As the parent of a newly diagnosed child, you might feel overwhelmed and worried. These are normal reactions. You might want, and need support, from others who have been, or still are, on this same journey. Support is helpful so you can be a better advocate for your child and learn to manage your own feelings.
We know that a chronic illness can bring on more heightened feelings, especially of depression and anxiety in yourself and your child. You will find resources here for: those warning signs, as well as resources for help with them. Additionally, you can learn new coping skills, build on current ones, and develop resilience.
We also know that a JDM diagnosis effects all members of the family and you will find other resources for them here, as well.
According to a 2017 article by pediatric rheumatologists, Alaina Davis, Tamar Rubinstein, Andrea Knight and Martha Rodriguez, “Beyond the long-established detrimental impact that chronic disease has on an individual’s mental health, we now appreciate that the relationship between chronic physical disease and mental illness is bidirectional.” 1
To understand how our JM families cope with mental health, we collaborated with Andrea Knight, MD, MSCE, an expert in the autoimmune and mental health fields. We surveyed Cure JM patients and parents on the “Mental Health Needs of JM Patients and Potential Interventions,” and found that 28% of JM adolescent and young adult patients reported depression and 33% reported anxiety. 2
- 1 Mental Health Care for Youth with Rheumatological Diseases — Bridging the Gap
- 2 Rates of Depression, Anxiety and Suicide Ideation Elevated in Adolescent Rheumatology Population
- Tips for Parents Helping Their Child Cope with Chronic Illness
- Children with Chronic Illness: Dealing with Emotional Problems and Depression
- Sibling Support (Sibshops)
- About Self Care for Parents of Chronically Ill Children
- Kids & Teens with Special Health Care Needs – Family Resource Brief
- 8 Children’s Books to help you Talk to Your Child about Mental Health
- Tiger Livy — a book about a child with JM
- Building Resilience in Children
- Chronic Conditions & School
- More Resources for Supporting Families Coping with Chronic Illness
- Resources in Your State
- At the Hospital: Helping My Child Cope
- After the Hospital: Getting Back to a Schedule
- After the Hospital: Helping My Child Cope
- Después del Hospital: Cómo retomar las actividades diarias
- Después del Hospital: Cómo ayudar a mi familia a superar la situación
“Juvenile Myositis, like other chronic rheumatologic diseases, can affect the child and extended family (parents/ siblings) in many ways. We see a lot of patients with myositis grapple with the emotional or mental health aspects of chronic illness. Parents / caregivers and families likewise may need emotional or mental health support as they care for their loved ones with a chronic illness. From the beginning of diagnosis we want patients and families to understand that it is normal to have a range of feelings and that emotional health is as important as physical health. Cure JM has made it part of their mission to advocate for the mental health needs of these patients and families by providing resources and support. I am grateful for their commitment to not only finding better treatments for juvenile myositis, but also supporting the mental health needs of these patients and families.”