Survivor guilt. The ghost that haunts us

I underwent a liver transplant many years ago. I would have died without it, yet guilt from surviving and being alive is real. Let's call it ‘the ghost’. The ‘ghost’ has many strange ways of showing up. Sometimes you don’t even realize it is there until someone says something that makes you aware that it is standing right in front of you and is causing you to feel the way that you do.

This is my personal experience with the ‘ghost’:

‘In my case, a family that I am close to for most of my life had a loved one that was badly in need of a life saving transplant. I never knew about this until I found out that I too was sick and in need of a life saving transplant as well! I tried going to different agencies and professionals in hopes of an answer to my questions about coping with my liver issues that the doctors could not answer, but that never happened. Then my friend, who was like my family, came to the rescue with answers I so badly needed to know. For the first time, I was getting information that would help me figure out what's next, how to cope, and, most importantly, for the first time I had hope. Sadly, within a few months my family friend was gone. He never got his second chance. I wondered if I would suffer the same fate – death from liver disease. His wife, whom I’ve know since I was 4 years of age, was understandably devastated by his passing, as were all his family and friends. For me, this person, who I had only ever spoken to on the phone but had made such an impact on my life in such a time, was my hero and he was gone.

As in most tight knit communities, as families we would stay in each others lives. After my transplant, I didn’t understand what was going on until I noticed that every time I saw her I would say a quick hello and go the other way in a hurry. Silly but it never occurred to me why. Then, at a mutual friend's birthday celebration she approached me and softly asked me what was wrong. Why did I not engage in conversation with her anymore. What came out of my own mouth surprised me. I just blurted it out: ‘I thought I made her feel bad because I lived and her husband didn’t, and I felt guilty’.

She is a very kind woman and had kind words to say to me, the words were few but very meaningful. She said ‘Please don’t ever feel that way because we are all happy that you’re still here’. I think both of us felt better after that, but more therapy in regard to these feelings of survivor guilt needed to happen after the transplant. The ‘ghost’ is very real and needed to be dealt with.

I think of my donor and their family every day. I knew from the start that, while my family was rejoicing in my having been brought back from the brink of death, the family of my donor was grieving their loss. Although we need to be appreciative, the truth is we meet many people, talk laugh with them, see them all the time, in the pre-transplant clinic waiting room and don’t see them in post-transplant clinic. They did not make it. That leaves many with bad feelings and unfortunately some people never get past this feeling of survivor guilt and it consumes their lives with disastrous results. It is my hope that by sharing this, the liver and transplant doctors can shed light on these issues, research it and benefit us transplant patients. Maybe then, the ‘ghost’ will move on.

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