Written by
Margot Hahn
Communications Intern
At FSR, we aim to find avenues that connect sarcoidosis patients across the United States and abroad. People living with sarcoidosis are no stranger to the degree of unknown information about the disease and its effects. The seemingly endless cycle of doctor appointments, treatment regimens, and unrelenting symptoms and side effects can be exhausting and anxiety-inducing. It may be extremely frustrating and scary to feel as if nothing is progressing. However, many people living with sarcoidosis and other chronic illnesses are bravely sharing their experiences and help others while doing so.
If you’ve been looking for ways to get more involved with the sarcoidosis or other chronic illness community, here are three easy options:
1. Join the Stop Sarcoidosis Online Community on Inspire
Inspire is an online support platform that allows people to share their personal experiences and knowledge about various chronic illnesses. The 40,000+ members from 50 U.S. states and 80 countries in our Stop Sarcoidosis Support Community discuss topics ranging from types of sarcoidosis to treatment decisions, fatigue, moral and financial assistance, and family and friends. The platform organizes dialogue about the disease into categories so users can find support with ease. When sarcoidosis patients or their loved ones start conversation threads on Inspire, they may feel less isolated and connect with people from unexpected places. People commonly ask questions about their diagnoses, medications, and daily routines, inspiring others to detail their own experiences and offer advice. This online support system can be a great compliment to in-person support groups, or an option for someone who is unable to attend meetings. Find a support group near you with FSR’s online support group directory.
2. Explore the Online Blogging Community
Although Inspire is online, the knowledge that people take away from dialogue around sarcoidosis can be translated offline. The Mighty is a blog website where people write opinion pieces and personal memoirs on more than 600 physical and mental illnesses or conditions. In recent years, the sarcoidosis community on The Mighty has grown, revealing the power of communication and the action that can follow. Several sarcoidosis survivors detail their individual experiences with the disease. They discuss prioritizing what is important in life, confiding in family, and the creativity they have harnessed while grappling with pain or loss. To some, opening up about chronic illness can be daunting and even draining. Speaking up and speaking out can signify to others–who may be frustrated from being misdiagnosed or constantly feeling sick—that there are networks of people trying to navigate their own illnesses, together. A sarcoidosis warrior living in a country outside of the U.S. could be inspired by mindfulness tips that The Mighty bloggers share.
People living with sarcoidosis and other chronic illnesses use Inspire and The Mighty for more than expressing their experiences—they learn more about how their symptoms manifest themselves into their individual lives while finding similarities in the lives of others. If you’re interested in sharing your sarcoidosis story but aren’t looking to be a regular writer for The Mighty, consider writing a guest blog post for FSR’s website.
3. Connect with Others with Chronic Pulmonary Conditions
Since around 90% of people living with sarcoidosis have pulmonary involvement, many understand the importance of finding organizations and support groups that focus on lung and breathing treatments. Better Breathers Clubs are support groups offered by the American Lung Association that assist people affected by conditions such as pulmonary sarcoidosis, pulmonary fibrosis, and lung disease. Family members, friends, or other caregivers also participate in these clinics. People living with pulmonary illnesses not only learn how to build trustworthy relationships with physicians, but they can find new treatments, breathing techniques, and gain inspiration from lifestyle tips. Although some people in Better Breather Clubs may not have sarcoidosis, participants can create bonds with others who share common experiences. These valuable sessions are offered in multiple locations in the U.S.- find one near you.
Keep fighting, sarcoidosis warriors. Many days may feel like an uphill battle, but your efforts to educate, connect with fellow survivors of sarcoidosis and other chronic illnesses, and learn from the experiences of people in online and offline communities are incredibly impactful.