Emotional Health, Coping, Resilience, and Juvenile Myositis

By Cure JM Board Member Suzanne Edison, MA, MFA

I am sure that my story will be familiar to many of you. I will tell you how the diagnosis of JDM not only affected me and my child, but what we at Cure JM, have done, and are doing, to make the emotional health of our kids a priority.

In this time of the COVID-19 pandemic, we need to be especially vigilant about the emotional health of our children. Moreover, these are great times of stress for most of us, and so it is equally important that we do what we can to support those around us whom we love — spouses, partners, or other family members who may be in distress.  

Look after yourself, too. Even Supermoms and Superdads may need to take steps to help themselves from feeling overwhelmed.  

I have a background as a psychotherapist, but when my daughter was diagnosed in 2007 I was completely overwhelmed and in shock. In some ways the diagnosis was a relief; at least now, after more than a year, we knew what we were dealing with and we discovered there were treatments. However, I was not prepared for all the changes, both emotional and psychological, that this diagnosis wrought on both me and my daughter. After a month or more I knew I needed to talk to someone who’d been through this journey and was able to assure me that my feelings were normal. I was feeling very alone, not sleeping or eating well, nor thinking as clearly as I might. I cried a lot. There was so much to learn and to do. I felt scared about the future for my child, felt guilty I hadn’t found a diagnosis sooner, and a host of other emotions including anger, sadness, grief.

I can’t imagine how much harder this might have been had all of this been happening in the midst of a health pandemic.

Talking to one mom made me realize that if I, a trained therapist, needed support it was likely other parents were feeling and needing the same thing. I began a support group at Seattle Children’s Hospital in 2008 and led it for seven years. In that same time, I began to see that my child also needed more support than I could give her. We all know how JM can change our kids' appearance with steroids, rashes, or calcinosis. We know they are “different” than most kids their age as they must wear sunscreen and protective clothing, they may be weaker and not able to participate in sports or other social activities at the same level. We also know that the time spent at doctors or in hospitals robs them of some of their childhood fun. And for many, the treatments, shots and infusions and side effects of the drugs, can be traumatic. Often their experiences are invisible to others. Anxiety, depression and thoughts of self-harm are not uncommon for our kids. We can now add isolation and fear of COVID-19 exposure and infection to the list. What to do?

We, at Cure JM, began moving forward on this issue a few years ago. Initially we provided Coping Skills workshops at our annual conferences for parents, along with support groups for teens, and siblings, but we knew it wasn’t enough. JM affects the whole family, and each member differently. Now, we are taking a multi-pronged approach for our kids and parent needs.

A few years ago, we collaborated with Andrea Knight, MD, MSCE, a rheumatologist and leader in mental health research for kids with Lupus, to help us begin documenting the needs of our families. In order to understand how our families cope with mental health, we surveyed Cure JM patients and parents on the "Mental Health Needs of JM Patients and Potential Interventions” and found that from the 58 replies, 28% of JM adolescent and young adult patients reported depression and 33% reported anxiety. These percentages are 2-3 times higher than the 2016 national average of depression in adolescents (12.8%) and young adults (10.9%), according to the National Institute of Mental Health.

  • ln 2018 we again engaged Dr. Knight to help Cure JM. We provided focus groups at our annual conference. We had six focus groups of parents, of youth between the ages of 6 and 21 years diagnosed with JM, give us parent perspectives on mental health. Again, the results were striking, and varied by age, severity and length of disease activity.
  • The most common emotional health experiences of youth reported by parents were depression, anxiety, and strength/resiliency.
  • The most desired interventions included counseling and peer support groups.
  •  Factors contributing to depression, anxiety, and strength changed over time, corresponding to developmental age and phase of disease.
  • Parents desired coping skills and counseling throughout the disease course, from diagnosis into stable disease, with increased support at disease flares.

What You Can Do Now

Here are 3 things parents can do now in our COVID-19 environment.

  1. Routines are important when dealing with children with chronic illnesses and even more important now as our “new normal” has shifted again. Routines help provide consistency and can help reduce anxiety; if we know what to expect, we aren’t as anxious. Make a schedule, if possible, that everyone can follow. When are medicines taken/given. When is school online time, and when is “play” time. When is whole family time and when do mom or dad need to be at work at home. Engage each member of your family in making this schedule. Having some control over decisions is another way of reducing anxiety.
  2. Depending on the ages of your kids, give them facts about COVID-19. See what questions they have and answer them honestly and simply. Ask how they are feeling and listen. Reassure them that you are doing everything you can to protect them because that is our job as parents.
  3. Parents also need to take care of themselves. Schedule some time with a friend or family member via Zoom or FaceTime. Reduce your media intake of virus information. If it’s possible, take a walk around the block, alone or with one other person, respecting social distancing of six feet. The more we can manage our own feelings, the better it is for our kids. They will pick up on our anxiety or our calmness.

 Here are a few resources with information that reinforces and adds to what we’ve recommended above. I hope they help.