Kathy Lewis is a Canadian survivor of sadistic abuse and organized child prostitution and pornography. She is an activist and a member of Survivorship's Publications Team.
FIBROMYALGIA: NOW YOU SEE IT: NOW YOU DON'T
"Pain annihilates not only objects of complex thought and emotion but also the objects of the most elemental acts of perception. It may begin by destroying some intricate and demanding allegiance, but it may end...by destroying one's ability simply to see." Elaine Scarry: THE BODY IN PAIN
Living with a diagnosis of fibromyalgia is like committing oneself to a shell game, wherein a quarter is placed under one of three shells. While deft hands move the shells around, one tries to follow the object and wins only if able to identify where the quarter winds up. Rarely is one able to name exactly which shell the prize is under.
Five years ago my general physician found a high RH Factor from my blood tests. She was sure I had rheumatoid arthritis because I constantly complained of pain throughout my body. I was sent to a rheumatologist who redid the blood test, found no high RH Factor, but said there was a possibility I had fibromyalgia. She poked all the trigger points but there wasn't enough pain to make the diagnosis. She said that maybe I was just having a good day.
She told me to come back in six months; when I did she repeated the poking and I had enough sore spots for her to diagnose fibromyalgia and prescribe the "Three E's": Elavil, Education, and Exercise. I accepted the last two and rejected the first. I'd had enough Elavil during my life to know that it would cause enormous weight gain and leave me tired all the time. I think I took Zoloft instead; I can't really remember. As a survivor of organized, sadistic abuse, I've had so many drugs prescribed to me since the age of thirteen that their names begin to blur after a while.
Now I qualified for this diagnosis of fibromyalgia, a cluster of symptoms that includes deep muscle pain, headache, fatigue, and confusion, sometimes referred to as "fibro-fog." It was a label that fit but gave me no relief since there was little to be done about it medically. Practically, it has worked against me because my insurance company can't get it out of their profit-oriented minds that to get me off long-term disability, they just have to teach me to live with this illness or syndrome or disease
- whatever they are calling it these days. No doctor really knows what to do about it anyway, so it's not as if I can go and get any relief from the pain. The diagnosis is just one of the many labels I've had stuck to me throughout my life. Whatever labels they want to stick on there is only one truth: I suffer pain because of many years of abuse. That is what I know underlies my medical diagnosis of migraine or fibromyalgia.
I've spent years with neurologists trying to get relief from migraine headaches: classical (with an aura, those scintillating lights that block out half the world) and common (those with the pain but no aura). I've gone through every migraine drug on the market with no relief from the pain. I've been accused of being a narcotic seeker more than I care to think about. This is the label they stick on you when you ask, "Please, stop this hammer pounding in my head."
I can only work at anything for about two hours and I am exhausted. My body aches from head to foot. The headaches and the muscle pain and fatigue have been constant and life-altering. I hurt almost all the time somewhere in my body.
I hear and read many stories from people who suffer from crippling complex disorders that have limited their abilities to work and to enjoy life. Like me, some suffer from chronic pain syndromes like fibromyalgia and migraines. Every once in a while I remind those sufferers with similar clusters of symptoms that the pain is possibly due to abuse histories. I suggest they read Bessel Van Der Kolk's excellent article on the relationship between the memories of abuse we hold and the effects they have on our bodies: "The Body Keeps the Score: Approaches to the Psychobiology of Post Traumatic Stress Disorder." In this article Van Der Kolk, one of the leading researchers in trauma and its effects, examines the numerous neurological and chemical changes that the body undergoes during the experience of trauma. It has always made sense to me that that these changes could be responsible for current otherwise inexplicable pain.
Through ten years of excellent psychotherapy with a gifted and dedicated psychologist, I have examined various reasons for pain in different areas of my body, but particularly headaches and the fast-onset fatigue that occurs during the recounting of certain memories. Sometimes abreacting memories has helped the pain and the fatigue, sometimes it hasn't. Nothing has ever consistently made sense - that problem of "seeing" once again arises that makes it so difficult to write anything definitive. This past summer, 1999, my insurance company, which believes I should just be over all this post traumatic problem, insisted I go for "independent"
medical reviews by a psychiatrist and an internist. The internist said there was nothing he could do, that my problems were linked to trauma, and that the insurance company had wasted his time.
The first psychiatrist I was booked with could not tell me that he had any experience dealing with severe trauma survivors, so I insisted on being sent to someone who had experience in this area. I gave my insurance company the name of six psychiatrists across Ontario who I would see. They chose the closest to me in proximity.
I was fortunate to have insisted on this change since the original psychiatrist they had me booked with is known to be heavily connected to and influenced by a well-known member in the Canadian False Memory Syndrome Foundation. I would
advise anyone in a situation with an insurer to always check out the credentials of the doctors who the company chooses and to use your rights as a consumer to ask for an expert in the field. Also, make sure that you take with you a silent witness. Although the insurers will tell you that you can't do that, it is your right, and you must insist that that is the only way you will be able to comply with their demands.
The psychiatrist diagnosed me with Dissociative Identity Disorder, writing that "if my [insurance] worker said to me that I 'should be over it by now,' this worker needs to access the literature on post-traumatic stress disorder to find out how disabling it can be." She continued on to say, "The kind of physical and sexual abuse that occurs with people who have been part of a [sadistic] abuse early on, is really quite horrible and while there really is a hope of healing, there is always the real possibility that the person, for whatever reason, cannot fully heal, and I don't think that is a matter of motivation. It has more to do with the depth and the extent of the trauma from abuse that happens at a very early state of development." She stated that head trauma could be responsible for some of my pain. I'd been subjected to a great deal of "head trauma."
In addition to DID, her diagnosis included PTSD, Major Depression, Panic Disorder, Headaches, Fibromyalgia, preceded by a "?," which also preceded
Esophageal reflux, due to the fact that I occasionally go through medically inexplicable periods of spitting up blood. She wrote that I use should only "self-hypnotherapeutic mechanisms," and not drugs, to control these conditions. I was unhappy with this comment as I have long believed that I have a right to adequate pain management. Her comment seemed to diminish the horror of that pain and oversimplify my situation. If it had been that simple, I would have already mastered these techniques in my ten years of therapy.
I document all of this because, shortly after this, another confusion was added to the mix, that could call into question the fibromyalgia diagnosis and negate the psychiatrist's opinion that my headaches were due solely to psychological factors.
Without going into the details of how this came about, I received a new diagnosis which helped explain why I was having so much pain in my arms, hands and shoulders. Ultra-sound tests showed that the subclavian region, beneath my shoulders, was clotted with blood. Now, a hematologist was involved who told me that the clots would cause swelling and spasms which could account for the pain in those regions. They were caused by a factor in my blood called the "Lupus Anticoagulant," a confusing label since it has nothing to do with Lupus and causes the blood to produce clots, not the opposite, as the name implies. Another term used for the condition is the Anticardiolipin Antibody. For no particular reason, the hematologist tells me, some people just develop this condition, are at risk for strokes and have to be on blood-thinners all their lives.
The rheumatologist, on the other hand, states that my past history of being physically abused and tortured as a child is "very significant." She and a handful of other enlightened doctors believe that these antibodies are produced by trauma or at least that trauma contributes to their presence. About two months after being on blood thinners, my headaches decreased from every day of the month to possibly six days in a month. The pain in my arms, hands and shoulders has not really decreased but now I am told it is due to spasms and scarring in the blood vessels.
So, do I have fibromyalgia? According to the most recent assessment done in April 2000, I do. Is trauma or the memory of it responsible for all my pain, or just some of it? "Migraines are part of the Anticardiolipin Antibody syndrome," states the rheumotologist's report. So there is a concrete connection between pain, trauma and an identifiable medical condition. By "identifiable", I mean that they can do "tests" and see that receive back data that "proves" something is really wrong. If some
of my pain is due to body memory, how much, then, can be treated with psychotherapy, how much by drugs? Is the antibody that threatens to clot my blood part of the immune deficiency disorders that seem to be common to so many survivors when our bodies turn against us and start acting upon the sense of worthlessness and self-hatred that abuse created in us? Do we internalize the hatred our perpetrators held for us that caused the torture in the first place?
I don't understand the situation unless I break things down into their smallest parts and just accept that this is the way it is. Unfortunately, my mind will not work this way, and I want more than just this compartmentalized view of my health that the medical community provides. I want the whole picture, not just tiny pieces of a jigsaw puzzle that seem to come from a number of different boxes and may not ever fit together. Some doctors see clearly the connection between chronic pain syndromes and historical abuse. Others refuse to consider the notion and will dismiss you as crazy if you tell them there is a connection.
Meanwhile, the prestidigitation of medical research goes on, running the gamut of the benefits of surgery on the brain, neck, and spinal cord of fibro sufferers, to insisting that there is no such thing as fibromyalgia and that the pain is not so much "all in our heads" (a phrase which most doctors shy away from now), but that we now suffer from "somatic disorders," making us "difficult" patients to treat.
On the legal front, an injured ferry worker (male) in Seattle, Tracy Greenwood, received a settlement of $2.3 million after the jury concluded that his fibromyalgia was the result of a work-related accident. The lawyer, Steven Krafchick, found this compensation for a "life of pain" to be just. He has successfully argued against insurance companies who claim that sufferers have psychiatric disorders and should not receive disability payments and says that there have "been settlements in fibromyalgia cases for millions of dollars around the nation." He sums up by saying: "These people have miserable lives."
Despite the legal recognition that we lead "miserable lives," medical research continues in its quest for truth about this condition. My personal favorite medical explanation for fibromyalgia is that it is one of several "somatic syndromes" which is "largely an artifact of medical special-ization." (see Wessely S. and Nimnuan, C, "Functional Somatic Syndromes: One or Many" available at the web site http://www.cfs.inform.dk/somatisering/somatizing/lancet.html . What this means is that if you go to a rheumatologist and s/he doesn't know what's wrong with you, you will be diagnosed with fibromyalgia. Coincidentally, the other "somatic syndromes" that are considered artifacts, such as "irritable bowel syndrome, PMS, chronic pelvic pain, hyperventilation syndrome, tension headaches, and temporo-mandibular joint dysfunction," to name a few, are all common among survivors of sexual abuse.
This same study tells us that "almost all functional somatic symptoms [such as those listed above] are more common in women than in men." Two men in the study, as opposed to twenty women, complained about these symptoms. An analysis of this statistic could be dangerous if done by medical professionals who have a medical bag full of jargon for trivializing women's pain, including that we are just plain crazy.
However, another recent study (Walker, E. and Keegan D., et al in "Psychosocial factors in fibromyalgia compared with rheumatoid arthritis: II. Sexual, physical and emotional abuse and neglect," published in Psychosom-Med 1997 Nov-Dec, Vol 59 (6) pp:572-7) found that in comparison with patients who had rheumatoid arthritis, patients with fibromyalgia "had significantly higher lifetime prevalence rates of all forms of victimization, both adult and childhood, as well as combinations of adult
and childhood trauma." This makes far more sense out of the statistic of twenty women to two men complaining of "somatization disorders." Violence against women and children, pervasive and escalating, leaves us with shattering pain.
Whether it is from direct injury, whether it lives in the cells of our bodies as memory or whether it is because of some psychobiological or neurological change that occurs, abuse leaves us with lifetime pain.
It is time that medical professionals understood the political aspects of women's pain. Right now they don't know whether to perform surgery on us or just refer us on to a psychiatrist, who will prescribe anti-depressant medication so that we can "get happy" and forget all those bad things that happened. That does not help one bit to alleviate the pain. Either way, women with seemingly inexplicable pain will continue to be those difficult patients that doctors dread. The problem is that important pieces of our medical history puzzle might well be overlooked.
It is left to survivors to educate medical practitioners that our pain has to be taken seriously. If pain is treated either as factitious, or exclusively as a product of abuse, we are at risk for complications. If I had not gone to the emergency room and gotten an ultra sound test, I could have died from those subclavian blood clots. On the other hand, just because there is no test that can show where some pain originates, that does not mean that doctors should just ignore it.
For ourselves, we need to know when the pain is treatable by a doctor and when it's not. At some point we may have to get off the medical merry-go-round that can often re-victimize survivors if physicians are not aware of the issues and act on that awareness. We need to learn to take care of ourselves: to monitor the amount of time we are able to function and when we need to rest, and to build up a circle of supporters, both personal and professional, to whom we can turn when it becomes just too much to bear alone. Our friends have to know that sometimes we are just not going to be reliable in meeting our obligations to them. I have learned that support can come from the most unexpected people, but one must be always be careful to whom one discloses. It is wise go slowly when disclosing to a relatively
unfamiliar person, particularly one in the medical profession.
Living with the leftover pain from abuse or its memory closes doors for us. It can limit our lives by becoming all of our lives. It can leave us susceptible to alcoholism or drugging or suicide to kill the pain that we cannot convince someone is real. More pain is created when others deny our reality. We often follow suit and claim they must be right and we are just making it up or are seeking attention. We were often taught to do that anyway both when and after the abuse was occurring.
Scarry tells us that when pain is "indisputably real to the sufferer, but denied by others, there is a doubling of pain's annihilating power." Any of the pain that
survivors experience, including fibromyalgia, must be acknowledged, given voice to and respected, both by ourselves and by our supporters. Ultimately, though, we must use our own resources and self-knowledge to be able to monitor it and live with it.
So where does this leave us with this mysterious diagnosis of fibromyalgia? One of the most devastating effects of childhood sexual abuse comes from being told over and over again that what is happening isn't really happening, that what hurts doesn't really hurt. This brainwashing technique, used by abusers to protect themselves and coerce our compliance, destroys our ability to trust our own senses and to learn how to take care of ourselves. I was taught to sublimate both physical and emotional pain. Now, in my late forties, that pain has taken on a personality of its own and has engaged itself in deep rebellion to assert its right to be felt and heard. I intend to hear it, feel it and see it. I also intend to take care of it, as if it were itself a child in need of attention.
However medical research interprets our pain, we owe it the best care we, as adults, can give it. Resisting further exploitation, refusing to be silent, engaging politically in activism to end abuse, including that by the medical profession to deny our reality, saying no to demands of a society that says we must smile and look a certain way no matter how we feel, moving into relationships that are validating and respectful to us, with people who will not give up on us if we say we just can't meet a commitment one day, ridding our lives of the abusers and deniers, supporting those who support us. These are all ways of telling our bodies and mind that they matter.
Finally, after all these years, they matter.
That message we can send to ourselves will not end pain, but it will take us far in believing in our own reality, advocating for ourselves and stating our needs to those who are willing and able to meet them.
ADDENDUM: I am fortunate to now have a pain management doctor who gives me
what I need to handle severe pain. I don't have to go to emergency rooms or beg my family doctor, who tells me she knows nothing of pain management and refuses to prescribe opiates, to get me out of the pain. I have complete control over how much medication I use and when I use it. To all those who have believed me and believed in me, I am grateful. I can now laugh, rarely miss appointments or meetings and don't live in constant fear that I will suddenly be hit with that hammering migraine and have to convince some on-call physician that I really do need narcotics to stop
the pain. But it has been a gruelling and expensive 10 years to find both the psychological support and the medical interventions that have led me to the quality of life I have now. Believing myself and what had happened to me, getting good psychological therapy, getting good pain management and making use of less conventional methods of addressing pain has given me a quality of life that I would not dared even have dreamt about 10 years ago.