Myositis can be diagnosed in individuals from a range of age groups, both genders, and all races and ethnic backgrounds, and it is a disease that affects each individual in a unique way. Yet, many of our support group members have experienced common symptoms and disabilities resulting from their myositis. Our group shared the impact of these symptoms and disabilities that may be visible or invisible, along with their suggestions for coping, in an open discussion facilitated by Angela Hunter, Myositis Support Group Coordinator.
In some ways, myositis is visible and in other ways it isn’t. From our discussion, we noticed the advantages and disadvantages of having disabilities that are visible vs. invisible. From the few areas we focused on during this meeting, one point that was raised many times throughout the discussion was the group members’ concern about how others perceive them. It seems that sharing details about your experience with the important people in your life might be helpful and relieve some of the anxiety about what they are thinking.
Learn more about the Myositis Support Group, a free support and education group held monthly at Hospital for Special Surgery.
Summary prepared by Angela Hunter, LMSW, Myositis Support Group Coordinator