Trip #1. July 22, 2005. A dark room. Table, desk, chairs. With me is a staff psychiatrist and psychiatric nurse at the Green Oaks Psychiatric Facility. Nearby are my brothers Mark and Jeff. As I sit and listen to the doctor’s questions, I have a vague recollection of my younger brother rousing me from my bed, an angry confrontation, my .45 automatic lying on my nightstand. Then shock and confusion on the drive to the treatment center.
The residuals of cocaine, Xanax, and Jack Daniels are still coursing through my veins, but the fog is lifting slightly. Raging anger is settling in its place. Battle lines are being drawn in my mind. They want to take me prisoner. It’s war. I’ll lead the inmate rebellion.
Questions from the shrink pierce my anger like tracer rounds. What drugs have you taken? How are you feeling? Do you want to harm yourself? The anger is powerful. My belief is that if I died, it would teach everyone a lesson and do them a favor.
Trip #2. April 7th, 2007. I am in a daze. An hour before, I had been awakened by my girlfriend. She had been out of town visiting family for Easter weekend. I had no idea what day or time it was. Not realizing the weekend was over. Two days had passed. I had blacked out. There was cocaine and empty alcohol bottles in the bedroom. My black-market Ambien bottle half empty. No idea how many I had taken.
The familiar ride to the Green Oaks treatment center. The familiar haze. In the parking lot of the treatment center, I realized that if I did not get honest starting at that moment there would be no hope for our future or my future. Right there in that parking lot, through all the drugs, the tears, and anger on her part. It was time for the self-styled emperor to put away his fancy new duds. There was no control. There was no life. There was no future. I was naked in the mirror. I finally saw Brian. What I saw made me sick to my stomach. I had failed at life. I had now in my mind failed every single person who had ever loved me. If I did not get honest starting at that moment, there would be no hope for a future with the people I love and who loved me. Families love. Families care. Families can also distance themselves when no effort is made to at least take one small step towards recovery.
Trip #3. October 15th, 2015. Back in the Green Oak’s parking lot. This time I am alone. A rush of feelings and memories as I pull into the parking lot. My brothers are in fear. My girlfriend(now-fiancée) in tears. The intake desk. The familiar room where I sat with the attending psychiatrist.
This time however, I am not in crisis. This time I have been in recovery from drugs, alcohol and eating disorders since April 8, 2007. My thoughts are not of suicide. My thoughts are about reaching out to others who came before me and came after me at Green Oaks. Letting them know that recovery is possible. This day, instead of needing help, I am there to help. Letting people know that in the worst possible circumstances, Green Oaks was a positive for me in getting me thinking about recovery even though it would take two trips to arrive there. Without Green Oaks, maybe a different, tragic road. There is no shame in psychiatric crisis treatment. That is often when we need it most, even if it does not seem like it at the time, and we fight with all of our strength against it. Let yourself be loved by those who care about you. Let yourself be helped by those trained to provide it. Thank you to my brothers and fiancée for loving me. Thank to you Green Oaks for helping me.
“Jenny” is a pseudonym to protect her privacy.
Jenny’s thirteenth birthday was wonderful. At 13, she loved Japanese food, and going to a hibachi grill with her family and friends from her dance class was a great time. Everyone laughed, told stories and enjoyed life the way happy “tweens” are expected to. Like many with the temperament that indicates a genetic vulnerability to anorexia, she excelled academically and outside of school. She loved dance and was on three competitive dance teams and team captain of her hip-hop team. She also loved art and played the violin. Jenny has a passion for animals and volunteered at a cat shelter each summer. She loved spending time with her family and her little brother. Jenny was a happy, “normal” young girl with a bright future and dreams of being a Zumba Instructor and college.
Jenny’s thirteenth birthday would be her last “happy birthday.”
Jenny’s fourteenth birthday was spent in-patient at Brandywine Hospital, the first of several ineffective treatment stays. She was being treated for Anorexia Nervosa after being diagnosed in November 2013. The journey since then has been both traumatic and tragic as her family, who has health insurance, has helped her battle a disease with the highest mortality rate of any psychiatric disorder—10% by some estimates. They have taken their daughter to several in-network facilities and now her outpatient team advises something radically different.
Having played by Aetna’s rules for two years as their daughter’s health has continued to decline, they must now battle Aetna in trying to get Jenny the best treatment in order to save her life. Oliver Pyatt, a renowned treatment facility which employs 24/7 recovery coaches across several years and focuses on integrating patient’s back into “normal” life before releasing them, is the best fit for Jenny’s needs according to her treatment team and parents. They are willing to write a single case agreement with Aetna, however Aetna is refusing. Aetna wants to send them back to the same treatment center that was, by its own admission, not a agood fit for Jenny’s needs.
Members of the outpatient team are directly recommending Oliver Pyatt as the facility best equipped to deal with Jenny’s anorexia and have written letters to the insurer to support their recommendation. One clinician says:
“The Sudol family has followed Aetna’s allowances for two years. They’ve sent their ill child repeatedly to where Aetna permitted. Some of those facilities were excellent and another patient may have succeeded, but Jenny did not. She was too ill and released too soon. This is an extremely difficult and resistant illness and we need to get Jenny off the revolving door treatment cycle. She deserves the treatment that will offer the best opportunity for recovery and which is based on her specific needs. More of the same only keeps her ill longer, diminishes hope and encourages Anorexia to make itself more at home in this child’s brain.”
Jenny is 15 years old—It is vitally important to intervene — and continue to intervene until there is success — aggressively in an adolescent with anorexia as once entrenched the disorder is very difficult to treat.
If there is a chance this new treatment center will work better the insurance company needs to cover it and her team says she needs this center—either way she will be in treatment, the question is where will she have the best opportunity to heal?
Today, Jenny’s fate lies in the hands of an insurance company “expert” who is not only not an adolescent-board certified psychiatrist, but by his own internet presence claims special knowledge in several areas, but not eating disorders. An expert, third-party evaluation, as her parents are asking for, is a reasonable request.
What is happening here is like an insurance company telling someone whose first three blood pressure pills didn’t do their job to back and try #1 again instead of authorizing the use of drug #4 which is not routinely covered, but is frequently authorized; these special authorizations are common. One cannot help but see stigma playing a role in the denial of expanded services for those with mental illnesses.
Readers, please join the Sudol family in imploring Aetna, on Twitter and Facebook, to do the right thing by sharing this piece with the hashtag #ApproveSudol attached. Jenny’s life is on the line and her insurer needs to join her parents in doing everything possible to save her life, health and future.
Last week saw some conflict in the realm of eating disorder advocacy around the role of feminism in eating disorders treatment and recovery. It began with some “live tweets” from the Keynote Address at the 15th Renfrew Center Annual Gala. Renfrew is an eating disorders treatment center (that according to their website, treats only women). Feminist Gloria Steinem delivered the speech.
Eating disorder awareness advocate Brian Cuban and I took note of the tweets. We were concerned about the evidence-based foundation for endorsing an outdated feminist understanding of eating disorder treatment and recovery with the choice of speaker. We were also concerned with a treatment center promoting gender bias in an arena where males are still struggling with high levels of stigma resulting in an exponentially more difficult time than females getting diagnosed and treated for eating disorders.
In truth, all-female eating disorder treatment centers should be a thing of the past if current research informs treatment.
“We are in a gender prison. And gender prisons cause eating disorders” @GloriaSteinem#renfrewconf2015
Brian struggled with bulimia for over two decades and December 1, 2015 will mark four years since my youngest daughter started a “healthy eating makeover” and quickly and dangerously spiraled down the eating disorder (ED) rabbit hole. Because she fit the stereotype of an anorexic (affluent, white, female, teen), she was diagnosed quickly. Because we live in San Diego and have excellent insurance, she got immediate, state-of-the-art treatment at University of California San Diego (UCSD), an academic center that bases their treatment on the latest research findings in the field.
UCSD’s approach is “agnostic” as to the cause of a person’s eating disorder and focuses on treating the ED rather than conducting archeology to determine a cause. Importantly, they do not believe an eating disorder has an “underlying cause,” but rather that it is a biological, brain-based disorder related to a period of a negative energy balance in a genetically vulnerable person. This is not to say there are not those with other issues that will need to be dealt with during the recovery process, but that is very different than those issues being seen as the cause of an eating disorder. It’s an approach that works to save both lives and years to decades of suffering on the part of both patients and families.
For Brian and I both, as relative newcomers to the eating disorder advocacy movement, our biggest shock and disappointment has been with the many clinicians, treatment centers, and even advocates clinging to yesterday’s understanding of eating disorders. When we saw tweets coming out of the 2015 Renfrew Center Foundation we were confused, angry and sad.
Confused: Why would a leading treatment center give a keynote platform to a speaker with a particular, feminist viewpoint of eating disorders rooted in 1985 and which hasn’t evolved to keep pace with 21st century research findings? Why would anyone (Steinem or Renfrew) want to add to the societal “knowing” of eating disorders that reinforces the public to think they are about choice and vanity? Why—and this is a HUGE one—is it okay to espouse an understanding of EDs that makes it sound like eating disorders don’t impact males?
We are wondering how Renfrew and Steinem would explain the eating disorder of my friend’s son—a mere child, growing up running free in nature on beautiful acreage in New Zealand and with no knowledge of gender prisons and no need to rebel against an unjust world?
Angry: Eating disorders have the highest mortality rate of any mental illness and they come with a host of medical complications that can happen quickly and last for a lifetime. “Treatment as usual” (the eating disorder must MEAN something so let’s figure that out first) has an abysmal track record with 2/3 of those affected having a moderate lifelong struggle with a relapse/recovery cycle or a severe struggle ending in premature death (statistics according to the Eating Disorders Coalition). Why continue to base treatment and advocacy on an outdated understanding that is dismissive and cruel to males impacted by EDs?
Sad: Eating disorders affect all genders, occur in all cultures and have been present throughout history; yet the public dialogue, encouraged and promoted by people and entities like Steinem and Renfrew, continues to center around white females. Society funds Alzheimer’s at the rate of about $100/sufferer because we know it can happen in all families and to our own loved ones. Society funds EDs at a rate of about $1/sufferer because they “know” they only happen to affluent white teen girls with controlling parents.
We are sad that for our friends with sons, Rogers Memorial has the only residential facility for men and boys in the United States(they also treat females) as NPR detailed in a piece titled, “For Boys With Eating Disorders, Finding Treatment Can Be Hard.”
If Renfrew wants to make women and feminism a cornerstone of a future conference, we have some Keynote speaker suggestions: Dr. Cynthia Bulik, who is conducting amazing research at UNC with the Anorexia Nervosa Genetics Initiative; Dr. Laura Hill whose research and interpretation of the latest findings have helped countless families and individuals understand why it is such a struggle for someone affected with an eating disorder to just eat; Dr. Roxanne Rockwell, who has helped build, from the ground up, an evidence-based treatment program that produces results for male and female patients alike, or perhaps Laura Collins, an advocate who has worked tirelessly to promote increased access to evidence-based treatment models based on current research.
Eating disorders are not female-only problems and it is long past time for both Gloria Steinem and Renfrew to embrace that understanding and evolve to become part of the treatment solution rather than part of the access-to-diagnosis-and-treatment problem that is, in a very real way, hurting and even killing our fathers, brothers, sons and partners.
JD Ouellette and Brian Cuban
Advocates For Evidence-Based Treatment Availability For All Who Need It.
Anorexic man photo available from Shutterstock