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Founders: Padma Lakshmi, Tamer Seckin, MD
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Nurse Conference 2013 - Arnold Wilson, PhD

Nurse Conference 2013 - Arnold Wilson, PhD

Nurses Conference 2013 - Arnold Wilson, PhD

Good morning my friends, colleagues, Dr. Seckin and welcome to the nurses here today. I hope that you all will be happy to join our little community of healers who try to help our ladies who have endometriosis. We embrace you, warmly welcome you but I have to warn you that once you see and understand what goes on with endometriosis your career may take a new direction. The things that you will see will alarm you, will scare you and, at the same time will probably compel you to want to join up and see what you too can do.

Last year I spoke here about some of the characteristics of what goes on in the minds of women who have endometriosis before they have surgery. For those of you who are enterprising enough I think a lot of last year's conference is on YouTube so if you have children who are technologically sophisticated you can get them to hook you up to YouTube and you can see all that happened last year.

I do not like to repeat myself so this year I am going to tackle something entirely different. Rather than talk about what happens before surgery I now want to talk about what happens after surgery. And I want to be also very clear that I will be speaking about matters that will be frankly psychological. So it is going to be a very different and hopefully complementary kind of presentation to those of Dr. Regard and also Dr. Seckin to come.

When one has an appendix taken out chances are that within a week or two the patient will get better. When one has hypothyroidism the addition of Synthroid will usually lead the patient also to get better. However, with some diseases getting better is a bit more equivocal. In cardiac disease a recovery of 60 to 80 percent of pre-morbid functioning is considered a success. In psychiatry, a full recovery of less than 60 percent to 80 percent is a failure but we are getting in that ballpark of around 50, 60 and 70 percent. With respect to endometriosis it is impossible to calculate equations like that. But at the same time it is of the utmost necessity that we define reasonable expectations of recovery.

My talk tonight is about observations on recovery, observations on getting better in endometriosis. It is not only because it is important that a patient should know her odds of recovery but also because the clinical factors involved can weigh so heavily on what it means to recover in the first place. We fight this disease just as hard as we can but nevertheless a cloud hangs over the recovering woman. It is impossible to have complete confidence that she is cured. It is the nature of endometriosis to be unpredictable and to move with stealth and trickery. Even a hysterectomy is no guarantee that recovery is imminent. Now, all this is old news. It is the tip of the iceberg. Since endometriosis is so profoundly tied in with multiple psychological factors we need to investigate what all this means to the patient as she strives to recover.

The first heading that I would then organize my talk under is "Recovering from a Disease Like No Other". Endometriosis is like no other disease. Living with it is like living with no other disease. Recovering from it is like recovering from no other disease. The woman with endometriosis does not have traumatic stress disorder although that category will often be mistakenly applied to her by those who do not understand the nature of endometriosis. She is unlike the person who survives cancer. Certainly there are commonalities of experience between all of these disease entities. But we must be very careful not to look at other medical and psychiatric categories to make sense out of our women patients. It took me a long time to realize now having spoken in depth to so many women that to normalize endometriosis in this way is a grave mistake.

There is a behavioural psychologist most of you have heard of, his name is B.F. Skinner and I am a psychoanalyst by training and he is in a different camp. He is one of those guys who runs rats and periodically people like he and I speak. But actually I find him very interesting. He noticed that a long time ago the best way to make an animal frantic is to apply what he calls a variable interval schedule of negative reinforcements or punishment, a variable interval schedule. In other words, there is no regularity to the administration of the punishment. There is no predictability to when the punishment will take place. There is no sense of how elongated the punishment will be. He might as well have been talking about endometriosis. The variable and unpredictable nature of the punishment, which is the endometrial pain, makes endometriosis the almost perfect torture chamber.

From the observations of individuals like him we can learn that endometriosis cannot be predicted and there is no strategy that one can use to anticipate the symptoms, prevent them, control their frequency. There is no way to know if, how and when they will end. This is a recipe for despair even when the individual is not in pain. It turns out actually that the animals he uses, which are rats, when they can anticipate the pain, anticipate the end of it, learn how to relax between the negative reinforcements. Our women cannot do that. The claim here, to be clear, is not that endometriosis hurts more than other diseases like cancer, rather in its relentlessness and its unpredictability it just cuts differently. It inflicts a different kind of hurt that requires a different and specific reaction from those of us who are in the business of helping them.

Is it not the case then that we are much better at treating physical pain than this kind of emotional tragic knot. This is why so many women with endometriosis withdraw and have little to say, even to their intimates. Once begun emotional withdrawal can take on a life of its own. Family members and lovers can fuss and fuss about the periodic physical pain of endometriosis while the emotional devastation remains untouched, unknown and even at times downplayed by the woman herself.

Does the cancer patient truly deep down believe that he or she is to blame for having contracted cancer? On the basis of my observations I can tell you that there are few things as devastating to a woman with endometriosis that to say or to even imply implicitly that she is to blame for what has happened to her. Yet we see this all the time. A variant of this is the implication that all she needs to do is use her willpower to get out of bed and get going. These are psychological thermonuclear warheads that are every bit as devastating as the physical pain. After all, there are a few good days every cycle and why "can't she just take advantage of them"?

Many women with longstanding endometriosis will tell you that they prefer the agony of the worst physical pain to the torture of these psychological attributions. Endometriosis is not only the perfect torture chamber but it is also the perfect platform for fuelling what we call projection. Projection is all about putting unwanted or negative thoughts and feelings into the minds of others and then responding to them as if they are not one's own. The bell ringer of projection is absolute confidence that she knows what another person is feeling or thinking. Chances are that the more confident a person is that they indisputably know what others think and feel, particularly of them, the less likely it will be the case. Projection is called a defense and it is a defense most often used by the recovering endometriosis patient. Therefore, it is the one that is most necessary to interpret in order to help spur recovery. This is because so much is emotionally tied up by a woman with her sexuality, her reproductive organs, her prospects as a mother. It is perfectly understandable why such feelings and fantasies would be disavowed and put into others in the face of the relentless assault of the endometriosis and the dramatic possibility of being saved from a fate so dreaded. To be sure projection is a high level defense and leaves room for what is disavowed to be returned to the individual through adequate understanding and interpretation. You will encounter this clinically all the time.

In endometriosis the recovering patient grapples with the anxieties of her dilemma by seeing them in others. Here we can witness the dilemma of bouncing back and forth between anxiety and depression. I will have more to say about this shortly. It is important to keep in mind that when the helpers cannot argue the logic of projection to a patient, at best we show them what is accomplished by this by these actions but we maintain our alliance with them. We rarely want to take an adversarial position with a recovering endometrial patient.

The next chapter heading I am calling "In the Psychic Dead Zone"; In the Psychic Dead Zone. In endometriosis during recovery it is virtually impossible to know early on that one is better, "better", even when the pelvic pain, the muscle pain, the constipation, etc., etc. all begin to abate. Remember by the time we see many women they may have already undergone two, three, five, seven unsuccessful surgeries, particularly if the previous surgeries used ineffective ablation techniques as explained by Dr. Regard. Although the actual surgical movement can be heralded by a patient and her family as a turning point, in point of fact the correlation between getting better and a moment of having undergone surgery is lower than the patient and her family hopes is the case. Even after surgery there is absolutely no way in which a young woman can know that they are immune from the return of symptoms at any moment. Recovery is a process and rarely follows an upward linear slope. She scans her body for signs interpreting every appropriate receptive signal as possible evidence that the disease is back. What metric can she use to discern if she is safe or not? Abdominal pain, bleeding, excessive fatigue, cognitive dulling? All are frighteningly non-specific. She will just wait until her next cycle and wait and wait and wait. The heavy knowledge, the unspoken Sword of Damocles, which is perched above her head, is that she can know that it is back but she cannot know that she is safe. After years of this she unconsciously brings about the safety that living cannot afford. This is an adaptive move towards finding security. It is not pathological even in the most cynical interpretation. She enters what I am calling the psychic dead zone. It is actually a natural response to retreat into a kind of zone where a woman feels dead inside.

Do not mistake this for pathology. It is a compromise formation, a balancing act which actually serves to keep alive the life forces inside of her. A better analogy than pathology is hibernation. She hibernates.

When in the dead zone there is a kind of depersonalization in which things feel unreal and life feels as if it is lived by someone else. Time itself becomes inverted. It is important here to distinguish between chronological time and endometrial time. In endometrial time a smooth temporal passage is replaced by a sense of flow that is recursive, disoriented, pocked. One day can feel like an hour, a minute can feel like two days. The passage of time has a life of its own. What is remarkable is how so many women can explicitly identify the moment of the day when she has crossed over into this kind of psychic dead zone. The transition is so dramatic that the events surrounding it are burned into memory. The exact same recollections occur when she emerges from the dead zone. This is of particular import for us today. It is really what I want to focus on. And re-engages with the world which she has so far, for so long longed for. But since it is a protective cocoon it is not so easy to crawl out of it.

What we need to understand is that just as she once entered this zone so too can she depart from it. Just as she could identify when she entered so too can she locate the moment when she leaves the zone of psychic death and re-engages the world. Helping an endometrial patient to return to life, to leave behind this terrible dead zone is a turning point in a return to healthiness. Women cross in and out straddling the line between feeling alive and feeling dead over an extended period of time. There is a push and pull to the forces here of life and death. It is important to note that she cannot be urged out, hectored out, argued out, pleaded out, rather she must slowly regain those sea legs that allow her to know that crossing back into life is something that is in her best interests.

In general the endometriosis patient is not to be hurried. She gets where she is going at her own pace and passing into the zone of life away from the zone of psychic death becomes a kind of proclamation or manifesto that she is indeed getting better.

Of special note too is that it is precisely when she crosses out of this dead zone that the sadness of all that she has lost is likely to strike most viscerally. Paradoxically, this sadness is the single best predictor that things are going well. You will see this and the one thing you should be careful not to do is to try to strip her of her sadness. The sadness is to be respected and not to be forced away because it is painful. In point of fact the sadness may never go away but this is not the anguish over past loss that we often see in depression or the fear of future loss that we see in anxiety. This is sadness that will always be with her perhaps but which contains within it the possibility of some kind of generativity. It can help guide and frame important decisions. For example, the woman with severe endometriosis from ages 15 to 23 may, if she is fortunate enough to indeed get better, has a wisdom and maturity about the life that she now wants to lead that belies the evisceration of eight years of her life.

I want to emphasize another dilemma I just alluded to it, of the recovering endometriosis patient; the crush that she feels between anxiety and depression. I am now going to collapse 500 years of research and tens of thousands of articles into one sentence. Anxiety is the internal apprehension that terrible things will happen in the near future. Depression is the guilt laden feeling that terrible things have already happened in the near past. How do you like that? Quite a treat. Now you never have to read anything about anxiety or depression again. A major part of recovery lies insensitively being able to outline the fantasized nature of these internal states and attributions and resist the tendency to have each grip the recovering woman in their own vice. In doing so I have witnessed something very interesting and that is that the anxiety and depression wane in parallel to one another. Absolutely fascinating to see. To be more specific, blaming oneself, this is an example, blaming oneself for what she has done becomes less harsh at the same time as the anticipation of a better future arises.

The next section of my talk this afternoon will be, is, what I am calling "The Biological and the Psychological "- The Biological and the Psychological. There is another distinction useful to make that facilitates the uneven and at times faltering steps towards getting better. The distinction is between the emphasis on the biological versus the emphasis on the psychological. This is very tricky. The importance of this shift cannot be over-emphasized. Prior to surgery and including the first few months after, it is crucial to tend the woman with endometriosis with the realization that she is engaged with a true disease process. There are just too many horror stories I have witnessed and as well that are alive on the endometriosis gossip circuit about how women were told things, repeatedly, like "It's all in your head". Or were put on psychiatric meds for bogus reasons as if these would somehow cure the endometriosis, or smugly told, "The pain will go away by itself" and so on and so forth.

The rule of thumb that I want to put forward now for you to grab hold of is that it is pointless and harmful to treat a biological illness as if it is a psychological event. But it is as well the same to treat a psychological event as if it is a biological illness. The switch over can be at different times with different endometriosis patients. But the helper should be sensitive to this and be flexible enough to make this shift when the time is right. Further we should be prepared for gradual rather than abrupt recognition. For the helper, let me be very clear, this is the time he or she is most likely to make clinical mistakes. As strange as this may sound, with certain women what at one time was the cruelest thing to say "there is nothing wrong with you, it is all in your own head" can, after one year of successful adaptation after surgery begin to be something necessary to convey to her. But again, not in an adversarial way. Normal everyday life, the goal, the fervid goal, of so many for so long will hopefully be gratifying but as well definitely presents adaptive challenges.

The old saying "better the devil you know than the devil you don't" is not far off the mark here. It can be tempting to believe that one is still sick with endometriosis. Restarting a sexual life can be a checkered event. There can be unconscious guilt about having recovered.

"Implications", this is my last section - Implications. As far as I am concerned there are two threads that then follow from what I have discussed with you today. And then, I want to identify two kinds of aloneness, aloneness, that have to be addressed separately. First, one thread is support and education. There cannot be enough education about the psychological realities the woman with endometriosis encounters as she gets better. This includes the immediate family as well as the patient herself. Any temptation on the part of the woman or her family to play ostrich to these realities must be understood for what it is, self destructive denial. Here we can speak of the aloneness of being by oneself, of not knowing what is happening, of lacking community which can be ameliorated by the introduction of support and community. Support services are now available from groups, wonderful groups such as Endo Warriors. I hope a representative of this group is here today.

But secondly, and just as important as support and education, is the necessity for a cadre of clinically sophisticated professionals or para-professionals, well trained and understanding nuanced emotional states to be available. This is exactly what at present is lacking in the endometriosis community. Can you join myself and Dr. Seckin, a surgeon who is nevertheless exquisitely sensitive to psychological factors in trying to bring this about. Many of the details I describe today are imperceptible to outside observers and are really delinked from behaviour - they just cannot be seen. The observer must utilize reasoned inferences that stem from knowing how the human mind works. Please let us not forget that the worst grieving is alone.

Here we see a different kind of aloneness. It is the aloneness of not having an internal presence that understands and understands and understands no matter what. One patient has learned to reprimand me when she feels this aloneness by telling me that I am being an "objective observer". Now you might think that this is a compliment to be called an objective observer but actually she means it as a scathing criticism. When I lapse into being an objective observer I actually create experience with her that for her is emotionally devastating. Why? She feels that unless I am present and understanding at all times, particularly when I am not there in the flesh in between our meetings, that she will be all alone and unable to move forward. And that aloneness is something that she cannot tolerate. This is not just a fantasy it is actually an accurate depiction of something that is needed to move forward just as much as water to drink and air to breathe.

Thank you very much.