CFIDS Suicides Shock YPWCs
By Vicki L. Carpman
Youth Allied By CFIDS, Fall 1996
The August 15
assisted-suicide death of CFIDS patient Judith Curren sent waves of shock
through the CFIDS community. Deaths of persons with CFIDS (PWCs) are always
difficult to face, yet this one was especially difficult because of the public
nature of it. The media jumped head-first into the story, highlighting the
controversial nature of CFIDS and downplaying the pain and suffering associated
with the disease.
Still recovering from Curren's
death, the CFIDS community was again distressed by the September 9 suicide of
PWC Joan Luther Irvine, a frequent contributor to the on-line networks and a
friend to many PWCs.
These two deaths provoked
cathartic outpouring of grief on the computer networks, at support group
meetings, among friends and families, and anywhere else PWCs met. They also
brought on a reaffirmation of living with CFIDS and fighting the disease.
Following are excerpts of letters we received from two young persons with CFIDS
and a CFIDS therapist, and a poem by a YPWC written in response to these
Heather F., Cambridge,
"I've been sick for a long
time now, 12 years to be exact, and a lot of those years were spent lonely and
scared and angry. I always considered suicide to be a last-ditch option;
sometimes I would even berate myself for not having the guts to do it. Those
were dark days, and I can always empathize when I hear of a CFIDS suicide.
Somehow, there was always something small to pull me through the times I
wanted to end my suffering - a silly sitcom, a joke from my brother, my mom to
comfort me, even my dad curling up into a ball and howling with such a mocking
flair that I had to laugh.
"Suicide is no longer an
option for me. Any such thoughts died when my friend Allie did - she fought
severe CFIDS to the end, hanging on to life fiercely and through great pain.
When her life was taken from her, not by her own hand, but by this disease in
its most violent form, I knew that giving my life away was impossible. The
pain a death causes reaches far beyond anything I could have ever imagined. I
think a little piece in each of us dies when we hear of a CFIDS-related
suicide. 'There, but for the grace of God, go I,' I would think. But no more.
I will not hurt my family and friends and the world like that. I will fight. I
will live. I will survive. And one day, one day, I will be healthy again."
Sandy B., Ann Arbor,
"When I hear that a person
with CFIDS has decided to end his or her life in suicide, I am filled with
sadness and desperation. This person was one of us, a person with CFIDS. I
often wonder if there's anything the CFIDS community could have done to
prevent such a tragedy - or what should we be doing now to make sure it never
"I understand the pain and
frustration of CFIDS. I understand the devastation when doctors throw their
hands up in the air and say they don't know what else to do. I know when that
happens to me, I just want to scream at the doctors, 'But I'm suffering here -
you can't just walk away from this.' I want to scream about how unfair it is
that they can so easily walk away and give up on me - don't they remember that
I can't walk away, that I am a human being who has to live with this every
day? It's hard to not give up on yourself when other people do. It's very hard
when the pain is at its worst, and the energy just isn't there, to hold on to
that hope and faith that there will be better days. Sometimes the only thing
left is to just live minute by minute, and try to hang in there the best I can
through the most difficult times.
"All CFIDS suicide deaths
should be wake-up calls to the medical community to take CFIDS more seriously,
and to try to understand the desperate needs of patients for hope and help.
And these deaths should be reminders to CFIDS patients and their friends &
family that we all need to support each other, and constantly reach out in
whatever way we can. Battling the devastation of CFIDS is not something that
anyone can possibly do without a lot of love and support."
Linda Miller Iger,
Laguna Beach, CA, psychologist:
"This disease takes every
ounce of willpower and perseverance to fight on a daily and minute-by-minute
basis. We need to label as heroes those who stay alive and fight, those who
get up and struggle with this disease each day. .We should honor the patients
who persevere, who wake up and know it will be a rough day, but get up anyway.
I toast to you, the courageous. My heart breaks for the young daughters, sons,
husbands, wives, sisters, brothers, mothers, fathers, friends left behind by
"If you feel desperate, get
help. The first choice would be a therapist experienced with helping those
with chronic illnesses. Other therapists can help, too. If you can't afford
private counseling, many local religious and community organizations provide
low-cost or no-cost professional help."
to "The Desperate
Moments: Suicidal Thoughts" by Sharon Walk