Finding the Support You Need
Whether you’re looking for a caregiver or to simply connect and share stories with other people living with myositis, we’ve got tips here to help you.
Seeking a caregiver
Not everyone has easy access to a care partner. If you’re living with dermatomyositis (DM) or polymyositis (PM) and can use a hand, it’s important to reach out and get the help you need.
- Ask your doctor or nurse for a referral. There are agencies that provide caregiver services for a fee. You can work out with the agency how much or how little help you require. For example, 1 day a week, 2 days, or more
- Grown children and/or grandchildren might be willing to help out. Ask them to lend a hand with chores or paperwork you have trouble getting to
- Attend a local myositis support group. Meeting others nearby with DM or PM can be a great way to connect with people like you with similar experiences. It’s also a good way to build a network for help and support. A “buddy” system. For example, when one person is having a flare-up, others in the group can come to his or her aid and offer assistance
- Ask a neighbor for a hand. Grocery shopping—pushing a cart, carrying bags, etc, can be a burden for a person with DM or PM. If your neighbor is going to the supermarket, ask him or her if it would be okay to pick up a few additional items for you as well
- Check with your local church, mosque, or temple. These places of worship may offer free support services, such as caregiver help
- Get a babysitter. If you have children at home and need some help, consider hiring a babysitter from time to time. Even for just a few hours, it could make a big difference, especially during a flare-up
Connecting with others
Even though dermatomyositis and polymyositis are quite rare, you can still find support from others like you. Technology makes it easy to find those who share your concerns. There are groups on social media sites, blogs, and websites.
Research has found that people who get support from a social network cope better, feel more in control, and have better outcomes than those who are isolated.
Ask your doctor or nurse if he or she can direct you to a myositis support group in your area. You may also contact local hospitals that specialize in muscle diseases, and ask if they sponsor myositis support programs.
In addition, you can visit the links below to connect to even more support resources:
The Myositis Association
Muscular Dystrophy Association (MDA)
Understanding Myositis Community
American Autoimmune Related Disease Association
This website may identify third-party organizations and provide links to third-party websites or other third-party information (“Third-Party Content”). The Third-Party Content is meant for informational purposes only, is not endorsed by or under the control of Mallinckrodt, and is not meant to replace a physician's medical advice. Mallinckrodt has no responsibility or liability for and makes no representations whatsoever about any Third-Party Content.