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Group Healing: Sarcoidosis Support Groups

© Lou Robinson

The human need for support has been recognized for a long time. Support outside the family has materialized in small church groups, neighborhood coffee klatches, and other informal gatherings. Since we have become a mediated society, it is difficult to avoid becoming a part of the mass support group for family members of major disasters, such as plane crashes, school shootings, and hostage situations.

In the latter part of the 20th Century, persons with chronic conditions and their healthcare providers originated specialized support groups. With the current advent of technology, numerous support groups and other resources are available at the click of a mouse. Online sarcoidosis support groups abound, and provide a variety of sharing opportunities, including chats, discussion forums/message boards, stories, and pictures. Most sites also provide education, and links to national and international support organizations, on and off line. Directories for support groups by states, as well as information on starting support groups can also be accessed.

I had been struggling with what was thought to be Rheumatoid Arthritis (RA) for three years before my sarcoidosis diagnosis was confirmed in 1984. Since I was missing one of the markers for the disease, I chose not to embrace it, but to fight against it. When sarcoidosis was confirmed in 1984, there was very little information available. I had seen the condition at it most severe while working with a young woman with endstage lung disease, so had read small bits and pieces in different medical texts, and spoken with other healthcare practitioners. I was naturally terrified when I received my diagnosis, although the condition was labeled mild. By the time my terror of being diagnosed with a potentially life-threatening disease turned into anxiety about what would happen next and how I would handle it, I had begun to feel very much alone. This strange-sounding, strange-acting condition was difficult for me to explain to friends and family. And, the mysterious nature of it, without any outward signs, seemed to inspire either skepticism or vague discomfort in others.

Fortunately, much has changed since the eighties. But, I still remember the relief I felt when I received the packet of information from the National Sarcoidosis Resource Center. Just knowing that there were others out there with stories similar to my own, and who were managing their lives in the face of the ups and downs experienced constantly, helped me to reign in my emotions and make some baby steps toward healing. I felt grateful that Sandra Conroy had devoted her life to sarcoidosis, and that I could receive support, education, and advocacy from her organization.

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