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. Those who live with myositis, however, face the difficulty of dealing with a chronic illness plus the extra challenge of having a rare disease that most people have never heard of. Because the disease is so rare, it can be hard to find others who understand what you are going through and the challenges posed by myositis.
TMA answers this need by offering members several support group options.
Keep in Touch Support Groups
Keep in Touch (KIT) support groups provide members the opportunity to get together with others in their area and share concerns, friendship, and ideas. As a member of The Myositis Association, you are invited to join the TMA KIT support group network. When you choose this TMA service, your name, contact information, and diagnosis will be added to the list of support group members in your area and will only be shared with those in your specific KIT support group.
Volunteer leaders manage these local support groups, devoting their personal time and energy to organizing and encouraging communication among local TMA members. KIT members interact with each other through face-to-face support group meetings, newsletters, telephone, and e-mails. Some groups have regularly scheduled meetings with speakers, meals, and local activities.
Find Your Support GroupFor those living outside the US, please email us, and we will help you find the nearest support group or other TMA members living nearby.
MYO-Connect Program
The MYO-Connect program provides support for TMA members who live in areas where there is not yet a Keep in Touch support group established, and for those who are physically unable to attend local KIT group gatherings. This virtual support group is a network of myositis patients and care partners with the same diagnosis who connect by phone or email as a way to give and receive emotional support.
Like TMA KIT groups, this group is a safe place where patients can feel free to share their honest feelings without judgment. It’s also a place to share tips, strategies, and devices that help you overcome particular difficulties. If you feel you would like to be in contact with others who share your diagnosis, please contact TMA.
If you are not a TMA member and want to join to participate in KIT or Myo-Connect, join TMA now.
Talking Circles
Taking care of yourself is one of the most important things you can do as a care partner. Selfcare not only helps you feel better, but it gives you more energy and a more positive attitude that will help you cope better with the challenges of taking care of your loved one. One way to take care of yourself is to have a circle of friends who know what you’re going through and with whom you feel comfortable sharing your fears, frustrations, and joys.
TMA’s Talking Circles program provides a network of myositis care partners who connect by phone or email as a way to give and receive emotional support. Like TMA Support Groups, Talking Circles are a safe place where care partners can feel free to share all those feelings without being judged.
At many group gatherings, care partners talk shop, offering useful information and opinions about hospitals and physicians, medications and treatments, home health agencies, and equipment manufacturers. You can also pass along your own tips and strategies that make life easier and other resources that have come in handy when caring for your loved one. You can also ask for specific advice from other group members and share some of the details about your own journey through the challenges of caring for someone with myositis.
To sign up or for additional information, please contact TMA.
Support group leaders
If you are or would like to be a KIT support group leader, TMA has resources that can help.
If you are not a TMA member and want to join to participate in TMA’s KIT, Myo-Connect, or Talking Circles, join TMA now.