“People are a beehive of emotions,” says Kenneth J. Doka, PhD, a senior vice president of grief programs at the Hospice Foundation of America. Among the emotions a person with ankylosing spondylitis might experience is guilt. You may feel guilty for simply having the condition in the first place. Or guilt for being “a burden” or not having the energy to do all the things you “should” do. You may blame yourself for any limitations you may experience, for not being the parent or spouse you feel your family deserves, or for any number of other things that are beyond your control. Part of the challenge with ankylosing spondylitis is that many people have never heard of the condition or they can’t tell if someone has it, says Hillary Norton, MD, a rheumatologist in Santa Fe, New Mexico. Dr. Norton herself was diagnosed with ankylosing spondylitis about 25 years ago. “When ankylosing spondylitis is explained as back pain, that really doesn’t explain everything that goes along with the disease,” she says. “It’s so much more than back pain. Family members might not understand.” If you find yourself struggling with your emotions, here are some things you can do.
1. See a Mental Health Professional
A therapist, social worker, or other mental health professional can help you find strategies to better handle the emotional challenges of living with ankylosing spondylitis. There are a number of treatment options available, from talk therapy to medication. Your doctor should be able to recommend a counselor or therapist who can help. Difficult emotions are very common in people with chronic conditions. Talking to others can help you feel better physically, too. A study from the Arthritis Foundation analyzed the insights of more than 27,000 people living with arthritis. Those who have someone to talk to or connect with were twice as likely to say they had higher levels of physical function than those who said they did not and felt alone.
2. Join a Support Group
If you don’t feel comfortable discussing your emotions with friends and family or you feel like they just don’t understand what you’re going through, finding a group of people who know what it’s like to live with ankylosing spondylitis can be very helpful. Many options are out there, both in person and online. Sometimes someone facing similar challenges can be the best source of tips on how to cope. Dr. Doka recalls being at a support group for people with arthritis where one older woman complained that she couldn’t order steak in a restaurant anymore because it was too difficult to cut. “Ask them to cut it in the kitchen,” recommended someone in the support group. Joining a support group can help boost your mood, improve your coping skills, and decrease negative emotions like resentment and hopelessness, according to the Arthritis Foundation. In addition, those with arthritis who have someone to talk to or connect with report pain levels 16 percent lower than those who say they feel alone or isolated. RELATED: 5 Ways to Get Involved in the Ankylosing Spondylitis Community
3. Ask for Help When You Need It
Don’t set yourself up for failure by trying to do too much. You may end up only feeling guilty or frustrated if you’re not able to cross everything off your to-do list. This is especially true when your condition flares and you’re feeling pain or fatigue. “We want to feel tough, like we’re battling this disease,” Norton says. “So asking for help can often feel like a sign of weakness.” Put those thoughts aside and ask for help when you need it.
4. Keep a Gratitude Journal
This idea has spread widely in recent years. It may seem difficult to find things to be positive about when you’re dealing with feelings like anger or frustration. But taking just a few minutes each day to list something you are grateful for — even something small — can lift your mood and make you feel better about your life.
5. Adjust Expectations of Yourself
You don’t need to be perfect. Repeat: You don’t need to be perfect. Strive instead to do the best you can in taking care of yourself — by exercising, eating right, getting enough sleep, and not smoking. Don’t beat yourself up if you fall short now and again. Although you can help manage your pain and inflammation, some things about your condition are beyond your control. “People put a lot of pressure on themselves to identify what caused a flare,” Norton says. “We’re not always going to figure it out. You have to cut yourself a little bit of slack.”
6. Move to Help Your Mindset
Change up your view. Exercising has been shown in many clinical studies to reduce disease activity and improve function. But even just getting out and walking a pet dog or joining a club that relates to interests such as art or sports can help you adjust your perspective if you find that ankylosing spondylitis is weighing heavily on your mind. Additional reporting by Cheryl Alkon.
