Living with myositis: navigating the
day-to-day

Hear from the myositis community about how to manage symptoms, deal with setbacks, and look to the future

THIS ARTICLE IS ABOUT

Living with a subtype of myositis might include a variety of life changes, but hearing from others who have navigated those challenges may help you understand how to navigate your own. From giving yourself permission to grieve to preserving your energy and well-being, hear how these Collab Contributors have adapted to a new today while holding onto hope for tomorrow.

KEY CONTRIBUTORS*

Watercolor-style illustrations of Collab Contributor, Clarissa Clarissa
Watercolor-style illustrations of Collab Contributor, Franco Franco
Watercolor-style illustrations of Collab Contributor, Larisa Larisa
Watercolor-style illustrations of Collab Contributor, Sandy Sandy
Watercolor-style illustrations of Collab Contributor, Sanjay Sanjay
Watercolor-style illustrations of Collab Contributor, Tessa Tessa

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.

Managing daily symptoms

For people living with a condition like myositis, connection with others who share in that experience may be a powerful part of healing. Hearing from others who have been where you are may provide valuable information, practical insights, and reassurance that your lived experiences are real.

Recently, we had a chance to talk with a few people in the myositis community about how they manage their symptoms, deal with setbacks, and look to the future.

“It’s okay not to be okay.”

Sandy, living with polymyositis (PM)

It may be easy to feel like asking for help places a burden on your support circle. Remember, not feeling well or even needing medical attention are situations that are out of your control, and it’s okay to ask for help from your support circle and healthcare team.

“It may help to make your home as comfortable and accessible as possible.”
Franco, living with inclusion body myositis

Living with a subtype of myositis might result in a loss of abilities or a change in those abilities. Some people like Franco make small changes to their homes by adding in accessible furniture or devices.

“Try to save your energy.”
Sandy, living with PM

Experiencing fatigue is more than just feeling tired. Rather than pushing through fatigue, it may help to balance activities with breaks for rest. Remember that you get to choose where you want your energy to go.

Dealing with setbacks

“Give yourself permission to grieve.”

Tessa, living with dermatomyositis (DM)

You might associate the feeling of grief with the death of a loved one, but you might also grieve other losses along your myositis journey. Whether you’re dealing with the loss of abilities, expectations, or a previous sense of self—it’s okay to allow yourself the time and space to grieve.

“Lean into your support system.”
Clarissa, living with DM

Relying on your support circle may feel like you’re losing your independence. If you’re feeling this way, consider looking at your support circle as a place to share your burden and build resilience. Asking for help, accepting support, or simply finding someone you can talk to may help ease the physical and emotional burdens you may be facing.

“You might need to pivot sometimes.”
Larisa, living with immune-mediated necrotizing myopathy

While structure and planning may provide stability, myositis is often unpredictable, with symptoms that fluctuate over time. We encourage you to monitor changes and communicate them to your care team. And remember, it’s okay to ask for support or change plans when symptoms shift unexpectedly.

Looking toward the future

“Try not to let your disease define you.”

Sanjay, living with antisynthetase syndrome (ASyS)

Myositis can significantly affect your abilities and your daily life, but your condition doesn’t get to define who you are. Everything that makes you who you are doesn’t have to change even though you’re adapting to a new reality.

“I changed my mindset.”
Sandy, living with PM

People living with subtypes of myositis may experience periods of progress followed by periods of difficulty. Those setbacks may feel discouraging, frustrating, or even hopeless. The ups and downs of living with myositis are entirely normal, and it may help to remember that progress doesn’t always happen in a straight line.

“Make an effort to find the good.”
Sanjay, living with ASyS

Finding the positive while living with a serious condition may be hard, but it doesn’t have to be a big thing. You can start by looking for small positive moments in each day. That could mean noticing the love from your support circle, recognizing little victories over the challenges of myositis, or celebrating new connections with your community—just to name a few.

No one should have to navigate myositis alone

In leaning on others, you may discover not only support, but also hope for the road ahead.