move around the body and change daily, often dramatically. Sometimes these changes are because of understandable things like exercise or diet, but often it’s a real puzzle to figure out why, for example, your shoulder blades are suddenly on fire.
Even this morning, Dave commented quietly that reaching up to get his bathrobe off the hook often made him wince in pain.
I always listen to my husband’s description of his pain without rushing him. I know this act of listening and acknowledging is important. Because AS symptoms aren’t linear, talking to someone about our changing experience really helps.
It doesn’t matter if I’ve heard a symptom described hundreds of times before, or if I don’t understand his body’s individual response to AS. What matters is that Dave feels validated and knows I care deeply about his daily well-being.
I support his passions
“You can’t put a computer racing simulator there,” one of my friends exclaimed in disbelief. “It’s one of the best rooms in the house!” She was staring, hands on hips, at Dave’s computer, which was hooked up to a steering wheel and pedals in front of a lifelike car seat in the middle of what’s supposed to be our dining room.
But I think hobbies and passions are more important than the looks of our house. In fact, I think having a few special activities that can put a big smile across your face are a top priority, especially when you’re dealing with a health problem that can cause depression.
I fully support and actively encourage Dave to take part in computer gaming, real-life mountain bike riding, and anything else he enjoys. He does the same for me, making a special space in the house for my painting supplies and enthusiastically supporting my interests.
I can tell that these simple but full-hearted acts of support for each other have made a big difference in our keeping a positive outlook. AS puts the clamps on joy sometimes, and it helps immeasurably when we can easily access an activity we like.
I don’t judge when he cancels plans
There are times to encourage someone to act, and there are times to accept a decision not to act agreeably.
I don’t ever try to force my husband to attend an event if he’s suffering AS pain or exhaustion. There’s no begging “oh pleeeeeease, just for a few hours?” or accusing “but we’ve had this planned for months!”
If Dave, or anyone else I care for, says “I’m not feeling up to it,” I believe them. Whether it’s canceling a day trip to the zoo or declining a fancy dinner at the last minute, I’d rather make an alternate plan we can enjoy together than hold a grudge.
I may not be the world’s squeeziest hugger or shower my loved ones with expensive gifts, but I try to show my love with heartfelt care. I believe these three kinds of support are quiet but powerful ways to create a more joyful life with a partner who has AS. If your partner has the disease, I hope you find these examples helpful in small but mighty ways.
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.
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George
Where have you been? Your husband is one lucky man! For many many years I would say that I believed I had an autoimmune disease. Nobody believed me. I exercised as much as I was able (a very lot) because it was the only thing that made me feel good. AS was firmly waiting in the wings for most of my life. Finally, it came on like a literal ton of bricks. I was astonished that even a disease could have such powerful symptoms. I encountered skepticism from people who knew me and when I got a diagnosis after a couple years, I still received doubt that it was correct. I absolutely knew it was. Maybe I would have been one of the doubters had it not been me with the disease. Life for me has included this difficult learning experience. Everything you just wrote is spot on, and healthy, including your understanding character.