by Paula | Aug 19, 2015 | Anorexia sucks, Our ED Story
Yesterday I received a text from my husband asking why there were 6 large cartons on our front stoop. A quick call confirmed that these are the National Eating Disorder Association tote bags that we will be filling with goodies and giving away at the Madison NEDA Walk. In addition to 6 cartons of tote bags, I am also struggling to stash away the many in-kind donations and prizes we have received. My closets are bulging (a good problem to have).
I received the ‘tote text’ just as I was arriving at the home of one of the walk committee members for an in-person planning session with the whole team. With everyone’s busy lives, we have struggled to meet in person, so it was great that almost all of us (5 out of 6) were able to be there in person; the room buzzed with the resultant energy (although the lightening storm outside may have also contributed). This group has enough ideas and energy for 6 walks!
With the walk only a month away, we are now pulling out all the stops to promote the walk, align volunteers and finalize logistics. The teamwork is great, and it is gratifying to see the walker count and donations steadily creeping up and up. It feels really good to be doing something tangible in the fight against eating disorders. We are going to line the NEDA Walk route with Eating Disorder related facts–which help keep us all focused on WHY we are doing this. Here is a sampling:
- In the US, 20 million women and 10 million men suffer from a clinically significant eating disorder at some time in their life.
- 40-60% of ELEMENTARY school girls aged 6-12 are concerned about their weight or about becoming too fat.
- Anorexia Nervosa has the highest premature mortality rate of any psychiatric disorder. (that’s the one that sends shivers up and down MY spine)
- Eating Disorders affect over 30 million people, but only receive $28 million in government funding for research. In contrast, Alzheimer’s affects 5.1 million people and receives $450 million.
- The average American woman is 5’4″ tall and weighs 165 pounds. The average Miss America winner is 5’7″ and weighs 121 pounds. Fashion models are thinner than 98% of American women.
- 95% of all dieters will regain their lost weight in 1-5 years.
- Eating Disorders don’t discriminate. They affect Whites, Hispanics, African Americans, and Asians at similar rates.
- The treatment costs of an eating disorder in the US ranges from $500 to $2,000 a day.
- Dieting and body dissatisfaction are among the greatest risk factors for the development of an eating disorder.
Another local fact, is that there are very limited treatment options in our own community — most families need to go to Milwaukee or Minneapolis for treatment. That is a real hardship for families as well as a barrier for treatment.
Even as I continue to promote the walk and get tangled up in the details of planning this event; it is important to keep focused on WHY we walk. It is our personal experiences with eating disorders that motivate many of us. In my case, I started walking for Guzzy, but I continue forward on behalf of everyone’s sons and daughters. How can I not?
by Paula | May 16, 2015 | Anorexia sucks
Fact or Crap is the name of an actual game (not sure by who – and I’m too lazy to go downstairs and look) The game has cards with declarative statements; and the players ‘vote’ on whether the statement is fact or crap. Welcome to my ED version of Fact or Crap!
First the quiz… then scroll down for the answers and my completely subjective assessment of the results.
FACT or CRAP
1. Anorexia has the highest fatality rate of any mental illness.
2. Eating disorders affect people of all genders, age, and race.
3. In most cases, families are to blame when a child has an eating disorder.
4. There are proven treatments for ED, that if followed carefully, and with the guidance of appropriate providers, can cure any ED patient.
5. The media causes anorexia.
6. You can tell if someone has an eating disorder by looking at them.
7. Recovery is possible.
8. Dieting usually does more harm than good and is a common gateway for eating disorders.
9. Most health insurance covers ED treatment with a minimum of hassle.
10. YOU can help.
Answer Key
1. Anorexia has the highest fatality rate of any mental illness. FACT: the precise percentage varies on which study you read: but approximately 15% of those diagnosed with anorexia will die of either medical complications or suicide. (Yet, research and prevention remains grossly underfunded when compared to other mental illnesses).
2. Eating disorders affect people of all genders, age, race, weight and body size. FACT: You simply cannot tell if someone has an eating disorder by looking at them.
3. In most cases, families are to blame when a child has an eating disorder. CRAP: In fact, families are usually the patients’ best allies in treatment.
4. There are proven treatments for ED, that if followed carefully, and with the guidance of appropriate providers, can cure any ED patient. CRAP: While there are excellent treatment facilities and providers, and many patients DO recover: each case is unique and there are no guarantees of success, even if the treatment providers and family members do everything ‘right’.
5. The media causes anorexia. CRAP. The meda certainly CONTRIBUTES to the prevelance of eating disorders; but it is not solely responsible for causing a serious eating disorder; nor does everyone exposed to the same images develop an eating disorder. Having said that, I am the FIRST in line to rally against the impossible standards of beauty and THINNESS that is imposed on all of us.
6. You can tell if someone has an eating disorder by looking at them. CRAP: There are many people with eating disorders, including anorexia, that appear healthy outwardly. It is common for an ED patient to have a normal or even above-normal weight, but their body can be malnourished due to the damage caused by restriction and/or purging.
7. Recovery is possible. FACT! In addition to participating in and seeing my own daughter’s recovery, I have talked to many former sufferers who shared that they never thought they could get better… but they did. While recovery is not guaranteed – its is possible!!
8. Dieting usually does more harm than good and is a common gateway for eating disorders. FACT: There have been many studies that demonstrate that dieting is very rarely effective for a sustained weight lost. Dieting should be discouraged – especially for young girls and teens.
9. Most health insurance covers ED treatment with a minimum of hassle. CRAP: Unfortunately, many carriers don’t cover residential treatment in particular; and will push back unless (or rather, until) there is a MEDICAL emergency. Finding appropriate treatments is often a significant financial burden on the impacted families.
10. YOU can help. FACT!!! Read my blog, go to the NEDA site. And WALK and/or contribute to a NEDA walk. We need you! NEDA Walk
Results (aka your role in my fictional ED band)
9-10 correct: you are an ED rockstar!
6-8 correct: On the right track to achieving rockstar status. Maybe you are a backup singer, or a bass player.
4-5 correct: Kinda lame, but there is hope. Maybe a groupie? or a drum player?
1-3 correct: Definitely Lame. You have no rhythm. Remedial reading is needed. You should definitely read: the recent NEDA Blog: ED Truths
by Paula | Mar 1, 2015 | Anorexia sucks
This is an epilogue to my ‘woman on the treadmill’ post. There is a young woman who I have seen several times at our local fitness club, who is noticeably and significantly underweight. I see her there every time I go to the club. She is on the treadmill when I arrive, and is still going when I leave – sometimes two hours later. I suspect she works out for hours a day. And to allay any misconceptions about my own activity level: I’m usually there to play pickleball with old people. It can be intense, but is only mildly aerobic.
Sufferers in the grip of a severe eating disorder can be driven to obsessively exercise. This is ED at its most insidious — compelling its sufferers to become ever-more committed to their illness. When she was at her sickest, Guzzy could not sit still. She would compulsively rapidly bounce and jiggle her legs whenever she had to sit–the whole couch would shake.
I have also pondered the liability to the health club itself, if they have members who are inflicting harm on themselves by excessive exercise, what is their responsibility? When I signed up (with my ‘older adult’ discount); I had to fill out a form assuring them that I was healthy enough to exercise and absolving them of any liability if I wasn’t truthful. But, what if the health club has a legitimate reason to believe a patron is NOT healthy enough to exercise or that exercise could be detrimental to an individual’s health? Do they have an obligation to Act? What obligation do any of us have to act when someone we don’t really know is exhibiting self-destructive behavior?
Which leads me back to my own dilema: What to do or say to the stranger on the treadmill? I am a mid-westerner and we don’t like to intrude or be rude. We mind our own beeswax. But… I believe we need to at least TRY to help if we see someone who is in need (even if they don’t realize it); so I have reached out to her. While I realize the odds of my intervention making a difference is small, the odds are (ever so slightly) greater than zero; and I sleep better at night.
by Paula | Feb 17, 2015 | Anorexia sucks, Our ED Story
Next week is National Eating Disorder Awareness week. From the This year’s NEDA Awareness Week campaign, “I Had No Idea…” aims to promote public and media attention to the seriousness of eating disorders and improve education about the biological underpinnings, environmental triggers, warning signs and how to help those struggling.
Two years ago I HAD NO IDEA that eating disorders afflicted approximately 30 million men and women in the USA, or that Anorexia has the highest mortality rate of ANY mental illness. I HAD NO IDEA regarding the pervasiveness and severity of the problem.
Two years ago I HAD NO IDEA that my own daughter would be afflicted with severe anorexia. I HAD NO IDEA this could happen in good, loving families and was initially stunned and in denial.
Two years ago, I HAD NO IDEA what eating disorders (EDs) were all about — what causes them and how to treat them. I have since learned more about the many variables that can contribute to an Eating disorder and learned more about prevention and treatment. Unfortunately, there is no one-size-fits-all cure.
Two years ago I HAD NO IDEA how strong or brave my daughter was. I am in awe of her. Ultimately, she owns her own recovery.
Two years ago I HAD NO IDEA how strong I would be when my child was in the grip of a severe mental illness. I HAD NO IDEA that I would become an advocate for eating disorder awareness.
We can all make a difference within our own circle of influence. Reach out to someone who you think may be suffering and start a conversation — who knows what ideas may result.
by Paula | Oct 8, 2014 | Anorexia sucks, Our ED Story
When my daughter, Guzzy, was first diagnosed with Anorexia Nervosa, I had a hard time comprehending the diagnosis. I was in denial and initially believed her when Guzzy very persuasively made the case that she wasn’t really sick, she was fine and everyone was over-reacting; she would eat a bit more over the summer and all would be well. At the time, I believed her, but I now realize that it was ED speaking, not wanting to alert me to the tight grip it had on my daughter.
I went through a whole gamut of emotions, fear, denial and irrational rationalizations: How could this be happening to US? Surely, she was too thin, but a label of anorexia seemed overly dramatic and sensational. How could my daughter be sick when she was doing well in school? How could she be too sick to prevent her from going on her beloved summer choir trip? And then there is this: admitting she was sick was an admission that I had failed as a mom, that I had not taken heed or action soon enough when my own daughter was wasting away before my eyes.
That was before; when I knew next to nothing about Eating Disorders. That was before I educated myself by devouring a variety of books, blogs and anything I could my hands-on. That was before we commenced on a journey of hospitalizations, therapies and meal plans. That was before I found my lifeline: an online forum of other parents FEAST .
That was before I started talking about my experiences to people in my own life and found that most people are only 1 or 2 degrees of separation away from someone who has suffered from a significant eating disorder. As a parent, I have become less afraid of sharing my experiences; as I no longer fear the judgement of others or of myself. Guzzy has also become more confident with sharing her story, due to the resultant outpouring of support and shared experience stories from others.
That was before I read the fabulous book: Help Your Teenager Beat an Eating Disorder by Lock and LeGrange. They devote an entire chapter to ‘Don’t Ask Why’. Boy, did I need to hear that! It turns out there is no smoking gun; no single cause or reason that causes eating disorders, and there are many theories regarding genetics as well as a wide-range of triggering environmental factors. Parents do not cause eating disorders, however parents are almost always critical to their child’s recovery.
Now that our own crisis has abated, I want to leverage some of of my hard-won knowledge and energy as an advocate for greater awareness and community Outreach. I’m not entirely certain what form that will take yet, so stay tuned!
