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Coping with Ankylosing Spondylitis

Living with ankylosing spondylitis (AS) comes with a variety of challenges and difficulties to navigate. Some of these considerations are described below.

Misdiagnosis and delayed diagnosis

Receiving a diagnosis of AS may come with a mix of emotions, from relief to grief. Because the early symptoms of AS (like low back pain) are common, they may not be recognized as AS. Many people have to go through a variety of doctor’s visits for several years before finally receiving a proper diagnosis. The struggle to get to a diagnosis may mean hearing it’s AS comes with a sense of relief, as finally there are appropriate treatments that can help.

However, the diagnosis may also come with grief. Currently, there is no cure for AS, and while there are medications that can help manage symptoms, AS does impact a person’s daily life. Knowing it’s a progressive condition can also be overwhelming, bringing worries and despair. In some people, the emotional strain of AS may lead to mood disorders, like depression or anxiety. If you are recognizing symptoms of depression or anxiety, talk to your doctor and ask for help. However, with current medications, it is not unreasonable to expect that remission is possible. Many people with AS are able to live a normal life while on medication.

Emotional well-being and stress management

Dealing with the chronic nature of AS takes a toll not just on the physical body but also on a person’s mental and emotional health. While stress doesn’t cause AS, stress can worsen symptoms like inflammation and chronic pain. Common ways of managing stress include leaning on people for social support, engaging in physical activity or meditation, and using breathing techniques to calm the body and mind.

Work and AS

AS can have a significant impact on a person’s work life, and some people with AS find that they must make adjustments to the type of work they do or to the workplace itself. Because AS causes pain and stiffness, many people find they need to move around throughout the day. Sitting in one position for too long can be excruciating. Ergonomic adjustments can help, as well as flexibility in work hours. While many people with AS continue to work for many years with their disease, for some people the disease progresses to the point where work is no longer an option and they must apply for disability.

School and AS

For younger people with AS, including teens with juvenile AS, school accommodations may be necessary. Public schools have programs, such as a 504 plan or an Individualized Education Program (IEP), which can specify special support for the student with AS to help them succeed in the school environment. The types of support covered by these plans vary and may include physical accommodations like allowing for stretching or snacks, assistive technology, or flexibility in timing for tests or homework.

Getting support

Everyone needs help sometimes. When dealing with a chronic condition like AS, you may need to reach out for support from family, friends, a therapist, or others with AS. When talking to your friends and family, share with them what you’re going through and ask for specific ways for them to help. It can be helpful for others who want to help, but don’t know how to help, to receive specific information on what you need, as well as what is not helpful to you.

Many people find it comforting to talk with others with AS who understand first-hand what it’s like to deal with the disease. Whether through in-person support groups or online communities, hearing others’ experiences and finding compassionate people to listen to your story can provide comfort that you’re not alone.

Some people also may find they need professional help, such as meeting with a psychologist, counselor, or social worker. Ask your doctor for a referral, or get recommendations from friends or family. It’s important to find the right fit in a counselor or therapist, and you may need to try more than one to find one who feels comfortable.

Written by: Emily Downward | Last reviewed: February 2019