It can be tough to live with a painful, lifelong condition like ankylosing spondylitis. You may have trouble working, or doing activities you’ve always enjoyed. You may feel like friends, family, and co-workers just don’t get it.
It’s easy to feel down and overwhelmed. People who live with a chronic condition are more likely to have depression or anxiety. But support is out there if you know where to look and how to ask.
Start With Your Doctor
Tell your doctor all the symptoms you feel and how they affect your quality of life. It may not be possible to get completely pain-free, but they may be able to help you feel better than you do right now. Here are some things to discuss:
- Should we reevaluate my treatment? Is there a new or stronger medication that might be worth trying?
- Would a specialist or a physical therapist be helpful?
- What can I do on my own to help myself feel better?
- The unknown can be very stressful. If “what-ifs” are making you worry, it may ease your mind to talk through things like possible complications and treatment side effects.
If normal worry becomes something more serious, your doctor may be able to prescribe medication or refer you to a professional counselor or therapist. You may need to be treated for depression or anxiety if you have:
- Feelings of worry, fear, or sadness that don’t go away and keep you from living normally
- Problems concentrating
- Sleep problems, like insomnia or being very sleepy
- Restlessness and crankiness
- Physical symptoms, like headaches, stomachaches, or a racing heartbeat
- Thoughts of harming yourself
Drugs for anxiety and depression may impact your AS treatment. Make sure your entire health care team knows every medication you take.
Connect With a Community
Millions of people live with chronic pain. It can help to connect with others who understand how you feel. You can get emotional support, but also practical help, like tips for managing your health challenges. And sharing your experience may help someone else, which is a great feeling.
There are lots of ways to connect. The websites of the Arthritis Foundation and the Spondylitis Association of America are good places to start. Your doctor may know about other resources in your area. Check out:
- Support groups. These can be in-person or virtual. In addition to meeting people with AS, you may hear from a guest speaker or take part in an educational webinar.
- Blogs, message boards, and online forums. There are many places online to read other people’s stories and post your own, and have conversations about living with AS. Be careful about taking medical advice from someone you don’t know. Confirm what you hear with your doctor.
- Social media. You can find support groups plus information and news from advocacy organizations on platforms including Facebook and Twitter.
- Getting involved. It can feel empowering to do something to help the cause, and you may make some new contacts. See how you can help with fundraising, advocacy, or raising awareness. You can also take part in a clinical trial or other scientific research.
You may need to try more than one group or activity to find a good fit. And remember: Be sure the people you connect with are helping, not just commiserating.
Help From Friends and Family
The people closest to you can be a great source of support, even if they don’t know exactly what it’s like to be in your shoes. You may have trouble asking for help or accepting help. No one wants to be a burden to their loved ones. But remind yourself: That’s what people in caring relationships do.
It’s important to have honest conversations where everyone can express their concerns and expectations. Try these tips for specific situations:
- At home: Work out how you divide the housework. Figure out which chores you can manage, and ask your partner or other family members to pick up the ones that are more physically challenging.
- At work: You may prefer to keep your medical information private. But it can help to tell your co-workers what you’re going through. If they know why you need accommodations, like frequent breaks or a special chair, they may be more understanding.
- In your social life: Be honest about any limits you have, and don’t feel guilty. If you have to cancel plans because you don’t feel well, say so. But keep trying. Isolating yourself will only make you feel worse.
If people in your life don’t support you, it may be time to broaden your social circle. Get involved in activities you enjoy – take a class or join a club. Look for people who are positive and understanding.
Self-care is critical to feeling your best when you have ankylosing spondylitis. Keep in mind these ways to support yourself:
Relax. Stress increases inflammation, which can make your AS symptoms worse. Try relaxation techniques like meditation and deep breathing. Or just treat yourself to something you enjoy, like time outdoors or your favorite music.
Exercise. Physical activity is an important part of your treatment plan. Regular exercise can lessen your pain, help you stay flexible, and keep a healthy range of motion in your joints. It releases chemicals in your brain that make you feel better, and lowers your levels of stress hormones. Talk with your doctor or a physical therapist about what kinds of exercise will be most helpful, and if there’s anything you should stay away from. Good options may be yoga or a low-impact workout like swimming. Be sure to pace yourself and take breaks.
Sleep. This is a big issue with AS. The pain gets worse when you aren’t moving, so it may wake you up at night. Or you may have trouble getting comfortable enough to fall asleep in the first place. Lack of sleep can cause physical and emotional problems. Try these tips for getting better sleep:
- Sleep flat on your back, or with a thin pillow, to keep your head and spine aligned correctly.
- Get a supportive mattress.
- Consider an adjustable mattress to take pressure off your back.
- Practice good sleep hygiene, like keeping your bedroom dark, cool, and quiet, and following a relaxing bedtime routine.
Eat well. A healthy diet can help you feel better in general and may improve some AS symptoms. Certain foods, like those featured in the Mediterranean diet, can reduce inflammation. You can also eat to strengthen your bones, and to protect yourself from some drug side effects. Eating well may help you get to a healthy weight, which puts less stress on your joints.
Don’t smoke. It makes AS worse and sets you up for lung complications.
Stay positive. Research shows that if you have negative emotions, you feel more pain. Treat yourself with the same kindness and compassion you’d show a friend.
Photo Credit: Edwin Tan / Getty Images
Spondylosis Association of America: “Mental and Emotional Health,” “Connect With Others: You Are Not Alone,” “Advocacy and Spondylitis,” “Research,” “Exercise,” “Tips For Sleeping Better With Spondyloarthritis,” “Diet's Effect on Spondylitis Symptoms.”
Mayo Clinic: “Ankylosing spondylitis.”
Arthritis Foundation: “Questions to Ask Your Doctor: Axial Spondyloarthritis,” “Emotional Self-Care During Tough Times,” “Treating Depression and Anxiety in Arthritis,” “Build a Support System to Fight Arthritis,” “Find Your Yes,” “Coach Yourself Through Tough Times With Arthritis,” “Don't Blame Yourself for Your Arthritis,” “How Stress Affects Arthritis,” “Axial Spondyloarthritis,” “Adjusting to a New Axial Spondyloarthritis Diagnosis,” “The Emotion-Pain Connection.”
Cleveland Clinic: “Ankylosing Spondylitis (AS).”
CDC: “Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults – United States, 2016.”
National Axial Spondyloarthritis Society (U.K.): “Managing your axial SpA (AS) at work.”
National Institute of Arthritis and Musculoskeletal and Skin Diseases: “Ankylosing Spondylitis.”
American College of Rheumatology: “Spondyloarthritis.”