When a Husband and Wife Both Have Ankylosing Spondylitis
A double diagnosis proves shocking, and challenging, for this young couple
Life’s good at throwing curveballs, and we never saw this one coming. It was a pretty big shock when my husband, Dave, and I were both diagnosed with ankylosing spondylitis (AS) within the space of two years.
At that time in 2020, things were looking pretty grim. We were in our mid-to-late 30s and had two young and very energetic children here in Australia. I’d recently been diagnosed with AS, but Dave was having serious health issues, and none of the medical professionals could figure out what was wrong.
Decades till a diagnosis
Dave and I first met at university, and since his early 20s, he’s had a horrifically “crunchy” back. If you lay a hand on his shoulder as he’s moving it in a circle, it’ll feel like you’re touching some kind of bone-crushing machine.
He was in constant discomfort from his neck, back, chest, glutes, and hamstrings. In 2014, he was misdiagnosed with piriformis syndrome, which causes pain or numbness in the butt, hip, or upper leg. It’s no wonder he was always groaning after standing up for too long, squirming around on hard restaurant chairs, and performing never-ending stretches. But he wasn’t diagnosed correctly for almost two decades — a story that sadly seems common in the ankylosing spondylitis community.
‘Have you been in a car crash?’
In his mid-30s, Dave did a seemingly innocent activity and escalated his condition from manageable symptoms to serious pain. At a friend’s pre-wedding party on a sandy Australian island, he carried the group’s heavy cooler of beers around for the day. That incident was the beginning of violent sacroiliac joint pain that left him lying on the floor. My heart was breaking, watching his agony.
A long series of visits to doctors and the physiotherapist did nothing to help him, X-ray guided cortisone injections to the hip joint didn’t help the pain, and yoga was making the issues worse. Six Voltaren (diclofenac) tablets a day were like a silver bullet allowing him to function, but otherwise he couldn’t walk the 15 steps from our bedroom to the lounge without a walking cane.
To our relief, we found a new doctor who was proactive in finding answers, sending my husband for an X-ray and MRI of his hips and lower back. The specialist looked at his pelvis imaging and asked, “Have you been in a car crash? Or a serious accident?”
No, he hadn’t. A subsequent blood test was positive for the genetic marker HLA-B27, which suggested that the anomalies visible on the MRI were caused by ankylosing spondylitis.
After more than 15 years of confusing symptoms, my husband was finally sent to a rheumatologist and diagnosed with AS.
Chronic disease makes family life challenging
I’ll never take simple movements and the ability to perform basic tasks for granted again. With our double diagnosis and worsening symptoms, our normal family life shimmered out of reach like a mirage. We wondered how on earth Dave would commute to work in the city every day. The daily bike ride, train trip, and walk through the city seemed a Herculean task for a person who couldn’t walk 20 meters (about 22 yards).
How would we navigate the demands of parenting children ages 2 and 5 with no family nearby to help? Young kids are wonderful, but our two are whirlwinds of activity. I vividly recall looking at car seats and highchairs as my arch-nemeses, knowing my inflamed spine would pay the painful price from lifting a squirming 18-kilogram toddler (about 40 pounds).
How would we look after each other when our health was failing quickly? We knew we’d have to battle AS with all of our spirit. We’d have to pour all of our love into each other, even if we couldn’t always physically help each other.
We became stronger than ever
Our joint journey battling AS has taught me that you shouldn’t give up on yourself or your partner, even if things seem dire. Despite the double diagnosis, we’re never going to stop looking for ways to feel better and support each other.
While battling this disease, we’ve discovered ways to help each other. We’ve found how to improve sleep, have adventures, feel happy, and reduce pain through the no-starch diet. There are still plenty of challenges ahead, but I’ve learned that we can do far more for ourselves than I thought possible.
Keep fighting for your health
My message to anyone with AS symptoms is not to be afraid to advocate for yourself. You can’t assume the medical system is going to whisk you along the path to a perfect solution. Ask your doctor questions. Find a new doctor if you need to. Keep researching. Keep challenging your medical professionals, and please don’t give up until you have the answers you need.
It takes a lot of strength and determination to keep searching for help, especially when you’re exhausted and someone is telling you “no,” “it’s in your head,” or “I’ve never heard of that symptom.” But I promise, even the smallest breakthrough makes it worth the fight.
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.
What an awesome column this is proving to be ! LOVE the blend of personal info, facts, and a nice leavening of humour. I learned so much after just the first 2 articles- can't wait to read more :)
Hi Jean, thanks for the lovely comment! I appreciate you following along on the journey.