After writing a term paper about PTSD in one of my classes, I found that of all the possible symptoms, there were a couple I felt I could really identify with. Sense of foreshortened future, problems with self-esteem and self-image, and something called survivor guilt. (2)(3)
Survivor guilt, also called survivor syndrome, was first used to describe why people felt disinterested in life and guilty that they had survived when their family members had died after the Holocaust. Since then the term has expanded to include those who have been involved in catastrophes or disasters where many others died.
I’ve felt this guilt before. It began sometime in my early teen years when I started to seriously think about what having a transplant actually meant. When it hit me that another child died and I am living because they are dead, the guilt started. One of the reasons why in 22 years I still have not written a thank you letter to my donor’s parents and family is because I’m afraid that I won’t be able to confidently say I was worth it.
But to say that implies I caused my donor’s death. It took a great deal more thinking and maturing to realise I didn’t. My donor would have died if I had been around to need his or her organs or not. Still, I find the realisation to be hollow. Sometimes I wonder why Darwin’s theory of survival of the fittest doesn’t always seem to apply anymore. I was the sick one, my body was flawed and weak, yet a perfectly healthy child has a terrible accident and suddenly I am the one who is going to live.
Every February when I reach another anniversary of my liver transplant I look at my scar and wonder about my donor. I wonder what things they liked. I wonder who they would have grown up to be. I wonder how much their family misses them. I also wonder if the life I am living honours their gift to me, as if the things that I do somehow prove that I am worthy of my second chance at life.
After my heart transplant this past November, I experienced a new aspect of survivor guilt. I didn’t feel guilty that I lived because my donor died. Instead, my group of friends from the cardiac rehab I go to came to mind. The group is a mix of heart transplant recipients and people headed toward the heart transplant list. For the first time in my life, I feel like I actually have friends who can identify with what I’ve gone through.
It’s the sense of belonging I’ve been looking for since I was a girl, seeking out books to read about others who had a chronic illness. Although I hate admitting it now, for a time I was hooked on Lurlene McDaniel’s books. If you haven’t had the pleasure of reading them, McDaniel’s books are defined by their tragic romances that involve illness and passion and, more often than not, untimely death. Very dramatic.
Reading them was like entering a whole different world. A place where teens had friends who shared the challenges of hospital life, living with a chronic illness and regular life. I read about people who had cancer or cystic fibrosis whose friends died from the same illness, but while I could emphathize with the grief felt when a loved one dies, I didn’t really understand the intensity of it – until after my heart transplant.
Because suddenly it’s like I’m looking in a mirror. My friends from cardiac rehab have their heart issues for different reasons than I do, but regardless of the cause, the outcome is simillar. Drugs or transplant, or drugs, then transplant. After my heart transplant, even with everything I know about transplants and how they don’t always work out, I still felt incredible guilt that I got my new heart and my friends were still waiting.
Surviving my donor was inevitable because I had a heart transplant, but surviving my friends – especially when I know I could have easily been in their shoes; the thought was and still is terrifying. That is the worst survivor guilt of all: why me and not them?
1. Terr LC. Childhood traumas: an outline and overview. Am J Psychiatry 1991;148;1:10-20.
2. Wintgens A. Posttraumatic stress symptoms and medical procedures in children. Can J Psychiatry 1997;42:611-616.
3. Andrykowski MA. Psychiatric and psychosocial aspects of bone marrow transplantation. Psychosomatics 1994;35:13-24.