Thursday, January 21, 2010

Chapter 1 - An Unwilling Expert - Learning About Eating Disorders

As we are getting closer to the publication date of the book - I am learning that delays are a "normal" part of the book publishing process and trying to be okay with that. I have decided to put excerpts from the chapters here so you can get a "taste" of what is to come.

Here are some excerpts from Chapter 1.

Chapter 1 An Unwilling Expert - Learning About Eating Disorders

Waiting Rooms
Tiny little rooms
Like jail cells
All taupe and fluorescent lights
Nothing to look at
A symbol of the jail I feel ED has put us in

So scary
So incredibly alone
So helpless–losing hope
I’ll have only a few minutes of some professional’s precious time to ask our questions.

Want to jump out of my skin
So trapped, so tired

Will they ever help us?
We must help ourselves

Is this how all parents of chronically ill children feel?
I am the parent of a child with an eating disorder
And I need a hug!!

– Becky Henry ©2002

When I interviewed the mother of a seventeen-year-old daughter for the story, “We Would Have Done Anything,” if I hadn’t heard the story flow from her lips, I would think this was a movie script–it was so unbelievable. But the title says it all: We would have done anything–and that is so true of most families I have interviewed. A lot of them didn’t know what to do because many health care professionals they turned to for help didn’t know either. What is the first step, second step?

I wrote the above poem when I was sitting in the very tiny space allotted to family members to wait while their loved one is being evaluated for an eating disorder. This treatment center has since made a much nicer area–and they are working to include families more in the recovery process. I had just spent weeks trying to find help and a place that would determine what our next steps needed to be to save our daughter's life. I would have been so happy to have a colorful poster to distract me. The bare taupe-colored walls only served to make me feel that the family was not an important part of this picture. I kept staring at the blank wall and wondering, Why don't they just have a big poster with some bullet points about what is going on, what to expect, what to say, what to do, how to get help for my daughter, for me, my family? Would that have been so hard? Wouldn't that help my daughter if I were informed? Maybe they want to keep me in the dark so that she stays sick longer and then they'll make more money? Oh, am I that cynical or have I lost my mind? Or, perhaps the system is messed up and needs fixing.

I am an “unwilling expert” because I am the parent of a child with an eating disorder, I can emphasize with all of these families I’ve interviewed. I don’t have all the answers and have my own set of questions–but I have found in my friendships with these families and for some, as their coach, talking to others in the same situation really helps–if only to realize “you are NOT ALONE.” This incredible journey has given me a passion to make sure no family is alone and without answers when the uninvited guest I sometimes call "bully" shows up in their family. The families I coach to live better and support their child, spouse, sibling, parent, etc. with an eating disorder more effectively, often share very similar questions. Where do our families turn when they are being torn apart? Where can one mother talk to another mother? They also want answers to questions that range from simple–to almost unanswerable.
• What works?
• What doesn’t work?
• Why is this hitting our family?
• How can we have a normal family meal?
• How do I pay for this?
• If she is out of high school, but too sick to go to college, will our insurance cover her?
• What do we tell family members?
• How do we not neglect our other children?
• How do I know if the treatment center near us has had good results?
• How do I recognize a relapse?
• How do I stay calm when relapse happens so I can support this slip?
• What can I read to learn as much as possible?
• How do we keep our marriage/family together during this illness?
• What do I tell my friends in school about what is going on with my mom?
• What do I tell my son's grandparents about this illness that used to be a female illness?
• Is she going crazy?
• Am I going crazy?

Much research shows that eating disorders are an illness that some people are more predisposed to. People don’t “get” an eating disorder because of how their parents treated them. The old idea often was: This poor sweet girl has a demanding mother who wants her to be perfect, and that’s why she has an eating disorder. The “then thinking (and too often yet today) was: It’s the mother’s fault.

In some of my interviews, I found parents who could look back and sort of see something that triggered the eating disorder, such a her best friend’s suicide, relationship problems, or even her parents’ divorce–however there were other children in the family affected by these things who did NOT develop an eating disorder.

Every family that is just starting to live with an eating disorder always has more questions than answers. As you read the sometimes heart-breaking, sometimes heart-tugging results of my interviews, you can see similarities and differences in the way the person with one of these chronic illnesses handles day-to-day living. And each family tries different things as well to just survive this ever-changing illness, finding what works for them as individuals, as a couple, and as a whole family. Many told me that on some occasions, they knew they were “connecting with their daughter” and could reason with her, while other times they knew that the eating disorder that occupied her head was distorting every single word they said, every gesture they made, as it gained another inch of control over their child’s mind and body.
An eating disorder is when a person has an abnormal relationship with food–and these people can be any size, even overweight–and have a life-changing eating disorder that needs treatment.
For simplicity’s sake, the book most often refers to daughters and their parents. This book is for all people who care about someone who is being lost to an eating disorder: women who have a partner or husband, sisters, friends, or parents–or men who have a son, daughter, friend, partner, co-worker, employee. When you read, insert your own words for that person as you find the skills, tools and hope needed to navigate this challenging journey.

Mostly I used “her” throughout the book because the majority are girls; however I want to stress how commonly boys and young men are showing up more in treatment. They can be pre-disposed as well, and certain things set them off. Some males may be reacting to some emotional upheaval just like females do. People have told me that their eating issues began with trying to “make weight” for a team such as wrestling, or trying to be faster for the swim or cross-country team. Some coaches in certain sports really put an emphasis on maintaining a set weight for males or females, for example: dance, skating, swimming, running, wrestling, cheerleading, and gymnastics. I have heard more than once from mothers of sons in treatment that the treatment facilities have not caught up with the needs of males. These boys are often the only male in the center, and as part of the program, they may be learning to knit and paint fingernails alongside the female patients. A few tell me they didn't mind, in fact they feel they will be better boyfriends/husbands/dads as a result of learning traditionally female skills. Sadly, it's time for treatment programs to develop more programming for the growing male clientele.

I am often asked, "You have studied and learned so much about eating disorders, what causes them? Is it just body image?" Of course, body image is the No. 1 reason girls and women of all ages are so self-obsessed about their weight and how they look. But the causes are complex, and multi-faceted. Currently the research is showing a combination of the following factors: (see for full descriptions)
• Psychological
• Interpersonal
• Social
• Other biochemical, biological and possible genetic
Following are some things that families going through this health crisis have told me they want others in their life to know:
• Avoid being judgmental
• LISTEN (this means don’t talk and try to fix–use your ears not your mouth)
• Remember–this illness is not just black and white, it has many areas of grey
• Be supportive (ask what they need)
• Keep in mind that there is no right or wrong way to do treatment
• Know that we are doing the best we can with what we have
• Be mindful that we are experiencing and grieving major secondary losses. We feel powerlessness over the severity of the situation
• This illness and all of its complicating factors are putting a huge strain on our marriage/relationship, finances and health
• Fear is our constant companion–this makes us a little jumpy and irritable–also affects our cognitive functions including memory. This is normal in our situation please cut us some slack and don't panic

This book is dedicated to all of the incredibly brave individuals who daily reclaim their power over eating disorders. To the families who lovingly walk alongside them believing in fully recovery and reclaiming their own power over fear and panic. My intention is that these stories will give you peace and hope along with tools to effectively support your loved one through recovery.
Tips from Becky:
1. Prepare stock responses for people who don’t know how to support you. Then when you are emotionally and physically wiped out and caught off guard, you can retrieve your memorized comment/answer.

2. Be prepared for people (anyone, whether they are friends, family, care providers), to say stupid, insensitive things. Have another stock response ready for the really insensitive ones.

3. Worry isn’t necessary. Worry is a choice, an option and a waste of time because most things we worry about don’t happen.

4. Getting pulled into drama is optional.

5. You have a choice about how you react to challenges.

6. You can actively choose to let go of suffering (I’m not saying this is easy).

7. Find a way to tap into your fearlessness–it may be facing the worst-case scenario that frees you.
8. Practice separating the person you love from the eating disorder. It isn't easy, but it will help both of you.
9. You can be happy, even if your child is not, but you have to work at it.

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