Myositis and Your Mental Health: Understanding the Emotional Burden

When you’re living with myositis (idiopathic inflammatory myopathies), you’re probably eager to find relief from the physical effects, like muscle weakness and fatigue.

But there are other important matters to tend to, too — namely, your mental health.

Your physical and mental wellness are two sides of the same coin: When one suffers, the other often does as well. Addressing your mental health is an important consideration in your treatment plan, says rheumatologist Soumya Chatterjee, MD.

Dr. Chatterjee explains the connection between myositis and mental health, and shares advice for taking care of your whole self.

How myositis affects mental health

Mental health conditions like depression and anxiety are common among people living with myositis.

“Myositis and its treatments can affect your mental health,” Dr. Chatterjee acknowledges. “Some estimates suggest people with myositis are twice as likely as the general population to experience depression and anxiety.”

Dr. Chatterjee offers a few reasons why that may be.

• Chemical changes in your brain: Chronic inflammation associated with myositis can affect your brain chemistry, including the parts involved in mood regulation. “There are very real chemical and biological changes happening,” he notes.
• Chronic fatigue: Fatigue is one of the most common symptoms of myositis. And that constant flu-like exhaustion can take an emotional toll. “Fatigue and depression tend to go hand in hand,” Dr. Chatterjee explains. “Fatigue can add to depression, and depression can accelerate fatigue.”
• Uncertainty: Myositis can be difficult to diagnose. You may have gone through a long journey to get to a diagnosis and an effective treatment plan. That can leave you feeling confused, dismissed or anxious for long periods of time.
• Overlapping conditions: Myositis is often associated with other serious health conditions, including cancer and lung disease. Managing those conditions, or worrying about developing them in the future, can add to the emotional burden.
• Treatment side effects: Some treatments for myositis — particularly high‑dose steroids — can affect your mental health. You may experience mood changes and anxiety and be at an increased risk of depression. In rare cases, steroids can trigger psychosis.
• Social impacts: Living with a rare, chronic illness can strain your relationships. Isolation and loneliness can worsen your mental health.

Managing mental health when you have myositis

While you can’t control every aspect of the disease, there are ways to support your emotional well‑being alongside your physical treatment. Small, intentional steps can help make a meaningful difference in how you feel day to day.

Dr. Chatterjee shares three ways to improve your mood and manage your mental wellness.

1. Use movement as medicine

There’s a good reason that physical therapy is typically part of a myositis treatment plan: Gentle exercise is good for inflamed muscles. What’s more, it can also support mental health.

Exercise helps give you energy and releases endorphins that support your mood.

“Among all the things we do to treat fatigue, exercise is by far the most effective,” states Dr. Chatterjee.

Talk with your myositis care team, particularly a physical therapist, for exercise recommendations tailored to your abilities.

2. Seek connection

Living with a rare condition like myositis can feel lonely. It can be hard to explain the impact of your condition on your life and your mood. And you may worry that others won’t understand or will judge you.

Connecting with those who share your lived experience can be especially helpful.

Support groups, whether in-person or online, can help you build a community of people who “get it.” Connecting with others who live with myositis can teach you more about your condition and help you learn new coping strategies.

Not sure where to start? Organizations like the Myositis Association offer resources, events and opportunities to connect with experts and peers.

3. Get professional support

Addressing mental health concerns early is an important part of managing myositis and living your best life. So, talk to your healthcare provider if you’re experiencing persistent sadness, anxiety, irritability or emotional exhaustion,

Therapy can help. So can medications for depression or anxiety. (And yes, they can usually be taken with your other myositis treatments.)

If you’re experiencing thoughts harming yourself or others, seek immediate help. Call 911 or emergency services. Or contact the 988 Suicide & Crisis Lifeline (U.S.) by dialing or texting 988 for free and confidential support.

Final thoughts: Mental health care is part of myositis care

If myositis has affected your mental health, you’re not alone. The emotional toll of chronic disease is common, expected, and rooted in real physical and psychological factors.

Treating myositis effectively means addressing both your physical symptoms and mental well‑being. Seeking mental health support and social connection can help you feel better — inside and out.

“Mental health is just as important as physical health to help you be your best,” Dr. Chatterjee emphasizes.