Whole Patient Care
Evening everybody, those have been some sparkling presentations this morning. I congratulate Dr. Seckin on those pictures, great pictures. I don’t believe they were taken with an iPhone.
I do not have slides and also I have no high science today. My concern is somewhat different. My concern is in speaking with you today about the emotional life of the women who suffer from endometriosis. I do work very closely with Dr. Seckin, who aside from being a quite brilliant surgeon understands something else – that this is a very complex and multi-factorial disease. I assess endometriosis patients prior to surgery. Then I recommend a treatment plan pertaining to their needs. It is not unusual for an endometriosis patient to make contact with me after the surgery in order to continue the discussions that we have begun for they may not, after the surgery is over, have any other opportunity to do so in the scope of their ongoing lives.
The psychological profile that I develop informs all aspects of the approaches taken to the surgery and as well the recovery period. Every patient I see receives her own treatment plan. It only makes sense. Chronic distress, pain, dysfunction in the abdominal and reproductive regions of a woman’s body, often beginning in early adolescence and continuing unabated for what at times is decades, can elicit the most profound of reactions. My reports are distributed to the collaborating physicians on each patient; the pain doctor, the specialists who will share the operating room for any specific set of symptoms, and so on. I was very tickled to speak with Dr. Regard and found out that some of my reports have made their way to her as well.
There are many psychological factors that any clinician who works with such individuals can usefully understand. When I say clinician I mean a surgeon, palliative care doctors, physical therapists, pharmacologists, psychologists or social workers, reproductive endocrinologists and so on. These clinicians labor under a striking paucity, a lack of knowledge. At times I think the reason why endometriosis is so overlooked is because no one is quite clear as to whether the remarkable lack of engagement with it, in so many puzzling ways, is a medical problem, an ethical problem, a legal problem, feminist problem and so it too easily becomes someone else’s problem. In what follows I am going to roughly group factors for the sake of discussion within eight categories, although of course these are man-made and not naturally occurring categories. So bear with me – here we go.
First, I would like to speak to you a little bit about trauma. Trauma arises from internal and/or external sources. I rarely see an endometriosis patient who is not traumatized. Disruptions of mental functioning are caused by perceptions, inferences or other kinds of information not characterized by an overwhelming influx of stimuli but instead by devastating realizations and implications. In other words, trauma results both from external and internal sources. The cause of the disruption is not essential to the definition of trauma. What is essential is the magnitude of the disruption. A person reaches a critical threshold and then passes into the realm of traumatization. Although it is not perceptible to the outside observer, the individual, the patient, knows when this happens. It is very important for the clinician to know as well. When you follow an endometriosis patient over time you see a dramatic shift when she passes into a traumatized place.
Each patient has their own different threshold, and that is very important to keep in mind, after which they pass into trauma. Every woman with endometriosis has signs that differ and, therefore unique set of meanings to their symptoms. This cannot be emphasized strongly enough. The clinician cannot make the mistake of assuming that since he or she recognizes the symptoms that they therefore understand the meanings of the symptoms. The meanings assigned by patients are rooted in the pre-endometrial personality as well as very idiosyncratic psychological responses to the onset of stabilization of those symptoms. Unless the clinician recognizes, understands and works with the meanings, rather than the facts, of the symptoms, the patient will inevitably feel estranged, alone, isolated and feel as if they are treated like an object rather than a truly dimensionalized individual. Trauma is characterized by timelessness, unbearable repetition that feels as if it happens to, rather than by, a person. A sense of futility and helplessness and defies any inclination to represent itself, to alter itself or to disappear. Endometriosis patients live inside a time machine in their head. They cannot escape into the present. Trauma blurs the difference between the past and the present. Endometriosis can feel permanent, timeless, as if it cannot be undone no matter what the actual medical status. Even when it is not there it is still there.
This is complicated by the way it before menopause can be on what feels like a cycle of eternal return. There are no metrics that the endometriosis patient has that are reliable to detect the return after surgery. Hypervigilance to distress signals from the abdominal area is the only bulwark of defense against this unbearable anxiety. This automatic mobilization of defense guarantees the permanence of the traumatic state rather than reducing it or eliminating it.
Secondly, the dread of never being, and/or, feeling normal. Imagine what it would be like to live in a world without a metric for what is normal. Marriage, children, sexual pleasure, a pain free body and/or a career are all part of an expectable life trajectory. Then consider what it feels like to believe that no one will ever love you. One such patient whose engagement to be married ended explained herself as damaged goods. Many withdraw from dating because of the anticipation of humiliation. Repeatedly I have heard of the simple aspiration to just feel normal, to not imagine oneself an outlier in life in every conceivable way. But endometriosis obliterates the sanctuary of normality.
Even after surgery there is absolutely no way in which a young woman, barring hysterectomy, can know if they are immune from the return of the symptoms at any moment. She scans her body for signs. She interprets every proprioceptive signal as possible evidence that the disease is back. What can she use to discern if she is safe or not? Abdominal pain, heavy menstrual bleeding, excessive fatigue, cognitive dulling, all are frighteningly non-specific. She will just wait until her next cycle and wait and wait. The heavy knowledge, the unspoken Sword of Damocles perched above her head is that she can know that it is back but she cannot know that she is safe. In other words, this disease promotes the belief that she is not normal and does not allow her the respite from the pressure, the conviction that she can have a normal and expectable life like the one she has been brought up to want and to believe in, whatever the particularities of it are.
Thirdly, I am going to speak to you a little bit about guilt, a topic I am sure nobody has any familiarity with! Guilt is the belief one harbors that they have done something wrong and deserve to be punished. Guilt is often unconscious. And unconscious guilt is often one of the driving forces motivating a person, any persons - conscious behaviour. Note that guilt is a belief and it is not an actual transgression. Please do not make the mistake of thinking that guilt, as in a court of law, requites untoward behaviour. Guiltiness originates in the sandboxes of childhood. The crimes, the sins demanding expiation and punishment have their roots in very simple and fundamental facts of life, such as overshadowing a father, hating a sibling, possessing a mother, or thinking on intolerable thought. Unconscious guilt recruits an infinite number of plights in order to accomplish its aim, which is to punish oneself so as to atone for breaches in an ever evolving ethical universe where the punishable and the un-punishable are constituted by a school of one that is by oneself. For the endometriosis patient, punishment is inevitably present and the punishment is often in search of an idea. The most seemingly trite and irrelevant memories of days gone by are lit up by the mind’s pursuit of some kind of an ideational precipitant. It is akin to the French legal system; the accused is guilty until proven innocent, but with the proof of innocence unobtainable.
One patient who I saw was seemingly inexplicably relieved when she woke up from her anesthesia and was told that endometriosis had been found. Had been found, not had not been found. She cared nothing about the post-op pain. What she sought instead was some relief, some surcease from the guilt of believing what she had been told – that her pain was factitious, that it was all in her head. Now, finally, after years and years, she could face her mother.
Next, I want to speak to you about anxiety. The vast majority of women who have endometriosis have at one time or another been diagnosed and medicated for anxiety and/or depression. Anxiety is a basic physiological reaction to impending danger. It is a signal that we send to ourselves, “It’s time to get the blood flowing, the heart beating, to mobilize ourselves against whatever is threatening”. Over the course of evolution genes overshot their mark, as they are wont to do, and began mobilizing us against imaginary dangers. This was the origin of now what is called anxiety disorders. But the pre-surgical endometriosis patient rarely defeats the dangers in her way. This leads to a set of reactions resembling, and usually treated, as anxiety. But it is subtly different.
Unlike anxiety disorders it is not cyclical and it does not follow a pre-ordained course. Unlike anxiety disorders it can be muted but not successfully treated by either anxiolytics or benzodiazepines. The best treatment for the anxiety of endometriosis is the provision of knowledge. Dr. Seckin spoke to this earlier, although briefly. Freely given, and honest about all implications, allowing the patient to mobilize their tool-kit of resources and rally as best as they can within the reality constraints that they face, we promote anxiety tolerance as much as we treat anxiety. Through our efforts we help the anxious person to learn that the unbearable can, in fact, be borne.
The next category that I am going to talk to you about I am going to call the “collapse of conscious conflict” – the “collapse of conscious conflict”. It sounds a little bit hard to wrap your mind around, but bear with me for a moment. Ambivalence is a fact of life. It is a cartoonish relationship that is free of ambivalence, that is, the simultaneous existence of both positive and negative feelings that exist in the same time and in all relationships. But endometriosis can be like a black hole in space, sucking in everything around it. Everything else but endometriosis can disappear; an upset stomach, a cold, a little constipation means endometriosis is accelerating. A shrug from a partner means they cannot live with the reality of the endometriosis. The world is narrowed into preselected categories grounded in symbolic illness. Choices to be made are black and white and they are neutered of complexity and color. The patient who is a dancer is offered a choice principal role in Gisela. This cannot be celebrated. The only question is “on what day of her cycle will she have to dance that role if she accepts the challenge”? The woman with endometriosis relates to her calendar in much the same way as the patient with type 1 diabetes relates to their insulin level – constantly checking it.
The next category is what I am going to call “dangers of counter transference”. I am going to keep this short. Counter transference is a clinician’s response to his or her patient above and beyond that which is appropriate and salubrious. It is ubiquitous and cannot be avoided. It is the clinician’s transference to the patient. Do you want to save a woman? Do you want to prove that you love your mother? Any aspirations to having a fantasy child? Are you hoping to undo some of your painful memories of your own adolescence? These are the types of unconscious fantasized motives that can distract a clinician. He or she can become over-involved, under-involved; insensitive to what the patient is saying. There can be an awesome significance attached to an endometriosis patient that is best understood and not acted upon. It is not sexual boundaries at issue here but emotional boundaries that can be broken and must be respected. I told you I would keep this short and that is the end of that.
The next category I am calling “spouses and partners”. It is important to keep in mind that the endometriosis patient lives in a social context. She has parents, brothers and sisters, lovers, all are impacted by this disease. All must ask themselves the same question. “How can I, and how will I love this person”? Most parents already know the answer and I have seen them rally to the cause of their children ready to sacrifice everything immediately. For spouses and partners the key questions here are much more complicated but only in part because we live in an age where partners are all too frequently seen as interchangeable and replaceable if they have flaws. The real reason though is because of the often primal reactions the endometrial woman evokes in the people closest to her, including clinicians who treat. By primal I do not mean bad. One patient recently commented to me that her only hope in life, the only hope she had was to find a man who needed to be a savior.
The woman with endometriosis is prone to feel guilty with respect to the significant people in her life, the same constellation, parents and lovers. She can say with utter certainty that she has brought this disease onto herself. She cannot have pain free sex, she has failed her lover and this is crushing, absolutely crushing. I have seen several times where a patient has broken off a relationship by precipitating an explosion of anger; usually going both ways, unconsciously, lovingly, unconsciously, lovingly concocting this struggle in order to protect her lover from having to punish her for her own guilty sins, as well as a wish to suffer at her hands. She also believes she has failed her parents who now will no longer, will ever be grandparents. I am going to stop there that is spouses and partners.
I am going to spend a little bit of time now talking about something that I think that we have all heard about but I do not think it has been adequately codified, and that is rage at doctors and rage at authorities. Transference is the repetition of the dynamics of a past relationship into the present. That is a loose definition. If you come into one of my lectures you hear how wrong it is. Any person’s relationship to authority is quite complicated. A clinical psychoanalyst learns to be extraordinarily tuned in to transferences of authority and to interpret that for their patients’ benefit in search of a kind of a beneficial autonomy.
Many individuals are either born into or have obtained authority in contrast learned to or are taught to exploit these transference relationships. Those without public signs of authority can lead a life characterized by over conventionality deferring on any decisions unless they are validated by an authority. At times, without an authority an individual can feel lost. Some individuals collect authorities. The endometriosis patient in contrast is often betrayed by authorities. The idea of such a betrayal is devastating, shattering, jet propelling a woman into a terrifying void where the concept of trust, the foundation for all meaningful interaction, is endangered. Such a woman locates cynicism in what is actually its most obvious, although easiest to overlook guise, and that is the glib reassurance of the authority that all is, and will be, well. She will not, and cannot wear rose colored glasses. Hollow reassurance gives rise to the rage of helplessness. Her voice of despair cannot be stilled.
Yet, this is often what she is fed when endometriosis is not diagnosed. What she hears is this, “Go away, come back when you have symptoms that I can understand”. Several women have spoken to me of how this disease has overturned the assumption of a just God that they were brought up to believe in. Others, improperly diagnosed for many years, medicated for fictitious diseases, told by healers they yearned to have faith in, that they will be fine in a day, a week, a month, that their symptoms are all in their minds. Having undergone surgery or other procedures with obsolescent techniques have lost their confidence in medicine. We all experience rage in different shapes and forms around the issue of abandonment but a woman with endometriosis can, and will, feel this in spades. The authority who is closest at hand, who is doubtless trying his or her best, swims into focus as the most likely target.
The next category, and this is my last one, is what I am calling “pseudo hysteria as a diagnostic disaster”. If I had to hazard a guess I would estimate that one third to one half of all individuals at the turn of the century asylums, either voluntarily or involuntarily consigned, would now be understood to have primary hypothyroidism. In a similar fashion I would estimate that the same proportion of women, perhaps even a larger percentage, at that time diagnosed as hysterics would today be understood as having endometriosis.
For at least 2,000 years of European history until the late 19th century hysteria referred to a medical condition thought to be particular to women and caused by disturbances of the uterus. The ancient Greeks believed that the emotional excesses of hysteria were caused by the movement of a woman’s uterus to various locations within her body as it became light and dry due to a lack of bodily fluids. Pregnancy to cure such symptoms, ostensibly because sexual intercourse will “moisten” the womb and facilitate blood circulation within the body persisted in European medicine for centuries. To this very day the myth lives on that pregnancy is a natural cure for endometriosis. I have been told that several times.
In the mid to late 19th century hysteria was treated by massage of the patient’s genitalia by vibrators or water sprays to cause orgasm. Just recently a pregnant patient cited these as a reason to allow a pregnancy to go forward. Any vestige of endometriosis as a sexual disorder should quickly be put to rest. We must be very careful who, how and what we pathologize.
I am going to now conclude and I know that by now everybody is waiting for what looks like a wonderful lunch.
As may be apparent at this time I am a psychologist. There is a big surprise. But also I happen to be a card carrying psychoanalyst and one who strongly believes that our modern days require a complete grasp of the traditions passed on by my forefathers. But to be clear, I do not speak here today as a clinician recommending how to understand a therapy patient. When it comes to endometriosis I have exported what I know from my consulting office to the medical/surgical office. I see myself as a participant in an interdisciplinary collaboration. And I may be so bold; I have been accused of that in the past, as to suggest that it is the best model of high quality endometriosis patient care. I have witnessed the results and now that I am a part of it, I cannot imagine any other way. But beyond such propaganda, and I would add that I do not view myself as even a minimally competent clairvoyant, I would strongly emphasize that such collaboration is essential for the proper care for this terrible, pernicious disease that strikes so cruelly at the heart of a woman’s life.
I thank you.
Moderator: Dr. Wilson, thank you, we are going to open the floor up for a few questions, so if you could stay by the mic please.
First Audience Member: Thank you so much Dr. Wilson for speaking. While you were talking I have been having chills and tears in my eyes. You have basically described a lot of what I have been through and it took me a very long time to realize every other woman with endometriosis. You spoke about authority and authority betraying us as patients, telling us there is not much we could do or “here, just take pain killers for your pain because it’s psychological or traumatic, whatever…” I was wondering how would you recommend us really trying to speak to the nurses or doctors and kind of really explaining it to them? I remember being…after my surgery and them telling me, “Oh, you have endometriosis everywhere, it’s spread all over. It’s really, really bad and you are in stage four” and I lay there saying “Thank God I’m not crazy”. But still, enough people do not know about this and they do not really understand the severity of a lot of the symptoms and I still find myself having to explain to each doctor, gynecologists as well, or each nurse that I am not crazy. I was just wondering how you recommend a patient to – when they are in the ER bent over in pain – how to deal with that.
Dr. Wilson: I do not have an answer to that. I would rather, if it is okay with you, I would rather have the mic be passed to others who have had similar experiences. I think the answer will come out in the dialogue.
Moderator: We are going to take one more because we are running behind and then we are going to turn it over to our guest speaker.
Second Audience Member: I am one of those people who got discounted and dismissed for many years. It is finding the right person to hear your voice, so do not stop until you have found the right person to take care of you.
Whole Patient Care