Ankylosing wha…? It’s bad enough being diagnosed with a chronic disease you’ve never heard of let alone one you can barely pronounce. But if you’re one of the 3 million Americans living with ankylosing spondylitis (AS), a form of inflammatory arthritis that affects the spine, take heart: It is possible to enjoy a full, active life.
What’s more, the fact that you have a diagnosis means you’re already moving in the right direction. On average, it takes nearly nine years from their first flare for people to find out they have AS, according to a study in The Journal of Rheumatology.
A big reason? “AS often affects young, seemingly healthy people,” says Rachel Tate, DO, a rheumatologist in Hollywood, Florida, who adds that men and women are affected in near equal numbers despite a common misconception that AS is a “man’s disease.” And since low back pain (which is very common) is usually someone’s main complaint, doctors may mistakenly chalk it up to an injury or other temporary strain.
That’s basically what happened to Brooklyn-based visual artist Sal Marx, 26. They were in their early teens — playing on lacrosse, basketball, and soccer teams — when their symptoms, primarily neck pain, first struck. Sal was initially diagnosed with a pain syndrome, put in a neck brace, and told it wouldn’t last long. But at age 16, they found out it wasn’t a passing pain syndrome — it was AS. “I had no idea what it was and didn’t understand what it encompassed. I was even hesitant to accept it as my correct diagnosis,” says Sal.
Eventually, they started a biologic treatment — a weekly injectable — that they continue to this day. But that’s just one part of Sal’s AS management plan. The other? A network of friends and loved ones they regularly turn to for support, and that’s a key advantage: Studies in the journal Chronic Illness and elsewhere show that people who can rely on family and friends do far better at managing chronic illness than those going it alone.
If you’ve been diagnosed with AS, you may be wondering how to break the news and explain the disease to others. Says CreakyJoints member Elizabeth K., “I felt excited and nervous to tell my family. I didn’t know how they would react.”
So what should you say? We’ve gathered expert and patient strategies that will make the conversation easier and help you get the support you need.
Set the Stage and Allay Fears
Pick a time when a friend or loved one can give you their full attention and the conversation can be unhurried. Say something like, “I recently got some medical news I’d like to tell you about. Don’t worry, it’s not life-threatening, but I need you to know.”
Another option: “Invite loved ones to come to your next doctor appointment,” advises Dr. Tate. “We’ll have a discussion about the trajectory of the disease and explain the symptoms from a medical standpoint.”
If you’re telling a child about your AS diagnosis, the approach will be different. The most important step: Immediately convey that AS is not their fault, it’s not life-threatening, and they can’t catch it, says Dr. Tate. She adds: “While you don’t want to upset your children, it is important to know that they may develop an autoimmune disease in the future given that they have a family history if a parent is diagnosed.”
Start with the Basics
Most people are somewhat familiar with arthritis, which can make your explanation easier. Say, “You know arthritis makes joints like the knees and wrists painful. Well, I have a kind of arthritis that affects the spine called ankylosing spondylitis.”
You can also bring remind friends and family of the symptoms you’ve been having and connect them to your diagnosis. For example:
- Lower back pain and stiffness that makes it harder for you to get out of bed in the morning
- Struggling to get out of a chair after you’ve been sitting for a while
- Canceling plans because you’re not feeling well
Sal remembers that their best friend wasn’t so surprised to hear the news. “She knew I had been in pain a lot of the time and already guessed that I had arthritis of some sort.”
Consider an ‘Elevator Pitch’
When Sal was first diagnosed they say, “I wasn’t open about it to my friends and larger community, so it increased my feelings of isolation and invisibility — no one could see my pain on the outside.”
A decade later, Sal’s approach to sharing their disease with others has changed. “Now I’m really open about it. When I’m introducing myself, I’ll say, ‘Hi, I’m Sal. I’m a visual artist and I live with chronic illness. I have ankylosing spondylitis, which is a systemic chronic disease that primarily affects the spine, but it also affects my whole body, so I’m often experiencing different physical and mental symptoms.” (Read more about the lessons Sal learned in the 10 years since being diagnosed with AS.)
You may want to develop a short summary of AS you can share with acquaintances so you can explain it simply and move on. However, with close family and friends, you may want to get into more detail about what AS is and how it’s treated.
Explain How AS Pain Is Different
Back pain is one of the most common reasons people see their primary care providers, says Dr. Tate. But what people fail to understand, including some people with AS, is that inflammatory back pain is different from mechanical back pain. Mechanical back pain is often due to injuries or structural issues in the back, like a slipped disc. Some arthritis in the back can also be due to degenerative processes that tend to happen with age. But AS is because of underlying inflammation that is driven by an overactive immune system.
“Inflammatory back pain awakens people at night, often to the extent that they have to get up and move to get comfortable again,” explains Dr. Tate, who adds that this misunderstanding is one of the main reasons for the delay in diagnosis. “I had a 22-year-old tell me she thought her back pain was just a normal part of getting older,” she says. Explaining this to your loved one can help them appreciate what you may be feeling even though you don’t “look sick.”
It also helps people understand that AS won’t just get better on its own over time, the way other kinds of back pain do. It usually requires medication and regular care from a doctor (typically a rheumatologist).
Share That AS Is Lifelong and Progressive
AS doesn’t go away; it’s an immune-related condition. Like many inflammatory and autoimmune conditions, it’s thought to be due to a combination of genetic and environmental factors. Though experts are still learning more about risk factors and causes of AS, having a gene called HLA-B27 increases your risk of having AS, says Dr. Tate.
AS is also progressive, which means that without treatment, it can get worse. Symptoms like pain and stiffness can spread and affect other joints, such as the hips, ribs, shoulders, and neck. It can also cause permanent damage to joints in the spine, eventually leading to some fusion, loss of mobility, and disability.
People with AS also tend to develop related inflammatory diseases, such as inflammatory bowel disease (like Crohn’s disease) or inflammatory eye disease (uveitis).
Of course, you don’t want to alarm your loved ones with accounts of what might happen. But sharing this information can also help them understand the seriousness of AS and why you’re so concerned about it.
Consider saying something like, “AS is a lifelong disease, and right now there is no cure, but there are treatments that can help keep it from getting worse and make it easier for me to manage my symptoms,” suggests Dr. Tate.
Give an Overview of Treatment
Treatments for AS include non-steroidal anti-inflammatory drugs (NSAIDs) and steroids, but the game-changer has been biologics, which are taken by injection or infusion. “These drugs have made a world of difference,” says Dr. Tate. “They can help us achieve a true decrease in the progression of the disease.” Biologics are targeted drugs that work on specific parts of the immune system to reduce overactivity, which relieves AS symptoms and may help prevent long-term damage.
That said, your loved ones should know that treatments aren’t cures and many people with AS can still have considerable pain and other symptoms even if they’re on an effective treatment plan. Try telling people something like, “I’m taking medication for my AS, but I still have days when I might look fine but don’t feel fine, so I’ll need your understanding. I might also need your help.”
When those bad days result in cancelled plans, Sal tells friends: “I’m having a pain day, so if you want to hang out with me you can just come over, otherwise we’ll find a different time.”
Recruit Family and Friends
Sal’s family is mostly in Seattle, but luckily, they formed a local friend group or “pod” in New York to help when Sal isn’t feeling well. “I have one person to pick up my meds, one person to get cat litter, and one person to get my food. It helps me not feel overwhelmed.”
Today, Sal knows the pod by memory, but in the beginning created a written list of friends, “so that I would know [who to call] if I’m not feeling well or need emotional support.”
Give Resources to Learn More
For those who have a lot of questions or are the kinds of people who crave more information when they’re learning about something unfamiliar and potentially scary, encourage them to read more about AS from trusted sources. Dr. Tate recommends people check out information on the website of the American College of Rheumatology, CreakyJoints, and RheumNow. ( This website is written by rheumatologists and other experts for health care professionals, but it can be a good way to stay on top of the latest news and what doctors are discussing and learning about AS.)
Tell People What You Don’t Want
“When I was first diagnosed, my parents wanted to send me 10,000 links to articles and solutions,” says Sal. “Although it was well-intentioned, I wasn’t ready to be getting all that information. Be clear to your support group about what kind of information you want — or don’t want — as a way to set boundaries and not get overwhelmed.”
In the end, only you can decide when and how to tell your friends and family about your AS diagnosis, but these ideas can help you begin to think about what to say and what issues to cover in your conversation.
While sharing about your health condition with others can make you feel vulnerable, think of it this way: The more you share, the larger your support network can be to help you manage and live better with ankylosing spondylitis.
Be a More Proactive Patient with ArthritisPower
Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up.
Interview with Rachel Tate, MD, a rheumatologist in Hollywood, FL.
Jovaní V, et al. Understanding how the diagnostic delay of spondyloarthritis differs between women and men: a systematic review and metaanalysis. Journal of Rheumatology. February 2017. doi: https://doi.org/10.3899/jrheum.160825.
Ogdie A, et al. Real-world patient experience on the path to diagnosis of ankylosing spondylitis. Rheumatology & Therapy. June 2019. doi: https://doi.org/10.1007/s40744-019-0153-7.
Rosland AM, et al. Emerging models for mobilizing family support for chronic disease management: a structured review. Chronic Illness. 2010. doi: https://doi.org/10.1177/1742395309352254.