Support from others who understand your condition is key to leading a happier, healthier life.
Whether you’ve been recently diagnosed with AS or have been living with it for some time, you know that this condition can feel isolating. AS isn’t well-known, and many people don’t understand it. But you’re not alone.
Here are nine resources for support that you can look up right now.
The Arthritis Foundation is a leading nonprofit in arthritis research and advocacy that offers networking opportunities for people with various types of arthritis.
This includes the foundation’s Live Yes! Arthritis Network. It’s an online forum that offers opportunities for people to connect about their journeys and support each other.
You can sign up and connect online to share experiences, photos, and treatment tips.
The Spondylitis Association of America (SAA) is a nonprofit organization dedicated to research and advocacy for all types of spondylitis, including AS.
You can also take advantage of their online message boards to connect with others from across the country. You can post questions and offer your own insights, all from the comfort of your home.
There are conversations on topics including lifestyle challenges, medications, therapy options, and more.
The SAA also has affiliate support groups across the country. These support groups are run by leaders who help facilitate discussions about spondylitis. Sometimes, they bring in guest speakers who are experts on AS.
If you don’t see a support group in your area, contact the SAA for tips on starting one.
If you prefer to work off your own social media pages, the Arthritis Foundation has its own Facebook and X accounts.
These are good resources for keeping up with new research about arthritis and AS. They also provide opportunities to connect with others.
You can also make your voice heard on social media by sharing little-known details about AS.
We often seek inspiration from others, which is perhaps why the SAA has made it a point to create a blog with real-life experiences.
Called Your Stories, the blog offers a space for people with spondylitis to share their own struggles and triumphs. In addition to reading others’ experiences, you might consider sharing your own story to keep the conversation going.
Despite advances in treatment, there’s still no cure for AS, and doctors aren’t sure of the exact cause. Ongoing research is needed to help answer these critical questions.
This is where clinical trials come into play. A clinical trial allows you the opportunity to take part in research for new treatment measures. You may even receive compensation.
You can search for clinical trials related to AS at clinicaltrials.gov.
Ask your doctor if a clinical trial may be suitable for you. You’ll get to meet with AS researchers. Plus, you have the potential opportunity to meet others with your condition along the way.
We often think of our doctors as professionals who only offer medications and therapy referrals. But they can also recommend support groups.
This is especially helpful if you’re having difficulty finding in-person support in your area.
Ask your doctor and their office staff for recommendations at your next appointment. They understand that treatment includes managing your emotional well-being just as much as any medication you’re taking.
One of the complex mysteries about AS is that it can have an inherited genetic component. The condition may not necessarily run in your family, though.
If you’re the only one in your family with AS, you might feel lonely in your experiences with your symptoms and treatment. But your family and friends can be key support groups.
Maintain open communication with your family and friends. You can even set up a specific time each week for check-ins.
Your loved ones may not know what it’s like living with AS. But they’ll want to do everything they can to support you through your journey.
As isolating as AS can feel, you’re never alone. Within minutes, you can connect with someone online who shares some of the same experiences you do.
Reaching out and talking with others can help you understand and manage your condition and enjoy a better quality of life.