CFIDS Suicides Shock YPWCs

By Vicki L. Carpman

Originally published in 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 a 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 tragedies.

Heather Frese, Cambridge, OH, YPWC:

"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 Becker, Ann Arbor, MI, YPWC:

"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 happens again?

"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, PhD, 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 these deaths.

"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."

Go to Poem by Nichole Foster

Go to "The Desperate Moments: Suicidal Thoughts" by Sharon Walk