Caring For Someone With Ankylosing Spondylitis
If someone you care about has been diagnosed or is living with ankylosing spondylitis (AS), you may wonder how you can be supportive. The first thing is to educate yourself about the condition and how it can affect the body. While each individual can have a different experience with AS, it is a chronic condition that can significantly impact a person’s life and activities.
What is ankylosing spondylitis
Ankylosing spondylitis, which is pronounced “ankle-oh-sing spahn-dih-lie-tiss,” causes chronic inflammation in the joints which can lead to progressive joint damage. Most often, the joints in the spine and between the spine and the pelvis (sacroiliac joints) are affected, but some people also experience the pain and inflammation in other joints, like the shoulders, ribs, hands or feet. The chronic inflammation wears away at the bone, and the body overcompensates by building new bony tissue which can fuse the joints. The condition is very painful and causes stiffness, and regular activity and stretching are important to relieve some of the pain and stiffness. In addition to the joint symptoms, AS can cause inflammation throughout the body, affecting the eyes, the intestines, and the lungs. AS also causes fatigue, which can take a huge toll on a person’s life.1,2
The symptoms of AS typically begin in adolescence or early adulthood, in people under the age of 45.1 Because early signs of AS can mimic other conditions, many people suffer with symptoms and misdiagnoses for several years before receiving a diagnosis.3 This can delay effective treatment and be emotionally exhausting. When a diagnosis finally does come, it can bring a mix of emotions from relief at finally knowing what is causing the symptoms, to grief in coming to terms with a chronic, incurable condition.
How AS affects daily life
Imagine your day, starting with getting out of bed and getting ready for work or other activities. Think of how your joints, especially your back, is central to every movement you make, big or small.
Now consider what the person with AS is dealing with. The pain and stiffness of AS are worse in the morning after the body has been inactive during the night. They may wake up exhausted, as the pain in their body may make it difficult for them to get a good night’s sleep. In addition to medications, they have to schedule their day around physical therapy and stretching. Staying in any one position for too long becomes uncomfortable. And with a chronic condition like AS, there are many doctor’s appointments, insurance, and other financial matters to deal with.
AS is also a progressive disease, and over time, it gets worse. The speed and severity of progression are different for each person with AS, and living with the fear of progression can be extremely stressful.
How you can help someone with AS
Many of the symptoms are invisible, and it’s important to support your loved one in believing what they are telling you they are experiencing. Communication is always important in every relationship. Some people living with chronic conditions get tired of the question “How are you feeling today?” Talk to your loved one about how you can best help and learn if there are certain phrases or statements that aren’t helpful for them. Remember that AS changes over time, and you may need to check in as time goes on and ask what you can do to help.
Keep in mind that the person you love is still there – they are more than just their AS. Talk to them about topics other than AS and health and include them in your life. Be understanding if they can’t engage in certain activities depending on how they are feeling that day.