Life with a chronic health condition such as ankylosing spondylitis can be filled with ups and downs. And it’s completely normal for it to take an emotional toll, as well as a physical one.
Ankylosing spondylitis is a form of arthritis that primarily affects the joints in the spine and can lead to acute back pain and stiffness, according to the Spondylitis Association of America (SAA). It can also lead to inflammation in the shoulders, neck, hips, hands, and feet, and in severe cases, it can cause sections of the spine to fuse.
Ankylosing spondylitis can be difficult, and one of the biggest emotional challenges is that symptoms can come and go without warning, says Erin Brandel Dykhuizen, a licensed clinical social worker and therapist in St. Paul, Minnesota, who specializes in working with people who have chronic pain, including ankylosing spondylitis.
“The unpredictable nature of it is really hard,” she explains. “You may have a plan or want to do something, and then depending on where your pain level is at that day, it may or may not be possible.”
This can sometimes cause people to feel like there’s no point in ever making plans, Dykhuizen adds.
In addition, it’s common to struggle with your identity if ankylosing spondylitis and its symptoms change what you’re able to do. “If a big part of your identity was being the person who gets everything done around the house and your pain prevents you from doing that, it can lead you to wonder, Well, who am I if I don’t have this role?,” Dykhuizen says.
You may feel similarly about work if your symptoms impact your job, according to Dykhuizen. This can make you question your self-worth and grieve your old self.
Shifting to a More Positive Mindset
The truth is, it’s still possible to have a rich and fulfilling life with ankylosing spondylitis. Consider these techniques that can help you feel in control of your life again.
1. Recognize that there are good days and bad days.
There will be days your ankylosing spondylitis symptoms flare and others when they don’t. Thinking that you can never make plans or do what you want is overgeneralizing the condition, says Dykhuizen. “In fact, there are days that are better than others. There are things that you can do,” she notes. Acknowledge and appreciate the good days. “The bad days are very easy to notice, but the good days sometimes go by unnoticed,” she adds.
2. Stay active when you can.
Exercise can not only lift your mood but also help you control pain and maintain mobility and flexibility, according to the SAA. A physical therapist can help you create an exercise plan that works for you, and the SAA has workout videos designed for people with ankylosing spondylitis.
3. Manage other stressors in your life.
In addition to ankylosing spondylitis, you still have the rest of your life to deal with. “We know that stress has a huge impact on the immune system,” says Dykhuizen. Doing your best to manage other sources of stress means they will be less likely to have an impact on your ankylosing spondylitis. “Make sure you’re taking care of yourself and not letting yourself feel guilty for engaging in the self-care you need,” she adds.
4. Try mindful breathing.
Deep, mindful breathing can be very helpful for people with chronic pain conditions, Dykhuizen says. “When people take the time to do it and commit to it, they find it makes a big difference in their pain level and then their stress level,” she explains. You can learn mindful breathing from a therapist or try a meditation app on your smartphone. Dykhuizen also says her clients find the Leaves on a Stream guided meditation on YouTube helpful.
5. Manage your emotional boundaries with others.
If your partner or family is upset about your ankylosing spondylitis or how it’s affecting their lives, that isn’t your responsibility. “You have to set that boundary with your partner and say, ‘I know you’re upset about this, too. You need to manage that. I can’t manage that for you,’” says Dykhuizen.
6. Know when to say no.
It’s common for people with chronic pain to take on too much, and then their bodies may tell them to back off. “Sometimes it’s looking at what your expectations are of yourself and what others’ expectations are of you,” Dykhuizen says. If others are expecting too much of you, let them know.
7. Learn to pace yourself.
It can be tough to accept that you may have limitations compared with what you were able to do before ankylosing spondylitis symptoms first appeared. But to protect yourself both physically and emotionally, it’s important to stop yourself before you get to the point of a flare. Dykhuizen works with her clients on time-based pacing, which means testing and determining how much you can comfortably do without pain and not going beyond that threshold. “What I work with in therapy isn’t so much learning how to do the pacing; it’s telling yourself it’s okay to do the pacing and accepting that you have the limitation,” she says.
8. Take stock of your values.
Although your life may look different from before you were diagnosed, it doesn’t mean you’ve changed fundamentally, according to Dykhuizen. She suggests looking at what your values are and how you want to live those out. “Really look at what you can take control of and what you want your focus to be,” she says. For example, if playing soccer with your kids or grandkids brings you joy, you can bring a chair to watch them play even if you aren’t able to join in.
Staying positive is a daily practice, but it’s good to remember that there’s still a lot you can control about how ankylosing spondylitis affects you. “Accepting your limitations is what actually will lead to a better and fuller life,” Dykhuizen says. “The sooner you can accept there are things that are going to change about your life, the more you can make those adaptations that are going to let you live that full life that you want to live.”