In the preceding blog, we considered the importance of recognizing medical illness as psychological trauma.
Diagnosed with a rare disease, Stevens Johnson Syndrome, at age thirteen, Michele journeyed through two decades of undiagnosed PTSD to eventual recognition, recovery and support of many as the founder of www.healmyptsd.com.
What she offers in lessons learned is of value for parents of children who have faced illness, as well as adults who wonder how they will ever reclaim their bodies, heal their sense of self and take a new self into the future.
Michele, your journey from illness started when you were only thirteen. Parents suffer so much when they see their children suffer. How did your parents respond?
My parents were phenomenal! They were there in a very active way. Their presence next to me, their translation of what was happening to me, their role in helping the staff understand me in a certain way were all crucial to my safety and comfort.
Could they have done anything different?
Although my parents seemed to recognize that there might be a psychological impact, they did not receive professional support. They were told that children are ‘resilient’ and that they didn’t need to worry about my emotional state. My mother had insisted that I speak to a psychologist before I left the hospital. I refused to speak with the women. I was thirteen! But in reality I was already struggling with fears and insomnia.
This sounds like a real challenge for the parents as well as the child. What suggestions would make for parents? (Summary of Michele’s Suggestions)
- Recognize the power of your presence in creating comfort and safety for your child. (My parents took turns)
- Help your child or teen feel less helpless and powerless when ill by giving them decision making even over small things – from stories read, to color of Jell-O, to music played.
- When your child returns home and back to school, support resilience and return to normal life but don’t be afraid to talk about what happened.
- That said – I wouldn’t talk! Trauma can be very difficult to talk about. Most adults have trouble much less kids. I saw over the years, with therapists and others who have shared with me, that it can be helpful to use other modes of expression to re-visit and heal from trauma as drawing, writing, dance, drama, role-playing, puppets etc.
- Involve your child in understanding that sometimes we recover for a while in different ways after an illness. Encourage them to tell you about changes they see, feel, sense – even the strangest things so that they feel all right talking about things.
- Be aware of changes that you observe in your child including emotional swings, sleep disturbances, attitude shifts, new fears and anxiety and reactions around anniversaries of the illness.
- Learn about trauma and get professional support and guidance for yourselves. You have been through so much. The more help you get the more it filters back to your child and your other children. Most kids don’t want to stay the “ identified patient!”
Michele, a poignant point in your memoir is your comment “My life became my illness and management of my illness became my life.” I have heard this from so many who have battled illness – is there a way around this?
That refers not only to my original life-threatening illness but also to two decades of PTSD manifested in stomach, intestine, liver and bone dysfunction with hospital stays and endless tests.
When you are a chronic patient, every day requires coping with pain and fear of not feeling well or feeling worse. I don’t think there is a way around it, but I think there is a way through it.
I think that a dedication to self-care, to things that restore energy and soothe, is crucial. I developed a habit of transcendental meditation that I still continue today because of its benefits in grounding, centering and strength building.
From your own experience and the many survivors and experts with whom you have spoken, what would you suggest as strategies for healing the psychological trauma of medical illness?
Understand, realize and commit to the fact that you have to participate in your own recovery. I went from practitioner to practitioner waiting for them to cure me. To heal I had to participate in the work.
Communication is key. Allowing people in any way you can to understand what you’re thinking and feeling allows them to learn how to avoid triggers and be supportive rather than destructive in their efforts to help. Lists, letters or emails can be effective in putting out your ideas in a way that feels safe if a discussion feels too overwhelming.
Let go of the survivor identity. I have heard so many survivors, including me, say “Who will I be if not this person?” Trust that there is much more to you.
Accept that recovery takes time. There is no prescribed process or time frame. This can be extremely nerve–wracking and demoralizing when you want to move to a place of wholeness and well being. I went from desperation to taking what I could from different treatments and therapists. Back then I couldn’t see that I was actually moving.
Choose trauma trained professionals who have a deep understanding the recovery process and keep educating yourself about trauma recovery.
Build a support system of family and friends so that you are not alone in your quest for recovery.
Seek some way to connect to something joyful. Part of conquering the past is connecting to the present and creating the future. Truly experiencing joy is an expression of your authentic self.
Michele, after years of suffering, your personal connection to joy was through dance. Why did that work for you? ( Summary of Michele’s Response)
- My body and I had such a poor relationship – I hated it, and who knows! It broke down a lot and surprised me in unhappy ways so often that I severed a connection to it or love for it. Dance forced me to work in and with my body in a pleasant way.
- Dance also made me wholly focus in the present moment, which I needed to learn how to do. The present had been so unpleasant for me for so many years that I wasn’t present very often. With dance I was connecting in the moment and staying there.
- Recovery involves coming back to being a whole person instead of remaining several splintered pieces. I think there are many different ways people can achieve this goal. I encourage others to find their way.
“When I started dancing I only thought I was chasing joy. I didn’t expect to find self-unity.” (Before The World Intruded)
- Sometimes we wonder why life has thrown an unexpected curve into what we had expected would be a smooth journey.
- When it is medical illness it can make the journey physically and emotionally very difficult.
- What Michele Rosenthal offers is the message that commitment to healing, sharing with others, and reaching for moments of joy can lead to a whole and healthy self.
You are in the company of many as you reach beyond illness to find yourself.
Teen girl photo available from Shutterstock.