If you have axial spondyloarthritis (axSpA), you doubtless know plenty about its physical effects. (Lower back stiffness and pain plus loads of fatigue, to name a couple.) But you might not realize the toll it may be taking on your mental health. Fact is, people living with axSpA have a 51 percent higher risk of developing depression compared to people without the condition, and nearly 60 percent of patients say they experience psychological distress.
“When people have chronic health conditions, it really impacts all areas of their life. There are so many ripple effects” that can end up posing emotional challenges, says Kelly Forys Donohue, PhD, a clinical-health psychologist based in Frederick, Maryland. Physiological elements may also be at play: Some experts suspect that the inflammation caused by conditions like axSpA may affect neurotransmitter function in the brain, upping the risk for depression and anxiety.
No matter the underlying cause, finding ways to cope with the emotional side of your condition are important to help you feel your best—both mentally and physically. Here, experts share their best advice for how to navigate the challenges around the condition.
You Feel Like Your Quality of Life Isn’t What It Used to Be
With axSpA, it’s easy to have the sense your life has done a total 180. Physical limitations coupled with pain and fatigue often mean you just don’t have the capacity for daily activities you never used to think twice about. Around a third of people with ankylosing spondylitis (AS), an advanced type of axSpA, report feeling tired or lacking energy, and many say it’s a struggle to stand for long stretches, lift heavy objects, or even sit in a car or on public transportation.
This can take a big hit on your emotional well-being, especially when it’s stuff you feel you should be able to do (like haul your grocery bags up to your apartment) or deserve to do (like meet friends for a hike or a nightcap). “There can be a lot of deep shame or guilt for not being able to accomplish the things that you set out to do, or the things that your peers might be participating in,” says Nitasha Strait, PhD, LMFT, a health therapist and owner of the Better You Institute in Philadelphia.
“There can be a lot of deep shame or guilt for not being able to accomplish the things that you set out to do.” —Nitasha Strait, PhD, LMFT
And much as you might want to make these feelings just disappear, coping with them is a process. Donohue recommends finding ways to acknowledge what you’ve lost. “A natural grieving period can help people accept where they are,” she says. “Once you process the negative, you can jump to ‘What can I do?’”
One of Donohue’s favorite ways to begin processing grief is through release writing, which is basically writing down whatever raw stuff you’re feeling without worrying about censoring it. “Release writing allows us to process sadness, anger, and disappointment so we’re not carrying it around and holding it in our body,” she explains. Once you’ve clarified your feelings, you can take this a step further by talking them out with a friend you trust, or even a therapist.
You’re Not Able to Be as Active
Nearly two-thirds of people living with AS say their condition impacts their ability to participate in sports. That can be a tough pill to swallow if you used to be the kind of person who hit the gym every morning, or met friends for impromptu disc-golf games on the weekends.
Once you’ve given yourself the opportunity to grieve, you’ll have more mental space to think about the ways you can still be active.
Again, allowing yourself to grieve these losses will go a long way toward eventually feeling at peace with them, Donohue says. Once you’ve given yourself the opportunity to do that, you’ll have more mental space to think about the ways you can still be active. That’s important, since exercise is key for helping you stay as mobile and flexible as possible, per the Spondylitis Association of America.
Maybe you can’t run three miles before breakfast anymore. But you can still take a walk and savor that time spent outdoors with your thoughts. If you’re struggling to find comfortable ways to be active, talk with your doctor. They can refer you to a physical therapist, who can help you stretch and strengthen the muscles around your spine so you can do more of the physical activities you enjoy, Donohue says.
Your Symptoms Flare and Prompt a Vicious Cycle
It’s no secret that flares are physically draining. But they can also drag you down emotionally. “It’s easy for pain to take over and have that be your reality,” says Donohue. And that can quickly send you into a downward spiral.
It can be tempting to judge yourself in these moments. (“Why can’t I just get over it?” or “How come I can’t do a better job of managing my symptoms?”) Instead, “lean into those feelings and really try to understand them, the way you would if it were your best friend having a bad day,” Strait says. “You’d validate how they were feeling, and show empathy and compassion.”
It can be tempting to judge yourself in these moments.
This doesn’t mean you should be falsely optimistic—you wouldn’t blithely tell a friend who was flaring that they’d feel better tomorrow. More likely, you’d say that even though they felt like garbage now, they wouldn’t feel that way forever. “If you can understand that this sucks but it’s temporary, and that you can get through this, because you have evidence that you’ve gotten through other flares, your brain will buy that,” Donohue says.
You Feel Guilty Asking for Help
She also notes that having axSpA can change how you show up with people. You might not want to be that person who has to ask for help all the time, and yet your condition means that you are. Cue the stress and shame.
There might be a challenging task that you decide to do on your own, because it’ll bring you a lot of satisfaction or pride.
Coping with these feelings starts with learning to truly be okay with your limitations, whatever they may be, Strait says. Then you can start to ask for what you need without feeling guilty about it. In some cases, there might be a challenging task that you decide to do on your own, because it’ll bring you a lot of satisfaction or pride. Other times it might be worth accepting the fact that you need extra support and identifying whom you feel comfortable getting it from, she explains: “It’s a regular reflection of Where am I at right now?”—and then adjusting as needed.
You Find Navigating Romantic Relationships Difficult
Every time you meet a new potential partner, there’s the looming question of when you’ll bring up your axSpA. TBH, it really comes down to what you feel comfortable with. “Some people will post it right on their dating profile, while others wait to bring it up if they think things are going to progress,” Donohue says.
TBH, it really comes down to what you feel comfortable with.
Whenever you do decide to broach that convo, be honest, while giving the other person space to take everything in. Donohue recommends saying something like this: “I really enjoy spending time with you, and I want you to know that part of my life is dealing with this challenging condition called axial spondyloarthritis. It affects my life in _____________ way. If you want to know more, I’m happy to talk about it. But we don’t have to do a deep dive right now.”
As for sex? Whether it’s with someone new or a long-time partner, “it’s about talking with your partner about your green lights and red lights in that moment,” says Strait, since your capacity might be different on different days. If your body feels like it can be sexual in a way that you and your partner want, go for it. If not, you can have a conversation about what’s possible today. “Maybe my body can’t do what I envision as ‘normal,’ but can I cuddle? Can I receive something?” she says.
The Bottom Line: Having axial spondyloarthritis can sometimes feel like an emotional roller-coaster. While there’s no right or wrong way to manage the ride, leaning into what you’re feeling can often be more helpful than you might think. “When you notice something, give it space to be in it, and explore why you’re feeling that way,” Strait says. “When you can handle smaller emotions around your AS, they won’t become so large that they feel uncontrollable.”
Marygrace Taylor
Marygrace Taylor is a health and wellness writer for Prevention, Parade, Women’s Health, Redbook, and others. She’s also the co-author of Prevention’s Eat Clean, Stay Lean: The Diet and Prevention’s Mediterranean Kitchen. Visit her at marygracetaylor.com.
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