How to Find Support for Ankylosing Spondylitis

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Ankylosing spondylitis (AS) is a progressive condition that will worsen with time. It can cause significant pain, fatigue, and disability and affect various aspects of your life, including your work and home lives. The emotional strain of living day-to-day with AS can affect a person's mental health and lead to mood disorders like depression and anxiety.

There is no cure for AS, but treatment can manage the disease's processes, ease back pain and other symptoms, and reduce the potential for disability and other disease complications. It is also vital to have emotional support to better cope and deal with all the various aspects of the disease.

Support can come from various areas, including from family and friends and online and in-person support groups. You can also seek out support from mental health professionals. Most people will utilize a combination of support types to help them manage the various and often changing aspects of AS.

This article will cover the types of support options available to you, the benefits of support groups, and how to find the right group for you.

Support group listens to experience of person with ankylosing spondylitis

SDI Productions / Getty Images

Types of Support Groups

According to Mental Health America, support groups are places where people can "come together to share their stories, experiences, and lives" in a way that helps to manage feelings of loneliness and isolation.

Isolation and loneliness are significant problems for people with chronic pain conditions like AS, according to a study reported in 2018 in the British Journal of Pain. And people who experience chronic musculoskeletal pain are at greater risk of being lonely.

Family members and friends may not always know how to sympathize or help. Your medical providers tend to focus on your physical health rather than your mental health.

A support group for AS can connect you to people who know exactly what you are dealing with on a daily basis. And no matter what you are going through, the best advice often comes from people who have walked in your shoes. Through sharing, people can get support and encouragement from their fellow group members and offer the same in return.

You have many options when it comes to seeking group support for AS, including online forums, message boards, social media pages, and more.

Online Forums

Online forums are created by organizations. These are safe spaces where you can ask questions, receive peer support, and discuss concerns and interests. Online forums for AS will cover discussions on things like symptoms, coping, research, and treatment.

You can find online forums for AS on websites that offer health information and resources for different health conditions, including the following:

Message Boards

Message boards are similar to online forums. They offer you an opportunity to discuss AS online. You must register on the associated website to join the community and post messages for most of these.

The Spondylitis Association of America, a nonprofit organization dedicated to education, research, and advocacy, has message boards. You can post questions and offer insights about your experience with AS on the message boards. You can also read the many conversations about treatment, lifestyle challenges, coping with AS, and more.

Social Media Pages

Social media websites and apps, including Facebook and Twitter, can offer spaces for people with AS or other health conditions to connect with others going through similar situations and to gain and offer peer support.

For example, people with mental health conditions report benefits from interacting with their peers on social media. Such benefits include "social connectedness, feelings of group belonging," and the ability to share "personal stories and strategies for coping with day-to-day challenges of living with a mental illness."

Social media pages can also be educational spaces for people with AS. For example, you can learn about new ways to cope or manage symptoms from others who have long-term experience living with AS. Or people on these pages can share how they manage pain, what hasn't worked for them, and what has.

Talk to Your Healthcare Provider First

Be sure to talk to your healthcare provider before trying something you have read about online. What works for someone else might not work for you or could lead to adverse effects.

Blogs

Blogs can be a source of inspiration and hope. They generally come from people living with AS who understand what AS is like to live with daily. Blogs are online spaces where you can read about the experiences of others with AS and you can share your own.

For some inspiration, start with Your Stories from the Spondylitis Association of America. Or you can read the first-person stories of people like you on personal blogs.

Here are a few AS blogs to get you started:

Clinical Trials

AS is a disease without a cure, and researchers are unsure of its exact cause. But ongoing research can help answer many important questions. Clinical trials allow you to take part in new research that can benefit you and many others. You might even be compensated for your time.

Your healthcare provider can be a helpful resource for finding a clinical trial that meets your needs. You can also search for an AS clinical trial at clinicaltrials.gov.

Going through a clinical trial may provide you with an opportunity to meet with others living with AS who might share your interests and concerns. You can also get advice and support about AS from the people conducting the research.

Family and Friends

While AS can run in families, it is possible that you might be the only one in your family with the condition, and this can make living with and managing AS harder. But family and friends can still offer you support and understanding.

It can be helpful to be open to the people closest to you, such as your partner, best friend, sibling, or parent. Loved ones don't know what it's like living with AS, but if they love you and care about you, they will want to know. Allow them to do everything they can to support you.

In-Person and Online Support Groups

Online organizations might also offer local chapters or events in your area. You might also be able to find an in-person support group through your local hospital system or a community center.

Even if you cannot find a local support group for AS, consider an online group. Online meetings can allow you to connect on your own schedule and when you need those connections and support the most.

Counseling or Therapy

Even with the support of loved ones and support groups, it is still possible to experience the emotional effects of AS. Mental health is often affected in AS. There is also an increased risk for depression and anxiety in people with AS compared to the general population.

When looking for mental health support, it is essential to find the right match. You will want to work with someone you are comfortable talking with and can trust.

Your healthcare provider can refer you to a counselor. You can also get recommendations for a counselor from family, friends, coworkers, or religious leaders.

Benefits of Support Groups

Being surrounded by people who know and understand what it is you are going through can be comforting. You also get to see that it is possible to have a normal and productive life despite the effects of AS. Support groups can offer many additional benefits to someone with AS.

A Better Understanding of AS

Support groups can offer valuable resources for learning about and living with AS. People in these groups can recommend reading materials, websites, and tips on how to manage pain, fatigue, and stress.

The Ability to Get Things Off Your Mind

A support group can be a safe space for speaking up about things that are bothering you. Sharing your concerns or worries with the group can ease your emotional burden and help you better cope. When others share their stories, you gain some insight into how they are handling their unique situations.

Managing Loneliness

People who attend support groups often comment they no longer feel alone and judged. There is a great sense of relief in meeting people who get what you are going through.

A Mental Health Boost

Being around others can help boost your mood and allow you to feel hopeful and confident about the future. When you see others with AS thriving and succeeding, you start to imagine the possibilities.

Learn About Self-Care

Support group members can offer you ideas about taking care of yourself, managing stressors, combating fatigue, and how to feel mentally and physically better.

Finding the Right Support Group

Your primary healthcare provider, rheumatologist (a specialist in inflammatory diseases of the joints, bones, and muscles), or therapist are good places to start when looking for local support groups. You can also search for a local meeting using the websites of arthritis and AS organizations.

Check out the following websites to see if they have anything in your area. Even if they don't have something locally, most offer online support:

When choosing a group, consider what the group focuses on, how members meet (online or in person), and who is leading the group. You will want to be a part of a group where the leader has undergone some type of training.

There are some red flags that can indicate a group might be problematic. These include:

  • Charging a high fee to attend
  • Making promises of a cure for AS or another health condition
  • Pressuring you to buy products or services

Once you join a support group, you might be nervous at first about sharing personal issues with people you don't know. That's OK. You can still benefit from listening. Over time, you will want to contribute your own ideas and experiences to make the most of what the support group has to offer.

You try a support group for at least a few weeks to determine if it is a good fit. If after a few weeks, it doesn't feel right, consider a different group or different support format (online vs. in person).

Reminder

A support group is not a substitute for your healthcare provider's advice. If you find you are still struggling to cope with AS, ask your healthcare provider about a referral to a therapist or counselor.

Summary

Ankylosing spondylitis is a lifelong condition. In living with it, you can feel lonely at times. It also isn't well-known, so its effects are often misunderstood. But that does not mean you are alone. You can still get support from others who understand your condition and care about you.

Your support group options are many, including online forums, blogs, family and friends, and online and in-person meetings. Joining a support group offers many benefits, including more information about AS, coping, and managing pain and other symptoms. It is wise to do your research and find a group that best meets your unique situation.

A Word From Verywell

There is no cure for ankylosing spondylitis, but most people with AS can live long and full lives.

It is important to get an early diagnosis and to reach out to your healthcare provider as soon as you start experiencing signs of the condition, especially pain in the low back, hips, and buttocks. That way, aggressive treatment can start quickly and reduce the potential for spinal deformity and other complications.

Different therapies are available to manage pain, slow down damage to the spine, and treat other symptoms. Physical therapy and exercise can also help to improve symptoms and physical function. Work with your healthcare provider to ensure the best possible outcome and quality of life for yourself.

Frequently Asked Questions

  • Is having ankylosing spondylitis a disability?

    Ankylosing spondylitis can be a disabling condition because it causes chronic pain and stiffness. It can restrict the mobility of the spine. Despite these effects, very few people become disabled from AS.

    Newer, aggressive medications, including standard disease-modifying antirheumatic drugs (DMARDs) and biologics, can reduce the potential for disability and disease complications.

  • Can ankylosing spondylitis affect your mental health?

    The effects of ankylosing spondylitis can impact both your physical and mental health. Studies have shown that AS affects mental health and there is an increased risk of anxiety and depression in people with AS compared to the general population.

  • What are some lifestyle changes that can help you manage ankylosing spondylitis?

    Many people with AS find that making some lifestyle changes can help them to better manage AS symptoms. Lifestyle changes that can benefit people with AS include quitting smoking, eating a healthy diet, managing excess weight, being active, practicing good posture, and managing stress.

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