“EB [epidermolysis bullosa] life is a life full of traumas, most of which we adjust to and eventually absorb and accept as our ‘normal.’ But the ability to name that trauma, know it is real, know there is something that can be done about it, for our children and for ourselves… that is a gift, that knowledge is power. And it is my hope that EB families and clinicians alike will take this knowledge, and start naming the trauma, work towards lessening the daily trauma when possible, and intervening when and where appropriate.”—Rebecca Boden, nurse, and parent of a child with epidermolysis bullosa
When a child has a medical condition, we cannot always prevent the emotional medical trauma that sometimes comes from the medical condition or treatment. In fact, millions of children with medical conditions and their family members experience medical trauma every year. While we can’t always prevent medical trauma, families can come together and build communities to support children and their families through these challenges.
I recently had the honor of speaking at the DEBRA Care Conference with Rebecca Boden, FNP, Ph.D., and EB Mom. DEBRA is an international organization dedicated to individuals with epidermolysis bullosa (EB) and their families. In brief, EB is considered a rare disease that involves connective tissue. There are a variety of types and severities of EB but a common challenge for individuals with EB is very fragile skin that can blister and tear easily. The DEBRA conference brought together hundreds of families with EB to discuss how to manage both the physical and emotional impact of EB. Meeting many of these families and learning of their love for their children and the support within their EB community, I left inspired.
Chronic medical conditions, such as EB, can result in children and their families being exposed to potentially traumatic situations in the context of their medical condition and care. These potential traumas can include a range of experiences such as a new diagnosis, a scary or painful medical procedure, or a challenge with the medical condition itself.
The National Child Traumatic Stress Network defines medical trauma as “a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences” (NCTSN, 2020). In other words, medical trauma is the emotional response to medical diagnoses or medical treatments. This emotional response can include body responses as well such as sweating, feeling nauseous, racing heart, or increases in blood pressure.
In brief, just like the more commonly known posttraumatic stress disorder (PTSD) symptoms (American Psychiatric Association, 2013), there are four primary categories of symptoms that often emerge for medical trauma: avoidance, re-experiencing, hyperarousal, and changes in mood or cognitions. See this post for more about what medical trauma is and how to recognize it.
One way that we can help with medical trauma symptoms is to rally social support and build our communities.
Who Can Help With What?
When facing emotional medical trauma, many kids, parents, and other family members might need different types of support. While there are many, many different types and different ways to describe social support, here are three types of support to consider: emotional support, practical support, and medical community support. Different people in your life might fall into different categories of support or might provide more than one type of support.
1.Emotional Support: Emotional support can be thought of as the support that can help to manage stress or challenging feelings that come along with having a medical condition or caring for someone with a medical condition.
- Who are the people that you or your child can call or text when you need to talk, vent it out, or cry?
- Who will show up and just be there?
- Who will visit your child in the hospital or if they are stuck at home?
- Who will take a walk or help distract you from the tough stuff?
2.Practical Support: Practical support is the support needed to manage day to day.
- Who can you call to do a grocery run or pick up your child’s medications?
- Who can give you a hand with child care for your child with a medical condition and/or your child(ren) without medical conditions?
- Who can start a meal train?
- Who can remind you about the school open house/orientations/assignments due?
3. Medical Community Support: This is the type of support that can be helpful when you have questions or want to know others’ experiences about a child’s specific medical condition. Consider the team of professionals that help you care for your child and yourself as part of your support network. Also, consider professional organizations or other families who have experience with your child’s medical condition. This could include:
- Primary care/family doctors, pediatricians, nurses, therapists, and other healthcare team members
- Mental health counselor
- A professional organization that supports children, parents, and families
- Local support groups
- Online support groups
- Annual family conferences
I Want to Know More
Here are some resources to learn more:
The ideas in this post and resources are not a replacement for mental health care. If you are worried about your own or child’s behaviors or emotions, reach out to your doctor for help.