Myositis mindset: mental health tips straight from the community

People with myositis talk about how they manage their mental health

THIS ARTICLE IS ABOUT

The Myositis Collab Contributors share honest perspectives on how they manage their mental health. From setting emotional boundaries to finding support in friends, therapy, and even service dogs, this article offers real-world coping strategies to help you stay resilient and connected.

KEY CONTRIBUTORS*

Watercolor-style illustrations of Collab Contributor, Franco Franco
Watercolor style illustrations of Collab Contributor, Marcia Marcia
Watercolor style illustrations of Collab Contributor, Sandy Sandy

Myositis is more than just physical

You don’t need to live with myositis for long to know that the physical symptoms are only part of the story. The mental strain of uncertainty, the isolation, and fear…. It’s a whole separate struggle that many people with myositis face.

The myositis community is filled with people who’ve been where you are. And they’ve come up with many useful coping skills and strategies for dealing with the impact that myositis can have on mental health.

We spoke with several people in the community, asking them for their best tips for mental health. What they shared might surprise you. Hopefully it can help you, too.

Sandy, living with polymyositis
Sandy, living with polymyositis
“People were telling me what I can and can’t do. But I want to be the one to decide that.”
Sandy, living with polymyositis

Sandy waves a flag for resilience

Myositis is a chronic, progressive condition. So, it’s important to tap into all the tools available to you to refill your tank and keep your mental health as balanced and positive as possible.

Luckily, there are quite a few such tools. In talks with members of the community, there were several that came up. Here are some suggestions—feel free to find the tool or tools that work for you and leave anything that doesn’t feel right.

  • Professional counseling
  • Joining a support group
  • Meditation
  • Yoga or gentle stretching
  • Reaching out to loved ones
Franco, living with inclusion body myositis (IBM)
Franco, living with inclusion body myositis (IBM)
“When I feel depressed, I let myself feel how I feel. Then I call a friend, make a dinner date, and force myself to get out of the house and live my life.”
Franco, living with inclusion body myositis (IBM)

Franco gives sadness some space—and a deadline

Franco’s way of coping with the sadness that myositis brings on includes reaching out to a loved one, friend, or colleague. That may be an effective strategy. Spending time with people you trust and care about can help you get out of your own head by processing your feelings out loud or even focusing the conversation on something other than myositis for a while.

Marcia, living with dermatomyositis (DM)
Marcia, living with dermatomyositis (DM)
“My service dog is such a great source of support and companionship.”
Marcia, living with dermatomyositis (DM)

Marcia recommends a 4-legged mental healthcare companion

Myositis and isolation go together far too often. For Marcia, the solution was getting a therapy dog. If that’s an option for you, it’s well worth considering, as therapy dogs have been known to provide significant mental health benefits:

  • Reducing anxiety and depression
  • Increasing social connection and motivation
  • Easing loneliness and fostering self-esteem

Don’t give up on yourself. You matter.

Good mental health is an important aspect of a healthy, happy life for anybody. But when you live with myositis, it can be a crucial part of your care.

With a little inspiration from your friends in the community, hopefully you’re ready to take a positive step toward better mental health today.

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