Everyday wisdom from the myositis community

We asked people with myositis to share their wisdom about living with the condition on a daily basis—here’s what they said

THIS ARTICLE IS ABOUT

People living with myositis share their honest experiences with the condition—from relying on support and making their voices heard to tracking symptoms. Their real-life perspectives demonstrate the power of self-compassion and perseverance.

KEY CONTRIBUTORS*

Watercolor-style illustrations of Collab Contributor, Barbara Barbara
Watercolor-style illustrations of Collab Contributor, Dianne Dianne
Watercolor-style illustrations of Collab Contributor, Tessa Tessa

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This article is intended for educational purposes only and not as medical advice. It’s important to talk to your doctor regularly about any questions you have, including sharing your symptoms, so they can develop the treatment plan that’s right for you.

Living with myositis

Experiences with myositis come in many forms. For some, it may be frequent muscle weakness or muscle pain; for others, it could be skin rashes or shortness of breath. No two experiences with myositis are the same. Contributors to The Myositis Collab represent many different subtypes of myositis, as well as different life experiences. No matter the subtype, it can take time to find ways to manage and move forward. Hear from members of the community about what they’ve learned living with myositis.

Barbara, living with polymyositis
Barbara, living with polymyositis
It’s a joint effort between me and my physicians. They listen to what I say, and we come up with a plan that works for me.

Barbara, living with polymyositis

  • Consider keeping a record of your symptoms
    It may help you to keep a journal, memos on your phone, or even something as easy as sticky notes to track your symptoms, their severity, and how often they occur. If you have dermatomyositis (DM), you can take photos of the symptoms on your skin. Sanjay, who lives with antisynthetase syndrome (ASyS), has found that it can be helpful to share these details with his care team at each of his appointments.
  • For some, information can be reassuring
    There is a lot to learn and uncover about myositis. Consider taking time to research your care, current treatment plan, and available treatment options. Research can expand your knowledge and help you prepare for conversations with your care team. Keep in mind, it’s okay to take a break from research at any time. Information can be helpful, but it can also be overwhelming. Give yourself permission to take breaks when you need them.

Dianne, living with DM
Dianne, living with DM
Try not to let the hard days win.

Dianne, living with DM

  • You may find moments of self-care helpful
    For some, the physical and emotional challenges that come with living with myositis may impact mental health and self-esteem. The great thing about self-care is that it can be whatever you want it to be. It could mean writing affirmations that you repeat to yourself every day. It may be doing a hobby that you love. Practicing self-care comes in many forms and there is no right or wrong way to do it.
  • Try to find ways to reduce stress
    This is easier said than done. Having myositis can be stressful, not to mention everything you might have to do in addition to managing your condition. But stress can harm your body and your mind. For some people, it helps to find a stress-reliever that works for them. For Franco, who lives with inclusion body myositis, that means putting a time limit on challenging emotions. For others, it may be meditation or talking to someone about their experiences.
  • It can be helpful to make space for things that bring you joy
    Moments of happiness can still matter, even in small ways. Sanjay, who lives with ASyS, loves blogging and drawing and tries to do it whenever he can. You might reflect on what brings you joy and whether there’s room for more of it.
  • Some people find movement helpful
    If your doctor recommends it and you’re up to it, consider gentle movement to help build strength, improve flexibility, boost mood, and maintain function. Just remember to talk to your doctor or physical therapist to create movement plans that are safe and accessible for you.

Tessa, living with DM
Tessa, living with DM
You are going through a lot. You are allowed to feel how you feel. You are allowed to ask for help.

Tessa, living with DM

  • It’s okay to lean on your support system
    Learning how to navigate your life with myositis can be challenging. Considering help from the people in your life may lift some of the burden you experience with myositis.
  • Give yourself grace
    Living with an autoimmune disease can often lead to complex emotions. This is normal, but it’s important to recognize that having myositis is not your fault. Tessa often reminds herself that the best thing she can do is stop and give herself time to breathe. You can use that time to exhale, figure out what you need, and remember that you are not responsible for your condition.
  • Always remember, you deserve to be heard
    There are many ways you might consider sharing your needs with others. It may mean sharing your journey or standing up for the myositis community and pushing for better care. No effort is too small. You get to use your voice in whatever way works for you. Whether you’re talking to your support system or a member of your care team, try and express to them how you’re feeling. Let them know what you need and how myositis impacts your life.