Caregivers, or care partners as some prefer, play a crucial role in the lives of people affected by chronic illness. They are an invisible, unpaid healthcare workforce supporting the foundation of our healthcare system and providing 80% of all home care services. Not only do they provide valuable unpaid services, many must juggle employment responsibilities along with caring for a loved one. Others lose significant amounts of lifetime earnings and social security benefits to stay home with a family member.
Care partners have their own needs when their loved one is diagnosed with a chronic disease, and they need the supportive understanding of other myositis care partners who understand what they are going through in the same way the myositis patient does. TMA provides a number of opportunities for myositis care partners to find this support:
TMA Talking Circles is a network of individuals who care for a loved one with myositis. They connect by phone or email as a way to give and receive emotional support. Like Support Groups, Talking Circles are a safe place where care partners can feel free to share all those feelings without being judged. To sign up for additional information, please contact TMA.
TMA’s Care Partners Forum includes a section just for care partners. The Forum is a safe, private, password-protected chat room where TMA members share their stories and resources with other myositis patients and care partners. Participants are very responsive and sensitive to the needs of others, and many develop the close connections of a support group.
TMA Annual Patient Conference has a number of sessions geared toward care partners. While you can share this experience with your myositis patient partner and learn everything you can about her or his disease, you can also meet and talk with many other care partners who are experiencing similar feelings and concerns. The following videos may be of interest to care partners: