Topic: Medical Care
How Abuse Trauma and Personality Type Theories Play Out in the Fibromyalgia and CFS Online Support Groups and Message Boards
Considering fibromyalgia patients are very strongly encouraged by the medical and psychosocial support communities to join fibromyalgia support groups and forums and to network, bond with and commiserate with fellow fibromyalgics, where does peer pressure and peer acceptance fit into the equation?
From “Treating Fibromyalgia” by Paul J. Millea, M.D., M.S., and Richard L. Holloway, PH.D; from American Family Physician:
Support Groups and Online Chat Rooms. Many patients benefit from discussing their day-to-day lives with others who are also affected by fibromyalgia. Support groups may be located through a local chapter of the Arthritis Foundation (AF). The AF address is 1330 W. Peachtree St., Atlanta, GA 30309. Information on local chapters can be found on the AF Web site at http://www.arthritis.org.
http://www.aafp.org/afp/20001001/1575.html
From the “Fibromyalgia Resource Information” website answering the question of why Fibromyalgia patients may need therapy:
Fibromyalgia patients may need added emotional support and help with coming to terms with living with the chronic pain and physical and mental limitations associated with this disease. Counseling sessions with a trained professional may help improve communication and understanding about the illness and help to build healthier relationships within the patient's family. Becoming actively involved in a support group can help those with fibromyalgia ease feelings of isolation and low self-esteem.
http://www.fibrofactpage.com/questionsii16.html
The link between Fibromyalgia/CFS and Post Traumatic Stress Disorder through emotional trauma from domestic violence victimization, or by supposedly 'freaking out' from being in a car accident, only garners a mention in just some of the Fibromyalgia/CFS books which are written for patients and their families. The concept of Fibromyalgia and CFS being somatoform/biopsychosocial illnesses caused by parents and other family caregivers neglecting, beating and/or molesting their children, which leads to fibromyalgia in adulthood for these child abuse victims, is much more commonly found and is discussed in far greater detail within the written literature which is geared towards physicians, psychologists, social workers, and others in the medical and social services support fields; although these subjects occasionally become minor news in the media for a very short time the findings from a new psychosocial new research study are released. But the somatoform theories of Fibromyalgia being caused by the emotional aspects of domestic abuse and/or accident trauma have definitely made it to the internet-based formal and informal Fibromyalgia support and advocacy groups and organizations, as well as to various patient online support groups, forums, message boards, and illness/awareness blogs for dissemination to the patient community as a whole. Discussions of studies linking fibromyalgia to certain mental illnesses appear in these forums, on occasion.
Oddly enough, some Fibromyalgia patients from the cyber-based fibromyalgia advocacy websites and online patient support groups and blogging community seem to readily embrace the abuse-trauma connection without question, and these fibromyalgia patients also very willingly embrace the Type A Overachiever-People Pleaser Fibromyalgic Personality label and the Fibromyalgia/Mental Illness co-conditions labels. Obviously everyone who has been diagnosed with fibromyalgia isn't an abuse victim, doesn't have PTSD, nor are they all Type A overachievers and people-pleasers with low self esteem issues, nor do they all have mental illnesses, such as Bipolar Disorder. So what is going on here? Abuse and neglect victims develop a wide variety of medical conditions, illnesses and diseases like everyone else, so naturally some of them will be labeled with fibromyalgia and CFS; and in all likelihood there are significant socioeconomic reasons behind this. Does everyone in the fibromyalgia patient support community who vocally goes along with the abuse-trauma and mental illness premises really have these problems?
The Dangers of “Me Too!” Syndrome
Any chronic illness patient pool will include members who are less knowledgeable, not as well educated, easily impressionable and easily persuadable, who will go along with something just to go along and to fit in with their peers; or they are so desperate for answers if not an outright cure they become all too willing to buy into any theory that comes along that attempts to explain the cause of their illness. Some of these desperate, impressionable patients who buy into the childhood abuse theories may start to go looking for so-called “proof” that fit into this premise by exaggerating or even inventing trouble that isn't really there. If an impressionable patient spends time socializing with fellow support group members who all talk about their childhood abuse problems and blame the abuse for causing their fibromyalgia or CFS, what's to say the impressionable patient won't begin to develop a distorted view regarding her/his upbringing and seek out childhood based “problems” in order to fit into the mold and fit in with her peers? Examples: Suddenly her parents' rules regarding childhood curfews, not being allowed to watch television on school nights until all homework was finished, and rules on teenage dating, wearing make-up, etc. which were a bit stricter than the rules imposed by the parents of some of her childhood friends could suddenly be misread and misinterpreted into indicating that her parents emotionally “abused” her while she was growing up. Or the emotional “abuse” could be: As a teenager she was forbidden to date a boy she had a serious crush on who had several runs-ins with law and was frequently truant from school.
Unfortunately the same “Me too!” philosophy holds true when links between fibromyalgia and particular mental illnesses are brought up for discussion as well.
From the abstract for “Are support groups beneficial for fibromyalgia patients? The negative effects of social comparison for those who want it most”:
Peer support plays an important role in coping with many chronic health problems. Peer support may, however, contain a risk. Research has indicated that people with high social comparison orientation (SCO) are, on the one hand, more interested in contact with peers, but may, on the other hand, be negatively affected when they are confronted with peers who are worse-off....The results supported our hypothesis. Despite the many beneficial effects of peer support, the present study showed that as fibromyalgia patients have a higher need to compare themselves with others, they are more negatively affected by social comparison with peers who are worse-off, because they tend to identify themselves with worse-off others. http://dspace.ou.nl/handle/1820/1206
In a discussion thread, on the 'connection' between fibromyalgia and child abuse trauma (at www.mdjunction.com's fibromyalgia forum), one poster wrote:
"I have heard the same thing and I was diagnosed with fibro and also had an abusive childhood. I have heard others with fibro say they had suffered some trauma also. The percentage is really high, like 80 to 90% or something. I really believe when people abuse children they ruin lives"
http://www.mdjunction.com/forums/fibromyalgia-discussions/general-support/59274-fibromyalgia-and-childhood-abuse
When rumors such as this fly around the online and real world fibromyalgia communities- misconceptions like this poster's false belief that as many as 80% to 90% of those diagnosed with a particular chronic physical medical condition, in this case Fibromyalgia, were child abuse victims and the abuse caused them to develop this medical condition as adults- what sort of social, psychological and medical repercussions are there for this? For every fibromyalgia patient who posted to this thread essentially saying "Me too!" to being abused as a child, how many hundreds, if not thousands of other patients are out there who would have written "Not me!" to a history of childhood abuse, or "I doubt it's true that most FM patients were childhood abuse victims" or "That's not an accurate figure at all, it's not 80% to 90%" if they were posting to that discussion thread? But they didn't post to this thread and apparently they aren't really posting to enough of the child-abuse-causes-fibromyalgia threads in the other fibromyalgia patient forums, groups, and message boards either, so their divergent voices certainly aren't heard as often as they should be.
When it comes to the issue of Type A personailty being a caustive factor of Fibromyalgia and CFS, this discussion page features more "Me too!" responses than responses in which posters don't buy into this cause-effect theory.
"The Type-A Personality in Fibromyalgia & Chronic Fatigue Syndrome":
http://chronicfatigue.about.com/b/2008/02/26/the-type-a-personality-in-fibromyalgia-chronic-fatigue-syndrome.htm
The same holds true with links made between Fibromyalgia and Bipolar Disorder. This blog entry, on Bipolar Fibromyalgia discusses a study which links the two conditions, and is followed by responses from Fibromyalgia patients. While one patient dismisses the theory outright, pointing out that the two conditions have very different symptoms; the other respondants jump on the "Me too!" bandwagon. Some have informally diagnosed themselves with Bipolar Disorder and state they feel the link made between the two illnesses is valid:
"Bipolar Fibromyalgia" from the Bipolarity website:
- http://bipolarity1.blogspot.com/2007/10/bipolar-fibromyalgia.html
- If you have this illness, you must be an abuse-trauma victim too, just like the rest of us. Or, if you have this illness, your brain is malfunctioning and you have bipolar fibromyalgia which explains your aches and pains, your short attention span, and why you rack up credit card debt... This "Me too!" philosophy can be a very damaging mindset for patients to adopt.
- Of course, not every patient buys into the various theories which come down the pike that link Fibromyalgia and CFS with psychological problems:
- “Did You Know You Have a Functional Somatic Syndrome?”:
- http://chronicfatigue.about.com/b/2008/05/15/did-you-know-you-have-a-functional-somatic-syndrome.htm
