If you’re living with spondylitis, you’re already aware of the impact the condition can have on your life — but chances are strong that other people in your orbit don’t know as much as they could about the disease. That’s why it’s important to raise awareness of the condition — particularly in May, which is Spondyloarthritis Awareness Month.
It can be hard when your friends and family don’t know what you’re going through. It can also feel difficult to say no to loved ones who don’t understand your situation because you might worry about how your relationships will be affected.
Raising spondylitis awareness is important so your friends, family, and acquaintances can better understand how to support you. Check out five ways that you can get involved with spondylitis awareness.
Before you can create public awareness by sharing information with others, it’s a good idea to understand the specifics of spondylitis. Learn more about spondylitis’ causes, signs and symptoms, and treatments.
Spondylitis — also called spondyloarthritis — is the name given to a family of closely related diseases that primarily affect the spine, pelvis, and hips (axial skeleton). When spondylitis involves the axial skeleton, it is called axial spondyloarthritis. Spondylitis can affect other peripheral joints and cause additional symptoms as well, including chronic pain and impaired quality of life.
The words that members of the medical community use to talk about spondylitis have been changing since the late 2000s when specialists agreed on a new set of criteria to use for the diagnosis of spondylitis. If you have heard doctors use multiple terms to talk about your condition, that’s because there is still discussion in the medical field about the best way to classify types of spondylitis.
After you’re armed with information about spondylitis, you can share it with others. The fastest and least expensive way for this kind of advocacy is through social media. You can post information about spondylitis, share details about the condition, and join communities of other people who are also working to raise spondylitis awareness.
To ensure your messages on social media spread awareness to as many people as possible, consider using an appropriate spondylitis-related hashtag, like #Spondylitis, #Spondyloarthritis, and #SpondylitisAwareness. This way, your posts will be seen by more people who have the same interests, and they’re more likely to share and comment.
Social media posts help raise awareness for the condition, and posting also allows other people with spondylitis to realize they aren’t alone. Joining a spondylitis community on social media, such as MySpondylitisTeam, can also help you connect with others.
“I’m being very outspoken trying to raise awareness for spondylitis,” said one MySpondylitisTeam member. “It’s the only way to educate those who don’t know.”
Another way to raise awareness about spondylitis is to participate in an activity dedicated to the cause. You can walk or run for spondylitis, play bingo, host a silent auction or fundraiser, or even create a unique event that works for your interests. You can help other people understand more about spondylitis while having fun and working to raise funds for the cause.
If you are able to, you can also donate to the Spondylitis Association of America to support spondylitis research and advocacy.
Even if you aren’t able to donate, you can stay on top of the scientific research and legislative actions that come out of the donation efforts by following the Spondylitis Association of America online.
On MySpondylitisTeam, the social network for people with spondylitis and their loved ones, more than 81,000 people living with spondylitis come together to ask questions, give advice, and share their stories with others who understand life with the condition.
Share your spondylitis journey in the comments below, or start a conversation by posting on your Activities page.