Fibromyalgia and the highly empathetic/ highly sensitive person

” Highly sensitive people are too often perceived as weaklings or damaged goods”, Anthon St. Marten

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, general society that is dysfunctional and often lacking in empathy.

In the issue I received recently there is an article published 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, “Cormorbid 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 pychobiological 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 crosssectional study”, BMC Family Practice.

Kayhan et al., 2016, “Sexual dysfuntion, 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 have 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 over stimulated 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 as 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?


7 thoughts on “Fibromyalgia and the highly empathetic/ highly sensitive person

  1. Mary C

    Hello Barbara Keddy,

    Thank you for your posts. I am grateful to have a place to read people’s experiences similar to mine to help me further investigate my health issues.

    Today, I am dismayed by the article I read in the LA TIMES. Apparently, Netflix is airing a new documentary Series called “Afflicted”. Series promotes the idea that CFS, and other similar, difficult to diagnose illnesses, chronic illnesses are psychosomatic. Article indicates a group of activists, writers, filmmakers and Physicians and Scientists have written an open letter to Netflix to take down the show. I will write to Netflix as well and urge you, and/or anyone reading this to do this same.

  2. Bett Willett

    Someone should teach them the difference between psychosomatic diseases and disease caused by the repeated stress of living with constant alertness that childhood trauma abuse or neglect causes. My fibro was caused by my childhood neglect, as perhaps was my ra, however they are not psychosomatic to any degree.

  3. Barbara Keddy Post author

    Oh Bett: I agree with you completely!!!I just watched two episodes and have so many mixed emotions about the ways in which the people are portrayed. I, like you, believe that these conditions are caused by childhood trauma and then repeated episodes or a huge one, like a car accident, completely- almost- (figuratively speaking) paralyzes the central nervous system.
    Using words like psychosomatic or hypochondriac doesn’t help us in the least. Then we are portrayed as hysterics. I hope as I watch more episodes that there will be some hint of therapy that is not off beat, or involving blood and so many ‘pills’of a dubious nature and has a counselor of sorts that can help the person come to understand the source of the trauma.
    This is very distressing…

  4. Seamus

    I have suffered form FM for about 6 years now, I’m 44 and I have read your page. I agree with your assessment. This may sound strange to some people, but I have the same thoughts on this horrible suffering (I’m not calling it disease as I don’t believe it is). I have always been empathic, to the point where I cant almost read people.
    I’m extremely sensitive to emotions and how things affect other people and not myself. What your saying in the page, about FM suffers are feeling other peoples pain is on the right track. Maybe it goes even deeper than that? I thought about the world in general as in the Earth, are we actually feeling pain because of our sensitivity some kind on geometric disturbance? (Empathy) we feel more than others so is it plausible?
    Having said that, I suffered a serious leg break resulting in Compartment Syndrome (CS) , I was very close to losing my leg or dying. I was in so much pain from break the doctor on the ward called an anesthetist (at this point the doctors didnt know about the CS). He said the amount of morphine you have been given should have been enough, but I will give you and epidural (he also explained that he’d been awake for 36 HOURS!!! So I leaned over and after 3 attempts to get the needle in to my back. I said no more, I would rather suffer the leg than that ever again. He then called the consultant he came and examined again and told me we are rushing you in to surgery, we suspect you have CS.
    I woke up 2 days later, my father was there and the consultant. He said you are one very lucky man! He told me that if they hadn’t caught it within around half an hour of that time, he told me 2 things would have happened A) I would have died of a heart attack!!! B) I would have woken up with just one leg. Necrosis had set in and some of my muscle had been removed.
    The reason I’m so emotional about is had the anesthetist managed to give me that epidural??? Had my mind not told me to tell him to stop, I would be dead. So I was released from hospital just as the second plan hit the twin towers. What I’m missing from this, my mother passed away the year before (Cancer). So when people say FM is linked to trauma, it could be right because that 15 months was pure trauma.
    My FM consultant told me it was probably the above that caused my FM, but all that happened back in 2001, I was diagnosed with FM 6 years ago? So I’m doubting that Trauma is the link.
    Thank you your page, I want to post more about FM and what your saying, there is more to this! some I’m not sharing in public as its kind of spooky/empathic.

  5. Barbara Keddy Post author

    Dear Seamus;
    Oh you have such a classic picture of fibro. Past trauma that does not ever resolve itself. The emotional scars that become part of your memory are so difficult to erase. You story is a sad one and PTSD can be triggered by many things, even by just a somewhat minor event. I link fibro to PTSD in other blogs as I can hardly differentiate the differences. Past trauma, highly sensitive persons, intuitive, overly empathetic…is this you? Put all these things together and a candidate for fibro.
    I wish you best wishes, Regards,

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