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F.E.A.S.T. Parent tells her Family Story to Clinicians
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IAEDP Chapter Meeting: a F.E.A.S.T. Parent tells her Family Story to Clinicians

Presented by Nancy R.
For the Parent Stories series at F.E.A.S.T.
(Spring 2011)
Thank you for the opportunity to welcome us parents to share some of our thoughts as parents of children who have or had ED. I applaud this forum and hope that this is only the beginning of more opportunities that can improve communications between the village that supports our children.
I, of course, didn’t have much time to prepare for this meeting, until today and my initial reaction was simply to tell my story…and when I say my story, I am referring to my son’s story, but frankly you can pick up books and hear many stories…so I then I realized this was a great opportunity to really speak my truth, as a parent, to the professionals, in order to help you, help others…as that is what really matters most…hopefully making a difference, perhaps giving you some food (excuse the term) for thought in how you treat patients if you currently treat them, or what to consider if you are contemplating treating folks with ED.
That said, I will share a quick synopsis of my story so you have some idea of the background.
My son began on growth hormone injections at age 13 as recommended by his pediatric endocrinologist. He began growing quickly and losing weight in the process, which seemed logical, over the course of a few years. When he was 15 I remember very vividly the moment the ED tsunami hit, that is when I realized we had a problem.….we were at a bar mitzvah and I looked across the room and saw one emaciated young man and I knew right then and there he had an ED. I brought him to his regular pediatrician, who I shared my thoughts with and she felt ruling out any other problem was the conservative approach…After many tests, she was wise enough to realize that she was out of her league, and yes he in fact had anorexia and referred me to another doctor, who referred me to a therapist, who referred me to a dietician, and ultimately I sought the aid of a psychiatrist. We were very busy for over 3 years with this outpatient regime, which, for my son, had no affect what so ever. Our lives revolved around what appointment we had what day and we did have one each day. I felt helpless, terrified, vulnerable, clueless and exhausted. I took it upon myself to get educated and attended a conference sponsored by the National Eating Disorder Association, read what ever I could get my hands on and being the mother bear that I am, after 3 years of no results, I researched facilities that would be appropriate to treat my son, on an inpatient/residential basis.
Where did one go to get treatment for a teenage boy with severe anorexia? The facts were that my son was 5 10, 103 lbs, and was walking around with a heart rate of 32. He had passed out on a couple of occasions and each day I lived in fear that he would not survive.
I was on a mission…Besides attended a national NEDA conference, I toured several residential ED facilities all over the country. I evaluated what was his best option and decided that Rogers Memorial Hospital was the best fit for my son and our situation. After 3 year of living hell; lots of negotiations with my son, with his father, with insurance companies, and with his team here…he was admitted to Rogers the day school ended in his junior year of High School, when he was 17. He spent the summer at Rogers, gained over 30 lbs, his brain started working and he has maintained his weight, his sanity, while I have maintained mine, and today he is a thriving sophomore at a University out of state, on the honors role, socially active as the VP of his fraternity, and employed at the Attorney General Office. He has a full life, a bright future and is fully recovered from his eating disorder.
That is really as short as I can make that story…but just know that I could speak all night about what it is like living with a child with an ED; what my experience was with the professionals we use; the ups, the downs, the ins, the outs…but I would rather spend the time on what I can share with you in the hopes that it will be helpful to you and your clients.
Treating ED, takes a very special person. It is not for everyone. If you currently treat or are considering treating this community, I urge you to be painfully honest about who you are and what your goals are as a professional and here is why. Treating ED takes a lot of effort, is probably not going to make you rich, it is challenging beyond comprehension and has one of the highest failure rates of any mental illness.
The following is of course, my opinion - my thoughts. Not always gentle but authentic and heartfelt and I hope you can take away a least one idea that will help you, help your client.
  • Stay current. If you like learning, growing, evolving, and are committed to additional education on an ongoing basis, this is a good start. In other words, if you have many years as a therapist with a lot of initials after your name, it is simply not enough. For example, I have been in the technology field for over 30 years, assuming I got a PhD in technology 30 years ago, and did not pursue any education any further. My skills sets for today’s world would obviously be antiquated and obsolete…this is also the case in ED treatment. So no matter how long you have been practicing or how many initial you have after your name, it doesn’t necessarily equate to your ability to treat ED…commit to staying up to date.
  • Encourage your patient’s family to learn more, attend conferences, read books, join chat group on line….give them resources-- keep the list updated and accurate. Helping the parent ultimately helps the patient. Parents feel lost, vulnerable, helpless and need guidance. Provide that for them.
  • Understand it is not the parents fault. I liken ED to a perfect storm, how and why it occurs is a multitude of factors that when aligned, create this mental illness, but it is not about food, and it is not the fault of the parent, so reassure them, they didn’t cause this problem.
  • Be patient and set expectations of the parents to be patient. It is a disease that there is no easy fix, no easy answers and takes a long time to recover from, if one can recover at all.
  • Set expectations for the parents…I know I just said this but is SO bares repeating. Help them anticipate what may happen along the road to recovery. Explain to the family, in advance, the possibilities of what the process might have in store. When my son was admitted to Rogers, I was told that he might call and tell me how bored he was and how there was nothing for him to do…I was told upfront that this might be his reaction…Rogers purposely has “down time” in their program as they feel it was an important component to have their patients, learn to self sooth….so when my son called me with this complaint, I was prepared to hear it, deal with it and had no anxiety related to it. I cannot emphasis enough the importance of informing your families of what reactions might occur. It assists the parent to be prepared and eliminates unnecessary anxiety, they might be feeling otherwise.
  • Yes, males get ED. Yes, males that are heterosexual get ED, Yes, males who are heterosexual and are not obsessive exercisers get ED. In otherwords, don’t stereotype. Further reach out, to your male counterparts, encourage them to attend your sessions, your workshops..we need male therapists to feel engaged and a part in this community.
  • Therapy involves the whole family. If your patient is under 18, include the family as much as possible. If over 18, encourage the patient to allow communications to the folks they are living with. Be prepared to deal with the family members. If you work with ED, expect to treat the family, not only the patient.
  • Be able to work with a team and collaborate. Treating ED, is not a one woman/man show…it takes constant, consistent communication with the other members of the team…the therapist, the nutritionalist, the psychiatrist, the doctor.. It is vitally important that you be able to cooperate with one another and come to an agreement for the patient’s sake. Avoid competition and politics. Be able to negotiate, listen and adapt to change. Be open minded.
  • Leave your ego at the door. Treating ED, does not provide many accolades or recognition. You need to be prepared to not to take things personally, it is not a power struggle, it is not about who is right and who is wrong, it is about getting a solutions and results. Be able to delegate and confer with other professionals, regardless of your experience..embrace a different perspective if you are not getting the results you want.
  • Be committed. Treating ED, isn’t like treating someone with marriage problems, job loss issues, childhood behavior challenges, it is about saving someone’s life, so be passionate about your chosen field.
  • Be flexible, be available, be ready to respond. Set boundaries yes, but it is like the difference between an orthodontist versus an OB/GYN. Treating ED, is a lifestyle choice, not just a job.
  • Don’t be in it for the money…that may be obvious at this point. Your client’s parents have limited funds, mental health parity is a fantasy in this state, insurance companies are irrational..they would rather spend money putting a feeding tube into your kid’s stomach, then to pay for therapeutic treatment. Your time working as an ED therapist, isn’t only the face to face time you spend with your client, it is the time you spend talking to the other team members, coming up with a game plan, talking with the parents…in otherwords unbillable hours. Be prepared for this reality.
Encourage your client’s family to attend our phenomenal parent support group. I attend a family support group designed for loved ones of folks with ED. We meet 2 times a month and I have been attending for 5 years and although my son is recovered I still attend and plan on attending as long as we have meetings. It will take a lot of hand holding away from you, the therapist, as we, as parents, hold each other hands. There is no reason to feel threatened about our group and I invite you, in fact, encourage you to attend a meeting.
Treating ED, is a large sacrifice, has high risks and very challenging….BUT you CAN save a life.
Being a professional treating ED, is not for everyone, and that is perfectly OK. I only urge you to be honest with yourself, evaluate whether you want to embrace the challenge, the obstacles, have the gift, and the knowledge to commit to the task.
Although I had to seek treatment outside of our community I see tremendous hope and promise as you have established this chapter of IAEDP. I understand that there are more resources here, than there were 6 years ago; that outpatient treatment centers for males and females are being created and that there are many that are low or no cost support groups available. I congratulate you all for the village you are creating for our community.
Thank you for considering and listening to my voice.


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