Dealing with chronic illness can challenge anyone. At times families and individuals may need someone other than a friend or family member to help deal with the stresses this may be adding to their lives. Options range from private professional help to moderated group discussions and more. Learning appropriate coping strategies, having an empathetic person listen to your concerns or getting help managing day to day problems may improve your self esteem making it easier to care for another living with chronic illness. Addition help may be needed for the affected person who may also need support, counseling or someone to talk to outside their immediate circle of care.
Helpful Links
- ARCH Respite Locator
Searchable state respite services - Bandaides & Blackboards
Website focused on families dealing with chronic illness. Many stories written by and for patients and families dealing with chronic illness. - Caring Bridge
Personalized website designed to keep friends and families informed about a loved one’s status - Compassionate Friends
The Compassionate Friends provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family. - Depression and Disability: A Practical Guide
The North Carolina Office on Disability and Health - Disability Resources
Connecting people with disabilities, their families and caregivers to resources - Family Caregiver Alliance
Searchable state resource locator for family caregiver services - How to Cope with Sudden Illness
Tips on developing coping mechanisms for sudden illness/disability - Intensive Care
A book by Mary-Lou Weisman about loving and caring for a child with Duchenne Muscular Dystrophy - National Alliance on Mental Illness
NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. - National Federation of Families for Children’s Mental Health
The National Federation of Families for Children’s Mental Health is a national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. - MentalHelp.net
MentalHelp.net aims to provide online mental health and wellness education. Their hope is to spread awareness through advocacy of mental health by providing scientifically accurate and up-to-date coverage of mental health and illness topics. They intend to educate, catalog and provide mental health information that compliments, but does not replace, the medical advice of personal medical professionals. - Parenting a Child with Special Needs
National Information Center for Children and Youth with Disabilities article from a parent of a child with a disability - The Life of Riley Living with Duchenne Muscular Dystrophy: Through A Mother’s Eyes
A book by Dianne DeMille and Nina Stuart Herrera about Riley’s journey to age 31 living with Duchenne and a heart transplant at age 14.
For Siblings
- A Sibling’s View
MP3 download of a presentation from siblings of children with Duchenne - Sibling Leadership Network
Sibling Leadership Network promotes a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the lifespan enabling them to be effective advocates with their brother and sister, and to serve as change agents for themselves and their families
Looking for state-specific resources? Check out our state-specific page
What resources would you like to add or update?
Email your suggestions to resources@parentprojectmd.org!
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