Killing
Me Softly : FM/CFS & Suicide
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By Lisa Lorden Myers
Editor’s Note:
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. This article was originally
published in Fibromyalgia Frontiers, the journal of the National
Fibromyalgia Partnership.
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, 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, 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.
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Warning Signs of Suicide
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Talking or joking about suicide or statements about being
reunited with a deceased loved one
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Making statements about hopelessness, helplessness, or
worthlessness ("Life is useless" or "Everyone would be
better off without me.”)
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Preoccupation with death (recurrent death themes in music,
literature, or drawings)
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Appearing suddenly happier or calmer
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Loss of interest in things one cares about
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Unusual visiting or calling people one cares about
(saying good-byes)
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Giving possessions away, making arrangements, or settling one's
affairs
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Self-destructive or risk-taking behavior (alcohol/drug abuse,
reckless driving, self-injury or mutilation).
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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.
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