Living with Loss

As I see it's been a few weeks since my last blog post I am realizing I need to state what has been occupying me.

Jenni Schaefer's beautiful Mother's Day letter brought me to a new level of understanding that I need to respect the fact that I am constantly grieving losses that eating disorders have brought to my life.

We still don't know if our daughter will ever be recovered. Millions of people are living with this type of uncertainty. On many levels my daughter has been taken from me. I have been told I have a lot in common with parents who have had their children abducted and don't know if they are alive or not. This realization has led me to spend some time doing this grieving I didn't know I needed to do.

Luckily I have a wonderful coaching colleague who specializes in the caregivers journey and helps people process grief. I am now in a much better state of mind and can allow creating to happen again. Thank you Rita Goldhammer of Pivotal Crossings for helping me to do this valuable work.

One of the things I've had to grieve and let go of is that what we experienced in our daughter's treatment is being called: Treatment Failure. It was both exciting and sad to learn more about the very promising Family Based Therapy approaches in talking with Laura Collins of F.E.A.S.T.

So I am done with the "What Ifs" and am excited to talk with and interview families who have found successful recovery via Family Based Therapy!

I would love to hear of your positive experiences of incorporating FBT into traditional treatment models.

Thank you Jenni Schaefer for this mother's day gift!

Happy Mother's Day to all who are, have been and who have mothers. This mother's day gift came to me via another mother's child and I am so happy to see it. Than you Jenni for helping all of us who love a child with an eating disorder to hear what we have so badly needed to hear.

IT'S NOT OUR FAULT. - Thank you Jenni for saying it so beautifully and gracefully, you have given an amazing gift to every mother who has had a child with an eating disorder. I believe your words will help to heal millions of mother's hearts.

I know I am not alone as a mother who was very clearly given many many messages that my daughter's life threatening illness was somehow a result of my parenting. Not only was I scared out of my mind that she would die, saddened beyond description at what this disease was taking from her and us but I was at the same time blamed.

What we all needed was help. Encouragement. Support. Tools. Kindness. Answers. Love. Instead what happened is now being called a "parentectomy" and that didn't help anyone.

Thank you Jenni for your beautiful letter, your gift to all of us mothers of children with eating disorders. In my world of believing that ANYTHING is POSSIBLE, I picture your letter in the family waiting rooms of every eating disorders clinic in the world. I see it in all of the curriculum materials that (will soon exist) to educate ALL healthcare providers so that they know that eating disorders are complex bio-psycho-social illnesses and that blaming the parents is an antiquated way of treating the family.

Moms out there, I would love to hear your stories of hearing words such as Jenni has shared with us and her mother.

http://www.huffingtonpost.com/jenni-schaefer/mom-its-not-your-fault_b_565831.html

Eating Disorders Parent/Family/Friends Support

Join us tomorrow for group coaching to assist you with your journey in caring for someone with an eating disorder.

Parent/Family Friend Support Group
$10/person or $15/couple
Every other Wednesday beginning April 7th
5-6:30pm
Dunn Bros. Freight House
www.dunnbros.com
201 3rd Avenue South
Minneapolis, MN 55401 (Next to the historic Milwaukee Road Depot) Phone: 612-692-8530
Call or email Becky to reserve a spot Becky@hopenetwork.info
952-451-5663

Oprah and Eating Disorders

What are your thoughts about Oprah's 8 episode series that will document a group of patients as they undergo a 42 day eating disorder recovery program? Will it be done respectfully? Will they sensationalize the experience? Will you watch?

I am hopeful that this show as well as the E! eating-disorder mini series will bring a lot more attention to eating disorders and hopefully help with :

• Reducing stigma
• Increasing awareness about treatment for patients, families and health care providers
• Improving diagnosis rates and referrals to treatment
• Increase awareness of insurance issues and improve reimbursements

That's just for starters. Please add your wish lists. I could go on and on but want to hear what you hope for.

http://topnews.us/content/218696-celebs-help-spread-word-about-eating-disorders

I would love to hear your thoughts.

FREED ACT Introduced to Senate

This is big exciting news! Okay so I admit, what I know about how an Act becomes and Act is what I learned from watching Sesame Street with my kids...but I know this is big news.

What I do know is that on April 27th two MN senators and and Iowa senator introduced legislation aimed at fighting and preventing eating disorders in the United States! That is BIG NEWS and it's about time.

Did you know that:

• The NIH spends about $1.20 in research funding per person with an eating disorder compared with $159 for someone with schizophrenia, which has a much lower incidence rate, said Jillian Croll, director of education, research and program development for the Emily Program, a Minnesota company that offers comprehensive eating disorder treatment.
• “Most physicians get between zero and two hours of eating disorder education in medical school,” Croll said. “Yet they often are on the front lines of screening or assessing someone with an eating disorder, and they just don’t have enough information.”
• At the University of Minnesota, about 5.3 percent of students reported struggling with an eating disorder, according to a 2007 Boynton Health Service survey.

The details of the FREED Act are below if you are interested. I'll be sending out a notice to all on my newsletter list. If you want to be on that please comment here and I'll add you or visit my website: http://www.hopenetwork.info to sign up!

See my facebook page to see links to some articles on this. http://www.facebook.com/HopeNetworkBeck


To confront the growing issue of eating disorders, the FREED Act will:

* Expand research on the prevention of and effective treatment of eating disorders: Coordinates research on eating disorders at the National Institutes of Health and across the federal government, and creates research consortia to examine the causes and consequences of eating disorders, and to develop effective prevention and intervention programs.

* Improve the training and education of health care providers and educators: Authorizes grants to medical, nursing, social work and other health professions schools to train health care providers in the identification and treatment of eating disorders, and grants to train teachers and other educators in effective eating disorder prevention, detection and assistance strategies.

* Improve surveillance and data collection systems for tracking the prevalence and severity of eating disorders: Tasks CDC with addressing the lack of accurate information on the incidence and severity of eating disorders. Requires the development of new methods to accurately collect, analyze and report epidemiological data to ensure that the incidence of eating disorders and related fatalities are better understood.

* Prevent eating disorders: Authorizes grants to develop evidence-based prevention programs and promote healthy eating behaviors and in schools, recreational sports programs and athletic training programs.

* Build on existing reform efforts to ensure that treatment is available and affordable: Creates a patient advocacy program to aid people suffering from these diseases and their families negotiate the health care system. Incentivizes states to ensure that adolescents covered by Medicaid are diagnosed and treated.

Caring for someone with an eating disorder

Now is your chance to share what your perspective as the family has been with a young researcher in Australia.

Caring for someone with an eating disorder: Different perspectives

My name is Kerri Coomber and I am completing a PhD in Psychology looking at the experience of caring for someone recovering from an eating disorder. While we now know a lot about what this is like, we don’t know whether the person in recovery and the carer see the experience of recovery and caregiving similarly or whether their experience is different. I’d like to invite you to share your perspective.

Both carer and the person with an eating disorder would each complete a short questionnaire. You won’t see each other’s responses and what you say will have any identifying information kept separate. I will give each of you a code number so I can match up your questionnaires.

The carer questionnaire ask you about how the eating disorder affects you, as a carer, how you deal with everyday problems related to the eating disorder, and how your general health has been lately. This questionnaire will take you approximately 20 minutes to complete.

The questionnaire that the person with an eating disorder will complete will ask you about your eating disorder, where you feel you are on the road to recovery, and how you think the eating disorder affects your carer. This questionnaire will take you about 20 to 30 minutes to complete.

If you have an eating disorder, or you are a carer of someone with an eating disorder and you would like to take part please email me at kcoomber@deakin.edu.au, or phone me on (03) 5227 8436. Can you please let me know your address so I can send you the questionnaires, the age of the person who has an eating disorder, and whether the person with an eating disorder has bulimia nervosa or anorexia nervosa. The last two pieces of information are needed to make sure I send you the appropriate version of the questionnaires.

Media and Eating Disorders

I promise to delete any rants I find myself making here this morning. Tuesday I flipped through the April issue of Minnesota Monthly as I was waiting to get my haircut. Now, I was forewarned by my dear editor Connie Anderson of Words and Deeds (she is awesome by the way) that these photos were going to be in this issue. I already had Sue Stein, who writes articles for me, working on a letter to the editor about these photos.

I can't believe how angry I got sitting at my hairdresser's. I had already seen one of the photos.

When I talked with Sue the next day, Wednesday, I got angry all over again. I promise to remain calm today.

In talking with Sue I described what I saw and the question that formed for me was: "How would photos of an emaciated woman who looks like she might keel over any moment make someone want to buy the clothing she is modeling?" That was after poor Sue had to hear much ranting.

I have been told I dress nicely, usually look fashionable so I don't think I'm completely in the dark about what looks nice. I didn't even notice the clothes...couldn't tell you. It is supposed to be a piece about fun new spring fashion. HUH? It was done all in sepia tones, no other color. The whole spread made me feel sad.

The poor waif made me think of my previous cleaning ladies who are immigrants from Ukraine. They used to tell me sad sad stories of having only 1 potato for a whole day for their family because other desperate people had stolen the food from their gardens and there was no food in the grocery store.

When I showed the photos to my hairdresser she instantly said that just looking at her hair was a strong indicator that she was undernourished. I stood in awe looking at this young woman with her scraggly, dry, thin hair—no smile (her teeth were probably in decay too) and all I could think was: Who in the magazine thought this could possibly be a good idea? Was this the "brainchild" of the stylist Jennifer Dickey? How about the photographer Joel Larson? What did he think? Then I saw that the byline on the piece was lifestyle editor Elizabeth Dehn and wondered, If she had a child with a life threatening eating disorder, would she be allowing such triggering photos to be published?

I normally don't name names but my blood is boiling on this one. I am on the record saying, "The media does not cause eating disorders in my opinion, but they can contribute to deadly results in those who are pre-disposed to eating disorders."

In this case I can clearly see how it might go down. A young person (male or female) could see this sickly model and think, Well, she is skinnier than I am and she is still alive so I guess I can lose even more weight and still live. Yes, it is distorted thinking but that is how the eating disorder sounds and it happens every second of every day.

I want to educate those in the media to see this concept as I truly don't believe they are evil people intentionally trying to kill young eating disorders sufferers. They just are unaware of the damage that such photos could create.

Besides, "Who would be inspired to buy those clothes anyhow? I still don't get it.

My plea to Minnesota Monthly editor Joel Hoekstra and Minnesota Monthly Publisher/President Steve Fox is this: Please take responsibility and learn about how what you print could be contributing to life threatening eating disorders. Did you know that eating disorders are the most deadly of all mental illnesses? At minimum 11 million Americans are sick with eating disorders and you can play a role in contributing to their wellness by your decisions.

I tried not to rant. I left A LOT out - thank goodness for the delete key.