Killing Me Softly: FM/CFS & Suicide
By Lisa Lorden Myers
Note: Lisa Lorden Myers, a ME/CFS and 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. This article was originally published in Fibromyalgia Frontiers, the journal of the National Fibromyalgia Partnership. Lisa now runs the website Living with CFS & Fibromyalgia.
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 just last year, 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, about 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 about 1.5% 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. In 2006, Leonard Jason and colleagues published a study analyzing a memorial list maintained by the National CFIDS Foundation.
They reported that suicide was one of the three leading causes of death in the sample, along with heart disease and cancer. The researchers noted several limitations to the study, including uncertainty about whether the list was representative of people with CFS and concluded "clearly, it is not possible to generalize the data from this memorial list to the overall population of patients with CFS."
However, there is evidence that chronic pain and illness put patients at risk for suicide. 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, 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, or (2) 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. 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.
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)
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, Ph.D., 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."
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 helplines 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. Suicide is preventable, and there are a variety of resources that can provide the support you need.
Suicide Awareness Voices of Education (SAVE): www.save.org
Befrienders International: www.befrienders.org
American Association of Suicidology: www.suicidology.org
Suicide: Read This First: www.metanoia.org/suicide
National Hopeline Network: www.hopeline.com
What you can do if you see possible warning signs of suicide...
- 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.
Adapted from information provided by the American Association of Suicidology and Suicide Awareness Voices of Education (SAVE).