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Living with Myositis During COVID-19: Strategies for Coping and Building Resilience

Adapted from a presentation to the Myositis Support Group

The coronavirus pandemic has taken its toll physically and emotionally on the population at large. Many people with chronic illness have been impacted more greatly due to increased vulnerability. Against this backdrop, we discussed some of the emotional challenges of living with myositis during COVID-19 and strategies for coping and building resilience.

Woman with mask standing on balcony reflecting on life

It comes as no surprise that people with chronic illness are two- three times likely to experience depression, according to the National Institute of Mental Health (NIMH). During the coronavirus pandemic, depression rates have tripled.) We will review signs and symptoms of depression, stress, and anxiety and ways to cope and help build resilience (the ability to bounce back from difficult situations.)

Having a chronic illness can increase feelings of helplessness, hopelessness, isolation, fatigue, and being unable to do things that were once enjoyable. There can also be a sense of loss of control over one’s life. These feelings may have been magnified during the coronavirus pandemic and can lead to depression.

Signs and symptoms of depression

For a diagnosis of clinical depression to be made, five of these symptoms must be present − with suicidal thoughts or attempts or loss of interest in once-enjoyable activities as one of the symptoms − and last for at least two weeks:

  • depressed mood that is marked by continued feelings of sadness, anxiety, or emptiness
  • crying, often without a reason
  • feeling hopeless or “negative”
  • feeling worthless, helpless
  • feeling irritable, restless
  • loss of interest in once enjoyable activities, including intimacy and sex
  • fatigue, less energy
  • loss of concentration
  • change in sleep patterns
  • change in appetite
  • suicidal thoughts or attempts

Some factors that may further impact people with myositis include:

  • Physical limitations: pain, mobility issues, and reduced range of motion
    • This can lead to less physical ability, which can cause feelings of isolation.
    • Fear of falling.
    • Difficulty swallowing.
  • Career
    • Will I be able to fulfill the responsibilities in my current job?
    • How much do I reveal to my employer?
  • Relationships
    • One’s sense of identity can be altered: “Who am I now?”
    • Role in the family and with partner may change.
    • Intimacy can be affected, due to emotional and/or physical factors.
    • Making plans can be difficult, due to uncertainty of how you’ll feel and can lead to loss of friendships.

Myositis is rare and considered an “invisible illness,” where how you’re feeling and your physical limitations may not be obvious. This can lead to comments from others, such as, “You don’t look sick or “You look fine!” It can cause you to feel misunderstood and frustrated and alone.

A rare illness can cause you to feel insecure about your medical care. Many doctors may not be familiar with the myositis, which can then lead to a delayed diagnosis and, therefore, delayed treatment.

People with chronic illness often have several specialists, and communication might be lacking. Poor communication among providers is associated with the risk for increased depression.1

The impact COVID-19 has had on mental health

Anxiety, stress, worry, fear, loneliness, anger, and frustration have been heightened during the pandemic. It is important to understand that a key to building resilience is to acknowledge and accept that it is normal to have been experiencing a wide range of emotions at this time.

Research has shown that stress can have a negative impact on overall health.2 People under stress may express both mental and physical symptoms, such as irritability, anger, fatigue, muscle pains, digestive issues, and difficulty sleeping.3

Anxiety can be described as the unhelpful thinking patterns that are experienced when our minds fixate on threat, uncertainty, and negativity and can have both mental and physical symptoms.4 There is usually persistent and excessive worry that doesn’t go away, even when the stressor is gone.

What is important to note is that, you cannot control anxiety from happening, but you learn to control your response to it.

Things you can do to help control stress and anxiety

The following actions can help with stress and anxiety in general, and you may find them helpful during the pandemic:

Shift your focus to things can control

This can have positive influence on health and well-being.5

Some examples of what is in your control include:

  • following safety protocols, such as mask-wearing and frequent handwashing
  • avoiding large gatherings
  • continuing to follow advice from trusted sources
  • following your routine; practicing self-care; focusing on what is important to you; and seeking and offering support.

Examples of things outside your control include:

  • other people’s decisions and actions
  • the government’s actions
  • schools opening or closing, cancellation of holiday plans
  • traffic and weather

Use self-talk

One way that using positive self-talk can (“I have anxiety, but I am not controlled by it.”) be beneficial to calm feelings of anxiety is that the mind begins to adapt to positive thoughts as you keep practicing them.6

Practice building a tolerance for anxiety

By accepting that uncertainty is a normal part of life, we can learn to become more comfortable with it.

Create structure

It can be helpful to have routines each day: getting up and going to sleep at the same time, making your bed, eating meals at regular times, making time for self-care, connecting with others, and engaging in activities of daily living can be helpful at a time when it can feel harder to do so.

Be selective in media use

Limit your overall exposure to the media and choose one or two trusted and reliable sources.

Speak to people you trust

It is important to about how you are feeling.

Try to avoid all-or-nothing thinking

This is otherwise known as “catastrophizing.” If you tend to do this, try to redirect your focus your attention to reliable sources and facts.

Stay connected to others

Whether through phone or internet or other means, remember to reach out to others who may also be feeling more alone and isolated during this time. This is a way to help yourself and others.

Stay active

With the advice of your doctor, try to keep moving. We know that exercise can benefit both mind and body.7

Even in non-pandemic times, many people with chronic illness have learned to tailor their exercise routines to fit their specific needs, which often include home exercise. The good news is that you can continue this while remaining indoors. In addition to your own practices, there are many exercise options available online. But, please do remember to speak with your doctor first!

Practice mindfulness: focus on your breath; meditating for even a few minutes a day can help relieve stress and anxiety. Have kindness, compassion, and acceptance for yourself and others.

In times of great anxiety, when it may be difficult to focus, consider distraction activities, such as watching or listening to comedy, playing a game, cooking, calling a friend, indoor gardening, or going for a walk when possible.

Harness your religion or spirituality

This can be a source of strength, comfort, and community for many with chronic illness and may be needed even more during difficult times. The pandemic has caused many religious and spiritual institutions to close or limit access to in-person services; and people might feel greater concern for their health during this time.

During this time, we have had to learn to adapt and problem solve, to be able to continue with routines that we have found helpful and necessary for our emotional well-being. Many who were concerned about managing technology, have learned to “figure it out” with the help of friends and family members. Consider checking with your place of worship to see if online services are available, or speak with religious and/or spiritual counselor for further guidance.

Get outside help when needed

The tools provided above can help ease some of the stress, anxiety, and depression that has increased during the Covid-19 pandemic. However, you may find that you need more help to manage these emotions. During this time, and in non-pandemic times, you should feel no shame in seeking the mental health help that you may need.

In addition to speaking with your doctor about referrals, here are some outside resources to provide help:

  • In an emotional crisis, where you feel you may harm yourself or others, go to your nearest emergency room or call 911.
  • If there is a fear of self-harm, you can also call the National Suicide Prevention Hotline: 1.800.273.8255. Free, no-cost support is provided throughout the US, including Crisis Text Line (text: CONNECT to741741).
  • National Disaster Distress Helpline (DDH); provides crisis counseling and support for anyone in the U.S. experiencing stress or other mental health concerns related to any natural or human-caused disaster, including public health emergencies. Call: 1.888.985.5990 or text “TalkWithUs” to 66746.
  • Free Coronavirus Support for People for Chronic Illness Patients through Global Living Health Foundation COVID-19 Support Program for Chronic Disease Patients and Their Families.



Other References


Suzan Fischbein, LCSW
Sr. Social Work Coordinator II
Program Coordinator
Myositis Support Program
Hospital for Special Surgery 

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