04/24/2024
SURVIVOR GUILT. The Ghost that Haunts Us.
Karen Stacy, President, Happy Liver Society
Address correspondence to:
Karen Stacy, (insert mailing address, telephone and email)
I underwent a liver transplant many years ago and 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 would see 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 friends 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 with bad feelings and
unfortunately some people never get past this feeling of survivor guilt and it consume their lives
with disastrous results. It is my hope that by sharing some 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.
SURVIVOR GUILT. The Ghost that Haunts Us.
Karen Stacy, President, Happy Liver Society
Address correspondence to:
Karen Stacy, (insert mailing address, telephone and email)
I underwent a liver transplant many years ago and 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 would see 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 friends 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 with bad feelings and
unfortunately some people never get past this feeling of survivor guilt and it consume their lives
with disastrous results. It is my hope that by sharing some 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.
