Fibromyalgia and the highly empathetic/ highly sensitive person
Anton St. Marten writes that to feel intensely is “the trademark of the truly alive and compassionate”. Rather than believing that the person who is highly empathetic and sensitive is weak, it is, in fact, a general society that is dysfunctional and often lacking in empathy.
In the fibromyalgianewstoday.com issue I received recently there is an article published on January 22, 2018, which reads: “Personality Disorders Prevalent Among Fibromyalgia Patients, Study Suggests” by Alice Melão. The articles she cites appear to believe that those of us with fibromyalgia (FM) are: “exhausting to manage”, “perfectionists” and “demanding”.
Furthermore,” Personality disorders, such as obsessive-compulsive, avoidance and histrionic behaviors, are prevalent comorbidities, among patients with diagnosed fibromyalgia”. I was aghast when I read this article and in particular when I read the angry comments from other readers who are hurt by this language. As one commentator wrote: “These articles are not only useless, they are damaging”. Alice Malão cited the ten studies :
Martinez et al., 1995, “Psychological aspects of Brazilian women with fibromyalgia”, Journal of Psychosomatic Research.
Thieme et al., 2004, “Comorbid depression and anxiety in fibromyalgia syndrome: relationship to somatic and psychological variables, “Psychosomatic Medicine.
Rose et al., 2009 “Study on personality and psychiatric disorder in fibromyalgia”, Presse Medicale.
Cerón Muñoz et al,. 2010 “Fibromyalgia and personality disorders”, Semergen-Medicina de Familia.
Uguz et al., 2010 “Axis 1 and Axis 11 psychiatric disorders in patients with fibromyalgia “, General Hospital Psychiatry.
Pando Fernández, 2011, “Fibromyalgia and psychotherapy” Revista Digital de Medicina Psicosomática Psicoterapia.
Garcia-Fontanals et al., 2014 “Cloninger’s psychobiological model of personality and psychological distress in fibromyalgia, International Journal of Rheumatic Diseases
Fu et al., 2015, “Psychiatric and personality disorder survey of patients with fibromyalgia,” Annals of Depression and Anxiety
Gumà-Uriel et al., 2016, “Impact of IPDE_SQ personality disorders on the healthcare and societal costs of fibromyalgia patients: a cross-sectional study”, BMC Family Practice.
Kayhan et al., 2016, “Sexual dysfunction, mood, anxiety, and personality disorders in female patients with fibromyalgia,” Neuropsychiatric Disease Treatment.
It appears from these articles that people/women with fibromyalgia are hysterics, difficult to manage, and obsessive-compulsive. The thousands of readers of my blogs definitely have something in common with one another, but it is not a personality disorder. Our commonality is hyper-empathetic sensitivity in a world gone awry. While I don’t know about but three celebrities who have or had fibromyalgia I cannot attest to these three as having personality disorders.
I don’t know Lady GaGa who has stated she has FM, but I have read extensively about Florence Nightingale and her retirement to seclusion at age 38 after being in the Crimea. Was it PTSD or fibromyalgia she suffered from and aren’t they the same? Was she in fact hysterical when she served during the Crimean War? Was she difficult to ‘manage”? Was she in fact an ‘obsessive-compulsive’ person? My questions are the result of years of living with this condition and self-reflection. Yes, Nightingale wanted to change the world of health care and even the military, both of which she considered mismanaged. Is that obsessive-compulsive? Did she fit this personality disorder pattern? Do I?
As a child, an adult, a responsible mother, wife, and professor I was never considered “difficult to manage”, in fact, the exact opposite. I was generally compliant, easy to get along with, and certainly an obedient child. More to the point I have never been in the least bit obsessive-compulsive, and as for hysterical about everything in life I don’t fit that picture. Additionally, I have never been considered a perfectionist, in fact, (unfortunately for my spouse) the exact opposite again.
So why is it that we are considered people with similar “personality disorders”, a damning label? Is it because we have an invisible dis-ease and therefore our health challenges are considered suspect? Is it because the majority of us are women and highly sensitive? Why is it that the military who have PTSD (fibromyalgia) have a different name for the same symptoms? We all have great concern for the veterans who suffer from shell shock/ Gulf War Syndrome/ battle fatigue/ PTSD (all can be compressed into the label of fibromyalgia) and we acknowledge there are degrees, as there are with those not in the military who also has FM/PTSD.
I prefer instead to turn this around, turn it onto its head and use a different language. As stated on many occasions, fibromyalgia occurs in highly sensitive persons (HSPs as Elaine Aron has defined the concept in her original book The Highly Sensitive Person). Whether or not this is nature or nurture is debatable, but nonetheless, the child who is highly sensitive feels things very deeply and as an adult, this trait exemplifies a certain type which is not a disorder, but rather as Aron states, is a gift, like the canary in a coal mine.
We DO have a hyperactive mind, a frequently overstimulated central nervous system, with a highly-empathetic nature. We do feel the pain of others too deeply. The question though is to ask these researchers if we have a disorder or rather, an intense desire to help others to the detriment of ourselves? Consider this: why do so many nurses and social workers have fibromyalgia? Why are so many military personnel suffering from PTSD?
We see, hear and anticipate the pain of others in these overly sensitive minds of ours to the extent that anxiety becomes second nature, particularly since we had not developed a hard shell in our earlier years. We are highly intuitive, much more than the general public. Is this a disorder that is perceived as deplorable? Is it not a gift? Why does it continue to have a psychiatric label that is shameful?
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