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A letter from a "chronic patient" on learning about the neurobiology of ED
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A letter to F.E.A.S.T. where a long-term patient tells how research on organic differences and biological predisposition makes her feel:

"I am among the "old" brains, chronic patients (with the triple whammy of having a trauma issue/PTSD and bipolar disorder ... also family history and a sister with an ED), and have labored for years/suffered for years from believing that I was not "thinking hard enough"/trying hard enough to get out of this. It didn't feel like a "choice" (though I know that behavior and action *are* choices, however difficult) but a drive that I constantly try to override and overwrite."

  

2008

I find less hope but maybe more understanding and less personal guilt, self-hate and frustration with recent reports/research on organic differences and biological predisposition.

Watching Dr. Sloan Madden's presentation on the neurobiology of eating disorders was devastating for me. I felt a deep grief for at least a couple weeks after listening, and I still do ... though it has probably ebbed to resignation that I have been living with an eating disorder during a period of mystery about them and that the generation upcoming is likely to be the one that benefits from all the things research is learning from me, from treatment inadequacies, treatment failures ... and treatment successes.

I am among the "old" brains, chronic patients (with the triple whammy of having a trauma issue/PTSD and bipolar disorder ... also family history and a sister with an ED), and have labored for years/suffered for years from believing that I was not "thinking hard enough"/trying hard enough to get out of this.

It didn't feel like a "choice" (though I know that behavior and action *are* choices, however difficult) but a drive that I constantly try to override and overwrite.

That I must be a horrible person if I was choosing anorexia over what is a really great life and family of supportive people ... and a previously super-achievement-filled career and volunteer/personal resume.

That I must have been a horrible, unresponsive kid and that my parents have suffered (in the early 1980s, when I was diagnosed, and still) all the stereotypes ascribed to parents of girls with anorexia.

Being a patient with anorexia is a very demeaning experience, yet the only way to even a doorway out has been to subject myself to the treatment-philosophy-of-the-time and a particular medical director's personal view. And they all think their approach is the *right* approach and that the other docs were misguided.

They tell you this. They tell your husband and your family that the others were misinformed and that "this way/their way" is *the answer* You end up at another program, and you get the same thing ... different philosophy. Rinse and repeat. It leaves the patient in the middle but no better, unless you luck out.

I had a psychiatrist tell me that, for me, this was a chronic but manageable illness somewhat akin to multiple sclerosis and that I should use the hospital for stabilization or health crises but was better off, other than that, at home and surrounded by my family. That they were better "treatment" (essentially having a life beyond/outside appointments) and home a better environment for healing and wellness than a legacy of institutionalization.

He told me: "We can do as much for you at home." I have been more stable and more healthy under his care and my current "team" than under any particular program ... no matter how long I was there.

I listened and wavered between his advice and all the times inpatient treatment teams told me I just needed to leave my parents, husband, kids (choose your stage of life) and commit to months and months away in hospitals ... that it would be worth it, b/c I would be there for the *rest* of their lives (and mine) and not have to leave ever again.

But I am convinced I would have to live in a residential setting for more than years to possibly "get over" anorexia. There is a trade-off in modeling less-than-healthy-and-adequate self-care vs. absentee parenting. Probably, when they are adults, my kids can say how that worked for them ... or didn't. They are now teens and have been fortunate to have a rock-solid dad and good emotional support of their own but have echoed (in family sessions) my current conclusions.

My gut instinct that it is better to live in the real world, because that's where real life is, has been borne out to some extent. If you are so compromised that you can't function, then hospitalization is imperative. But had I stayed in units/on wards for months-to-a-year every time it was suggested, I would have missed out on more than I already have ... and, I believe ... to no better end.

I have been in the hospital for as long as four months IP, plus weeks of day treatment. I have been to NYSPI and part of their studies. I have been to UPMC when Dr. Kaye was there ... re-fed and researched at Hopkins ... re-fed and researched at UNC-Chapel Hill under Dr. LaVia/Dr. Bulik. Menninger, under both Drs. Zerbe ("The Body Betrayed") and the late Dr. Sokol. I have been to many big and small programs in between.

I have had "loving guidance" and touchy-feeling therapies; I have had totalitarian protocols. I have had trauma treatment, EMDR; biofeedback; every kind of medication; really wonderful professionals and really incompetent and/or insensitive ones. I/We have (and insurance companies have) spent hundreds-of-thousands of dollars we did and didn't have. This illness is an ongoing expense, and the implications of long-term malnutrition means it always will be.

But all they had to offer was the best standard of care they knew at the time ... and it turns out they didn't know much (by their own evidence-based reviews in journals). And, it turns out, that also doesn't seem to be enough when you had already been anorexic for 10 years when the cycle of admissions began ... and worse when it's yet another 10 years down the road now. And worse yet when your brain found hypervigilance far earlier with a childhood trauma (and I realize that many or most people with EDs don't necessarily have any particular physical or emotional trauma).

Therapy and all the CBT and DBT in the world have not helped me conquer anorexia nor its persistent drumbeat of irrepressible anxiety, obsessionality, rigidity and perfectionism.

All those experiences have given me valuable tools for many parts of my life and for just getting through, but no medication ... therapy ... even re-feeding has squelched what I always told treaters felt like something wrong in my brain ... not my thoughts but just my very being ... not at all dissimilar to my child with aspergers and his "wiring" and sensory integration issues. A different way of perceiving and processing the world.

I think I am in that very small minority of patients that just don't get better ... but not for lack of trying, treatment, insight or action. And I never give up, because I seem to have an unrealistic optimism that things could still change.

I don't want to be this way, and the most difficult thing about "being this way" is that it remains regardless of re-feeding, medication or psychotherapy. I may be functioning at a greater or lesser cognitive or physical level. Emotional affect may be more or less pronounced in one way or another.

But, inside, my brain is still the same. I feel the same. And it isn't just about me ... it's about how my "same-brain syndrome" affects everyone in my life. There has to be something else ... another way.


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