As a chronic progressive condition, ankylosing spondylitis can erode your self-confidence. Find out how to live well, emotionally and physically.
Living with a chronic condition like ankylosing spondylitis, an inflammatory form of arthritis that can cause pain, limit mobility, and lead to changes in appearance, can take a toll on your self-esteem and lower your quality of life. In fact, about two in three people with ankylosing spondylitis have low self-esteem, according to data published in 2013 in the Annals of Rheumatic Diseases. What’s more, when you have low self-esteem, you’re also more likely to have more active symptoms of ankylosing spondylitis and depression or anxiety, the study found.
For Crystal Balentine, 43, of Horn Lake, Mississippi, the erosion of her self-esteem began in her teens, when she started experiencing pain in her back and legs. At the time, her symptoms were chalked up to growing pains. Despite worsening pain and the onset of digestive symptoms in her twenties, she didn’t get a formal diagnosis until she was close to 40 years old. Until then, she was told repeatedly that her symptoms were due to anxiety. She had to stop working, and soon, she and her husband were facing a tight budget — a problem that was compounded by the fact that Balentine was unable to participate in certain activities with her family. In 2012, she finally learned that she had ankylosing spondylitis. Yet those years of not knowing why she was in pain had taken a mental and physical toll on her.
“[I felt ashamed] because I had gained weight, couldn’t do the normal things I used to do, and had to rely on someone else to take me to appointments,” she says.
Now that she has her diagnosis, she’s working on rebuilding her sense of self, in part by telling her story to build awareness about ankylosing spondylitis.
How to Shore Up Your Self-Esteem
If you have ankylosing spondylitis, take these steps to protect your inner self:
Learn more about ankylosing spondylitis. “You need to learn what ankylosing spondylitis is, what it can do, and what you’re battling,” Balentine says. Educating yourself so you better understand ankylosing spondylitis can help you better manage the condition and continue to lead a healthy and active lifestyle.
Take a leading role in your care. “Having an active role in a treatment plan that suits you and being supported by medical staff and family can help boost your self-esteem,” says Steffi Brown, 26, of Roscommon, Ireland. Brown’s pain symptoms began when she was 20, but she wasn’t diagnosed with ankylosing spondylitis for another three years. Even then, Brown says that no one told her what ankylosing spondylitis was or talked to her about the full range of treatment options. “That feeling of being out of control hugely knocks a person’s confidence and self-esteem,” she says. Do your own research on ankylosing spondylitis treatments and how they work so you feel comfortable talking about your options with your care team and discussing any issues or concerns you may have.