Adjusting to a New Axial Spondyloarthritis Diagnosis
Care for your emotional and physical health as you manage axial spondyloarthritis (axSpA), including ankylosing spondylitis (AS).
Axial spondyloarthritis (axSpA) is almost always diagnosed in young adults – people just starting out in life. You’re in school, planning families and building careers. Learning you have any chronic illness is difficult. But it can be even harder when “you’re supposed to be at your peak,” says a 24-year-old nurse with ankylosing spondylitis (AS). Even though you may feel overwhelmed, know that you are not alone. You can live a happy, full life with axSpA.
A diagnosis of axSpA means some things in your life may have to change. If your job involves long hours sitting at a computer or building houses, you may have to make adjustments. Some sports may not be possible, but others can be great for you. And the way you interact with family members may need adjustment.
Although it’s not easy, try to accept the changes and make them part of your life. If you have a desk job, ask an occupational therapist to evaluate your workplace. It’s likely you can tweak things so sitting’s less painful. A physical therapist can guide you to the right types of exercise and sports. If problems arise that you and your family can’t resolve, consider seeking the help of a social worker or counselor.
Plan for Pain
Managing pain is a big part of living with axSpA. The chief thing you can do is follow your treatment plan. But flares happen. And you should have a strategy for when one does. Many people use ice packs, exercise, stretching and yoga. Others rely on acupuncture, massage and meditation. You may find that what works one time may not work the next. Have several options at the ready when you need pain relief.
Practice Emotional Self-Care
A phrase you may hear from other people with any long-lasting illness is, “You are not your disease.” This can be hard to believe when you don’t recognize your own body. But you’re the same person you always were; you just have new challenges. It’s important to remember this when you feel overwhelmed or discouraged.
- Your disease does not define you.
- Acknowledge and accept your feelings, but try not to let them weigh you down.
- Ask for help when you need it. If you don’t want help, it’s okay to say “no.”
- You may not be able to fully control your disease, but you can control how you think, react and feel about it.
Build a Support Network
Personal relationships can give you a boost when you’re feeling low. This may mean friends and family. But sometimes the best support comes from people who also have axSpA.
You can connect with people who “really get it” through an online community or a local support group. You can find one through The Arthritis Foundation’s Live Yes! Network. Online forums and support groups can buck you up when you need it. Members also give you tips about life with axSpA that they have learned through trial-and-error.
A positive outlook can actually change your brain. Pain-blocking chemicals are released when you feel upbeat. Negative thoughts do the opposite, making pain more intense. Try to focus on what’s right with your life instead of what’s wrong. It can make a real difference.
Stay in the Know. Live in the Yes.
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