Losing Hope with FM/CFS: Finding the Road Back

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FM and ME-CFS - The Road BackIf you or someone you know is feeling hopeless, or may even be having thoughts of suicide, you do not have to go it alone. Suicide is preventable, and there are many resources and people who are dedicated to providing the support you need. (Beginning with the list of contacts and links at the end of this article.)

Killing Me Softly: FM/CFS & Suicide

By Lisa Lorden Myers

This article was originally published in Fibromyalgia Frontiers, the journal of the National Fibromyalgia Partnership – and is reproduced here with kind permission from Bruce Campbell’s CFIDS & FM Self-Help website (www.cfidsselfhelp.org).* Lisa Lorden Myers, a CFS/fibromyalgia patient from California, is a well-known writer. For three years, she was the Guide to Chronic Fatigue Syndrome and Fibromyalgia at About.com.

On August 15, 1996, Dr. Jack Kevorkian reportedly assisted in the suicide of Judith Curren, 42, of Pembroke, Massachusetts. She suffered from chronic fatigue syndrome (CFS) and fibromyalgia (FM). Jan Murphy, another FM sufferer, also turned to Kevorkian for help; ABCNews.com later reported her assisted suicide in the summer of 1997.

A recently publicized investigation in the UK revealed that [in 2003], Julia Revill, age 58, hanged herself outside her family home after becoming frustrated at a lack of medical help for her Myalgic Encephalomyelitis (ME). ME is the name used abroad for chronic fatigue syndrome. She had shown some improvement after treatment at the UK’s only ME hospital in Essex but had been refused funding by the local health authority for further treatment there, and her condition deteriorated.

The loss of “one of our own” always hits hard. These and other reports sent shock waves through the FM/CFS community.

Patients with fibromyalgia and chronic fatigue syndrome have an exquisite understanding of the pain, both physical pain and emotional anguish, associated with having a poorly understood, incurable disease.

“When you start hearing there is no hope, no treatment, and no cure over and over, you lose your will to fight,” wrote Jan Murphy in a eulogy read at her funeral. “What most people saw of me was a shell of what was going on inside.”

The FM/CFS community is certainly not alone in addressing the problem of suicide. Each year, nearly 30,000 people in the United States take their own lives. It is the 11th leading cause of death in our country and accounts for more than 10% of all deaths in the US.

Suicide and FM/CFS

It is unclear whether there is an increased risk of suicide among FM/CFS patients, as compared to the general population. No specific data exist about the number of FM/CFS-related suicides.

However, there is evidence that chronic pain and illness put patients at risk for suicide.

According to the CFIDS Association of America, experts studying 80 suicide cases in the state of Washington suggested that physical illness, including cancer, heart disease and arthritis, contributed to half of those suicides.

An illness like fibromyalgia or chronic fatigue syndrome, which is often doubted or neglected by the medical community, the public, and sometimes family and friends, can present unique problems. Patients with FM/CFS can become victims of isolation and despair.

Secondary depression is a well-known symptom of FM/CFS and is common with any type of chronic pain.

Sufferers depend on a variety of sources of support, including pain management, psychological support, and financial support. When one of these essential needs remains unmet over a long period of time, it is possible for patients to begin to believe that their situation is hopeless.

In fact, a recent report published by Action for ME, a UK non-profit organization, revealed that 51% of survey respondents have felt suicidal as a result of their illness. Those with the most severe cases of the illness and who received delayed diagnosis and management were most likely to have considered suicide.

Responding to Suicidal Thoughts

Martha Ainsworth, founder and director of Metanoia [www.metanoia.org], a non-profit organization dedicated to suicide prevention, describes the problem of suicide succinctly. She writes, “Suicide happens when pain exceeds resources for coping with pain.”

There are many kinds of pain that may lead to suicide, and individuals vary greatly in their capacity to withstand pain. According to Ainsworth, you can survive suicidal feelings if you do either of two things:

1. Find a way to reduce your pain,

2. Or find a way to increase your coping resources.

Both are possible. It is important to realize that suicide is a permanent solution to a temporary problem.

The Journal of the American Medical Association has reported that 95% of all suicides occur at the peak of a depressive episode. For many people who feel suicidal, there seems to be no other way out. But suicidal thoughts are typically a reflection of distorted thinking caused by severe depression or even by the neurological changes associated with FM/CFS itself.

Warning Signs of Suicide

• Talking or joking about suicide or statements about being reunited with a deceased loved one

• Making statements about hopelessness, helplessness, or worthlessness (“Life is useless” or “Everyone would be better off without me.”)

• Preoccupation with death (recurrent death themes in music, literature, or drawings)

• Appearing suddenly happier or calmer

• Loss of interest in things one cares about

• Unusual visiting or calling people one cares about (saying good-byes)

• Giving possessions away, making arrangements, or settling one’s affairs

• Self-destructive or risk-taking behavior (alcohol/drug abuse, reckless driving, self-injury or mutilation).

When we are depressed, we tend to see things through the very narrow perspective of the present moment. A week or a month later, things may look completely different.

Most people who once thought about killing themselves are now glad to be alive. They say they didn’t want to end their lives – they just wanted to stop the pain.

According to Dr. William Collinge, PhD, author of several books including Recovering from Chronic Fatigue Syndrome, “If you can remind yourself that the suicidal thoughts or feelings are transitory and symptomatic of the illness, this will help you get through those times when you are in the bottom of the pits and can’t see any way out. Also, talking about your feelings with a confidant or loved one can help immeasurably.” [William’s encouraging book is available free online at http://collinge.org/Cfs.htm]

Experts agree that talking about suicidal feelings is one of the most important things you can do. Talking to a caring and supportive friend or family member can be helpful, and there are a variety of help lines and support groups to whom people who are feeling suicidal can reach out. Severe depression, the primary cause of suicide, is highly treatable. If depression is recognized and treated, many suicides can be prevented.

Anyone who has suffered with fibromyalgia or chronic fatigue syndrome knows that it requires a huge adjustment, not only to the illness itself but to all the consequences it has on our lives.

Chronic illness is likely to affect the way sufferers live, the way they see themselves, and how they relate to others. With the present state of world events, many people are feeling additional tension, anxiety, or sadness. But suffering with severe depression may be unnecessary. If you or someone you know is having thoughts of suicide, it’s essential that you know you don’t have to go it alone.

What You Can Do if You See Possible Warning Signs of Suicide
(Adapted from information provided by SAVE – the American Association of Suicidology and Suicide Awareness Voices of Education www.save.org)

Be direct. Talk openly and matter-of-factly about suicide. It’s okay to ask the person, “Do you ever feel so badly that you think of suicide?”

Don’t worry about planting the idea in someone’s head. If someone has been thinking of suicide, she will be relieved and grateful that you were willing to be so open and nonjudgmental. It shows her you truly care and take her seriously.

Be non-judgmental. Listen attentively, allow expression of feelings, and accept those feelings. Don’t debate whether suicide is right or wrong or whether feelings are good or bad. Never call someone’s bluff or try to minimize his problems by telling him he has everything to live for or how hurt his family would be. This will only increase his guilt and feelings of hopelessness. He needs to be reassured that there is help, that what he is feeling is treatable, and that his suicidal feelings are temporary.

Take it seriously. Always take thoughts of or plans for suicide seriously. If someone admits to thinking about suicide, question the individual further and ask, “Do you have a plan?” “Do you know how or when you would do it?” If you feel the person is in immediate danger, you must make sure that he or she is not alone and can talk to a professional immediately. If necessary, call 911 or take the person to a crisis center or emergency room. Remove means, such as guns or stockpiled pills.

Never keep a plan for suicide a secret. Don’t worry about breaking a bond of friendship at this point. Friendships can be fixed. A suicidal person must see a doctor or psychiatrist immediately.

Offer support. If you feel the person isn’t in immediate danger, you can say things like, “I can tell you’re really hurting” and “I care about you and will do my best to help you.” Then follow through – help her find a doctor or a mental health professional. Offer hope that alternatives are available, but don’t offer glib reassurance.

Get help. Seek support from individuals or agencies specializing in crisis intervention and suicide prevention.

Suicide is preventable, and there are a variety of resources that can provide the support you need.

* * * *


The Anatomy of Hope
How to keep hope alive, even when you have an illness with no cure.

Taming Stressful Thoughts
Describes a three step process for changing negative “self-talk.”

• <a href="http://www.cfidsselfhelp.org/library/8-seek-support-understanding

” target=”_blank”>Seek Support & Understanding
Practical ways to start dealing with feelings of isolation, being a burden, not understood, guilt, and fear.

Managing Stress and Feelings in Families Coping with ME/CFS and FM
Bruce Campbell offers insights he’s developed over the years, beginning with on his own experience as a CFS sufferer working through the grief, uncertainty and depression that are normal reactions to serious illness.

Seven Strategies for Managing that ‘Fibro Guilt’


Suicide Awareness Voices of Education (SAVE)

Befrienders International

American Association of Suicidology

Suicide: Read This First

National Hopeline Network
1-800-SUICIDE www.hopeline.com

(From the ProHealth Message Boards)


In the US: Here is the toll free number for the National Suicide Prevention Lifeline
1-800-273-TALK (8255) or call 911

In the UK: HopeLine UK: 0800 068 41 41 or call your emergency number equivalent to 911 (I think it’s 999 there)

Some really good ones for discussion, information and help.

http://suicideinfo.ca (in Canada) This site also has a quick-link to phone numbers of all the Crisis Centres in the country.

http://www.yellowribbon.org (US, teen suicide prevention experts)

http://www.papyrus-uk.org (in the UK) Prevention of Youth Suicide

http://www.suicidepreventionlifeline.org Network of 120 centers across US.
“The National Suicide Prevention Lifeline is a 24-hour, toll-free suicide prevention service available to anyone in suicidal crisis. If you need help, please dial 1-800-273-TALK (8255). You will be routed to the closest possible crisis center in your area. “With over 120 crisis centers across the country, our mission is to provide immediate assistance to anyone seeking mental health services. Call for yourself, or someone you care about. Your call is free and confidential. “Para obtener asistencia en español durante las 24 horas, llame al 1-888-628-9454

”Why should I call the Lifeline? From immediate suicidal crisis to information about mental health, crisis centers in our network are equipped to take a wide range of calls. Some of the reasons to call 1-800-273-TALK (8255) are :
     – Call to speak with someone who cares
     – Call if you feel you might be in danger of hurting yourself
     – Call to find referrals to mental health services in your area
     – Call to speak to a crisis worker about someone you’re concerned about.”


* Bruce Campbell, PhD, is a chronic-illness educator whose information-packed non-profit website and online courses (www.CFIDSselfhelp.org) build on his own experience identifying and refining the strategies that helped him return to better health after debilitation with ME/CFS.

Note that this material is posted for information and educational purposes only and is not intended to substitute for the attention and advice of your professional healthcare team.

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