6 Ways to Support Your Partner With Ankylosing Spondylitis
Real talk from people with AS about how their partners always have their back.
When you learn you have ankylosing spondylitis (AS), a systemic inflammatory condition that primarily affects your spine, the diagnosis can be difficult on you—and your partner. “When describing what it’s like having AS, the word ‘challenging’ is an understatement,” says Roselyn Tolliver, 54, of Merced, CA, who was diagnosed in 2018 and has been married for a decade. “That’s why it was so hard to explain to my husband that when you have AS, your pain never goes away.”
And when you’re living through something like that, being able to rely on your partner is everything. That said, it’s not always easy to know how to do this. We’ve got you: If your partner was recently diagnosed with AS, you can rely on this time-tested advice from three couples who know what works. You’ll be on your way to earning “Partner of the Year” in no time.
Be Kind to Your Partner—Especially in the AM
For many people living with AS, mornings are punctuated by lots of pain, especially if a fitful night’s sleep just occurred. “When I wake up, I remain in pain for several hours,” says Regan Reynolds, 39, of Raleigh, NC, who was diagnosed with AS in 2002 and has been married to her husband, Jason, since 2006. “It takes a lot to get going in the morning and my husband is always there to help me no matter what I might need.”
Advocate for Your Partner
This type of support can take many different forms but, for Jed Finley, 38, of Lake St. Louis, MO, who was diagnosed with AS when he was 12 years old and currently experiences such AS symptoms as neck pain, shoulder pain, fatigue, and brain fog, he is especially appreciative of his wife of 14 years, Brighid. She is always the first one to speak up for him at family dinners. “She’ll say things like ‘Hey, Jed can’t eat that,’ when someone serves something with dairy and sugar since that causes a lot of inflammation for me,” he says. “I can’t fully express how much that means to me.”
Remember That Listening Is Often the Best Medicine
If you like to talk through a problem, it helps to have a partner who is a good listener. “I rely on my husband not to fix things but to help me process what I’m going through,” Reynolds says. Her husband also lives with chronic illness—cerebral palsy—and he uses a wheelchair. “He understands what I mean when I say ‘I’m not feeling well enough to go out.’ He’s the first to say ‘Let’s order in.’ He always offers a different solution to whatever we’re going through and I really appreciate that.”
Show Your Love by Showing Up for Doctor Appointments
When Reynolds has a medication change or a challenge, she finds it extra helpful when her husband accompanies her to her rheumatologist appointments. “When my current medication is failing or beginning to fail or I’m at the end of my options, it’s a very stressful time,” she says. Having her husband along for appointments means he can be clear-headed and bring up things he’s observed in her since the last appointment. “For example, I have this random finger that swells up,” Reynolds says. “I wouldn’t have remembered to discuss this with my doctor recently if my husband wasn’t with me at my appointment.”
Expect Flares—and be Kind to Each Other During Them
If you’re having a flare, you want your partner to be prepared—and never take any outburst personally. “I get really grumpy when I’m in pain,” Finley says. “When I have a pain flare, I come across as being angry with the world and I never want my partner to think she did something wrong.” To prevent any hurtful feelings, keep communicating, Finley says. And this works both ways. If you’re the one with AS, “the best thing you can do is to update your spouse and say ‘I’m having a really bad day today. I’m sorry if I come across as grumpy,’” he says. “Talking about this is way better than blowing up.”
Be on the Lookout for New Ways to Spend Time Together
Ask Tolliver and she’ll tell you that she and her husband used to love their weekly golf outings. Unfortunately, as her AS flares began happening more frequently, the couple had to discontinue their trips to the links. “This was something the two of us loved doing together but the AS didn’t allow for it.” Recently, the couple discovered that they could play miniature golf together instead, and Reynolds noticed that she could play a relatively pain-free round. “I want people to know that with AS you may not be able to do everything you once did,” she says. “There was a grieving process for the life I had lost but my husband helped us find ways to continue to be fun-loving people—and spend time together, too.”