In a discussion on self-advocacy, we focused on how those with myositis recognize their own needs and the benefits of voicing them to others. The group talked about the challenges of advocating their needs as well as some helpful tips on self-advocacy. The group focused on negotiating relationships in four different categories:
What is self-advocacy?
It can mean that you are confident in speaking up for yourself with others. It can represent knowing your needs and negotiating techniques to make them happen. It can refer to questioning things that you do not understand in order to receive enough information to comprehend them, and it can refer to knowing your rights and making sure you receive any resources or services that you are entitled to receive.
For individuals with a rare illness like myositis, it can be helpful to learn self-advocacy techniques or to have a close friend or family member advocate on your behalf. A diagnosis of myositis can leave a person feeling out of control; however, advocating for oneself can allow a person to feel they have more control over their life. Anyone can benefit from recognizing their needs and finding ways to have them met.
Myositis Support Group at HSS
Learn more about the Myositis Support Group, a free support and education group held monthly at Hospital for Special Surgery.
Summary by Angela Hunter, LMSW
Angela Hunter, LMSW
Myositis Support Group Coordinator