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Explaining the Invisible Pain of Spondylitis

Medically reviewed by Ariel D. Teitel, M.D., M.B.A.
Written by Nyaka Mwanza
Posted on July 8, 2021

Understanding Spondylitis Pain | Break Down | Get Support

Life with spondylitis, an inflammatory disease, can mean living your days in constant lower back pain as your immune system attacks your joints and spine. Unfortunately, because your outward appearance may not reflect the physical pain happening in your body, your friends, family, co-workers, and other observers might think you’re perfectly fine. One survey found that 54 percent of people with ankylosing spondylitis felt that friends and family did not understand their chronic illness.

Spondylitis and chronic pain can take a toll on your overall wellness and quality of life. A strong network of support is one way to get the help you need when living with spondylitis. Because the symptoms of spondylitis are often invisible, it’s important to be able to discuss your condition with the people who love you most or those who will see you most often.

Understanding Spondylitis Pain

Spondylitis, a type of arthritis, is an autoimmune disease, which means that the immune system mistakenly attacks its own tissues and causes inflammation. Spondylitis inflammation primarily affects certain parts of the spine and sacroiliac joints. Over time, chronic inflammation in the spinal joints and tissues causes stiffness and pain. In severe cases of spondylitis, the bones in the spine fuse together (ankylosing spondylitis).

Spondylitis tends to affect young people, but it may develop in people of any age. Approximately 80 percent of people with ankylosing spondylitis experience their first symptoms before age 30, according to Johns Hopkins Arthritis Center. “I started having symptoms when I was 16. Chiropractors and more chiropractors until my early 30s. Then I just quit,” said a MySpondylitisTeam member who was finally diagnosed at age 43.

The primary symptom of spondylitis is often joint pain, especially inflammatory back pain and severe pain in the hips, neck, and spine. “I can barely walk sometimes. It hurts to just sit up or lay down,” explained a MySpondylitisTeam member. Inflammation and pain can affect other parts of the body as well.

Where and how the pain is experienced depends on where in the body the disease-related inflammation is active. Spondylitis pain tends to get worse during periods of extended inactivity, such as overnight during sleep, and improves when you’re more physically active. One MySpondylitisTeam member described it as “debilitating pain, especially in the morning.”

Breaking Spondylitis Down for Others

The National Pain Foundation has conducted focus groups showing that lack of validation — defined as “a lack of belief the patient was suffering what the patient said they were suffering” — was the most significant challenge faced by people in pain. This lack of understanding oftentimes contributes to feelings of isolation and hopelessness for people living with an invisible illness and suffering from chronic pain.

Explaining spondylitis to other people may be as simple as explaining the causes and symptoms — but defining the pain, which can be a subjective experience, is especially difficult. Once you’re able to talk about your spondylitis pain with the people closest to you, they’ll be better able to understand what you’re going through and how they can support you.

Quantify Your Pain

A pain scale is a numerical scale from zero to 10 often used to help quantify someone’s pain when they’re explaining it to health care providers. Zero means you are experiencing no pain, 1 to 3 is considered mild pain, and a score between 4 and 7 indicates moderate pain. If you’re feeling severe pain, the score would be 8 and higher.

Qualify Your Pain

Although a number scale can be generally helpful, it may also help to describe your pain in more detail to help people get a better understanding of your experience. For example, try to describe your pain relative to the worst pain you’ve ever experienced to add some perspective. Others may find it helpful if you contextualize your pain:

  • Is the pain constant?
  • When is the pain worse versus better?
  • How does your pain respond when you move around?
  • Does your pain affect your ability to function?
  • Does your pain prevent you from doing activities you used to do?

From burning and stabbing to throbbing and aching, there isn’t just one pain sensation. MySpondylitisTeam members have talked about their diverse experiences with chronic spondylitis pain. It may help to borrow some of their explanations.

  • “I suffer from agonizing popping and pain in my neck, and I often end up in tears. My back pain leaves me in absolute agony and feeling many years older than I am.”
  • “Sometimes, I’m barely able to move and get about … the pain gets so bad it makes me throw up.”
  • “I have very few discs left and spurs on my spine. My hands have hard knots in them and they hurt all the time. I feel like I’m going to explode most of the time.”
  • “My arms feel like they have been asleep and that tingling feeling runs down them.”

State Your Needs Clearly

Asking for help can be difficult. If your spondylitis pain becomes particularly bad, you may need more support than usual. One way to make it easier for both you and your family and friends is to identify specific ways people can support you when your pain is worse than usual. For example, you could ask someone to pick up groceries, help with child care, or accompany you on a walk.

Talk With Others Who Understand

When others just don’t seem to get it despite your best efforts, take comfort in knowing there are people out there who understand your pain. MySpondylitisTeam is the social network for people with spondyloarthritis. More than 66,000 members come together to ask questions, give advice, and share their experiences living with spondylitis.

How have you explained your invisible pain to others? Share your tips in the comments below or start a discussion on MySpondylitisTeam.

Posted on July 8, 2021
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Ariel D. Teitel, M.D., M.B.A. is the clinical associate professor of medicine at the NYU Langone Medical Center in New York. Review provided by VeriMed Healthcare Network. Learn more about him here.
Nyaka Mwanza has worked with large global health nonprofits focused on improving health outcomes for women and children. Learn more about her here.

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