“You have what?” For those with ankylosing spondylitis (AS), this question is all too familiar.
AS isn’t exactly a rare condition. It’s a type of axial spondyloarthritis, which affects approximately 2.7 million Americans. A study suggests 0.2 to 0.5 percent of people in North America have AS. Still, it isn’t a condition that the general public has much knowledge of, which is why as a friend or family member of someone with AS, you might be blundering over what to say.
But that’s OK. We’re here for you. Here are a few things that people with AS have heard and what they wish they’d heard instead. Take them in stride and see how you can support your loved one with AS.
AS is a chronic form of arthritis that affects the spine, in particular the lower back area near the pelvis where the sacroiliac joints are located. Medications are meant to reduce pain and inflammation, but they can’t cure the disease. Taking an over-the-counter pain reliever may help, but only temporarily.
There are many different types of treatments for AS, and what works for one person won’t necessarily work for another. Consider going to one of your friend’s checkup appointments with them, as long as it’s OK with them. If they’d rather you not tag along, follow up by giving them a call after their appointment. It can be a good way for them to digest what they’ve just heard, and will give you a sense of what they’re going through too.
AS is its own unique condition. It may have similar symptoms to other types of arthritis, including rheumatoid arthritis, but the management and treatment are different. Comparing your loved one’s condition to anything else isn’t going to help them or make them feel any better.
Asking your friend what you can do shows that you care and that you’re there for them. Even if they don’t ask for help, they’ll appreciate your offer of assistance.
It’s surprising for most people to find out that AS is common among younger individuals: People aged 17 to 45 have the highest risk of being diagnosed. While the disease affects everyone at a different rate, it is progressive. This means that the symptoms typically worsen over time.
As your loved one is going through their own AS journey, take some time to learn more about the disease. It may be helpful for you to join them during one of their appointments or carve out some time to do your own research about the disease online.
Many people who are first diagnosed with AS still look the same. They still follow the same schedule, eat the same foods, and even keep up with their same jobs, hobbies, and activities. But that doesn’t mean they’re not in pain.
Many of the day-to-day chores that were second nature before present themselves as major feats or challenges today. Your friend may want to maintain their independence, which is great, but that doesn’t mean they’re completely refusing your help. Something as simple as coming over to take out the trash or pulling weeds in their garden are thoughtful gestures.