Being diagnosed with a chronic, rare disease can be very disorienting for both patients and those who care for them. Suddenly life looks very different, and adjustments must be made to accommodate new limitations. Many questions arise during this time, both practical and emotional. Coming to terms with this new landscape can take some time, but there are things you can do to facilitate your adjustment.
Arm yourself with information. This is one of the very best ways to start your journey with myositis. The About Myositis section of this website provides a detailed overview of myositis as a disease. The Myositis Library offers the opportunity to delve more deeply into the details and new research developments related to myositis diseases. Asking questions of others—either health care providers or those who have the disease—is also very helpful.
Seek out others with myositis. Research has shown that people who receive support from a social network cope better, feel more in control, and have better outcomes than those who are isolated. TMA offers several opportunities to join with others who have myositis.
Attend a TMA Annual Patient Conference. Annual Conferences give you the chance to learn even more about myositis diseases and to ask your questions directly of the international myositis experts on TMA’s Medical Advisory Board. It is also a place where you can meet and talk with a large number of individuals who are also living with your condition.
Participate in TMA’s Community Forum. This 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.
Additional helpful resources