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The psychological impact of dependency in adults with chronic fatigue syndrome/myalgic encephalomyelitis: A qualitative exploration

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By A. M. Williams et al.

Abstract

Chronic fatigue syndrome/myalgic encephalomyelitis can limit functional capacity, producing various degrees of disability and psychological distress. Semi-structured interviews explored the experiences of adults with chronic fatigue syndrome/myalgic encephalomyelitis being physically dependent on other people for help in daily life, and whether physical dependency affects their psychological well-being. Thematic analysis generated six themes: loss of independence and self-identity, an invisible illness, anxieties of today and the future, catch-22, internalised anger, and acceptance of the condition. The findings provide insight into the psychological impact of dependency. Implications for intervention include better education relating to chronic fatigue syndrome/myalgic encephalomyelitis for family members, carers, and friends; ways to communicate their needs to others who may not understand chronic fatigue syndrome/myalgic encephalomyelitis; and awareness that acceptance of the condition could improve psychological well-being.

Source: Williams AM, Christopher G, Jenkinson E. The psychological impact of dependency in adults with chronic fatigue syndrome/myalgic encephalomyelitis: A qualitative exploration. J Health Psychol. 2016 Apr 19. pii: 1359105316643376. [Epub ahead of print]

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2 thoughts on “The psychological impact of dependency in adults with chronic fatigue syndrome/myalgic encephalomyelitis: A qualitative exploration”

  1. dfwmom says:

    It sounds very nice, but the truth is that it doesn’t matter how you say it to people, if they are not ready to hear you. In a sense, suggesting that if family and friends are not “getting it” when you tell them you need their help, or explain your limitations, that somehow you are doing it wrong, and need to be “educated” by a psychologist about how to explain yourself and your illness “the right way”, is once again — BLAMING THE PATIENT. Been there, done that.

    I realize psychologists are trying to help, but the history between CFS/ME patients and psychologists is not a good one. CFS/ME patients are still trying to get rid of the “somatoform” (conversion disorder — pick your favorite medical term for “we don’t believe you’re really ill”) stereotyping of their illness, and trying to deal with doctors who keep wanting to dismiss their pain, and chalk it all down to depression and dependency. In fact, there is a very bad history of CFS/ME patients being forced into psychiatric treatment and denied medical care for their illness. Karina Hansen remains incarcerated, and her condition appears to be worsening as we speak.

    What CFS/ME patients need, is not another psychologist making suggestions for how to “cope”. What CFS/ME patients need is for the money and effort to go into FINDING A CURE — not finding a dozen new ways for them to explain to people who don’t want to listen, that they REALLY, TRULY, HAVE A REAL, TRUE ILLNESS.

    In fact, it’s ironic that psychologists, who have worked to hard to get CFS/ME patients treated like they are crazy, are now working to help CFS/ME patients explain to family and friends that they are actually sick.

  2. dfwmom says:

    “…awareness that acceptance of the condition could improve psychological well-being.”

    How condescending can you get?! I think you broke a world record.

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