by Paula | Sep 29, 2016 | Anorexia sucks, Our ED Story
I am in Chicago for the annual NEDA conference, and am a little tipsy from the wine at the kick-off dinner as I write this. MONICA SELES IS HERE!!! I will try to be first in line for ‘breakfast with Monica’ tomorrow to buy her book about her experiences living with an eating disorder and to hear her speak. Perhaps I will bring her a copy of my Blog Entry (see http://paula-ponders.com/monica-seles-speaks-out-against-eds/ ) about her, as well as a tennis ball for her to sign (I happened to have one in my car – go figure!)
Aside from meeting tennis icons; the thing I love most about the NEDA conference is hearing people’s stories. Tonight I enjoyed a class of wine with a table of parents, and then went to dinner, where I sat with a group of dedicated young women who are all professionally involved in fighting eating disorders one way or another.
First were the moms… they break my heart. We shared our stories and our heartache. It’s a unique kind of suffering to watch your child self-destruct despite all your love and support. The moms (and dads) at THIS conference understand that all too well. I heard about: the 22 year old bi-polar and anorexic daughter who won’t take her meds or go to her counseling appointments; the insurance company who won’t pay for much-needed treatment; the child who committed suicide in the hospital while a nurse stepped away from her station. So very sad.
Often, parents feel a sense of isolation, guilt and shame; compounding their sense of helplessness and despair. We come together to console, commiserate and support. We understand and we care. It is not enough, but it is something.
Then… a walk down Wacker Avenue, past the Trump Tower (I will try to refrain from political commentary) to Chuck’s restaurant. I ended up at a table of young, attractive and vibrant women. One is an athletic director and coach in Portland Oregon – she strives to promote healthy body image among her student athletes–which can be challenging in a co-ed sport requiring swimsuits. She advises that one of the challenges with girl athletes is that they need ‘permission’ to be aggressive. The challenge with boys is that they need to manage their aggressive tendancies. Interesting.
Many of the young women work for non-profits: one manages an on-line community to support those suffering from eating disorders as a positive and constructive alternative to the disgusting ‘pro-ana’ sites on the web. A couple other women are lobbyists that promote legislation to support funding and coverage for mental health issues. Another is a program director for an eating disorder treatment center. Wow – that is a lot of inspiring commitment!
I hope they all vote.
by Paula | Sep 7, 2016 | Anorexia sucks, Uncategorized
Readers of this blog know that I coordinate an annual NEDA Walk in my hometown of Madison, WI to raise funds and awareness in the fight against eating disorders. As such– I am the contact person listed on the website.
Recently I receive an email that stopped me in my tracks — it was from a relative of a young woman from our community that recently passed away from complications of her eating disorder–after struggling for many years. The relative requested materials about our walk to solicit donations in memory of their loved one.
When I received the email I was at an outdoor music festival, surrounded by music and the hum of a very vibrant crowd–including many friends. It was surreal–I sadly reflected on this woman’s tragic passing, while simultaneously being bombarded by the sights and sounds of a lively festival.
After a follow-up phone call to the relative to offer condolences and to arrange a meeting–I wandered the festival in a bit of a daze. I was (and am) awed by the family’s courage to use their personal tragedy to help others, while feeling an obligation (and privilege) to make this walk a special and meaningful event.
This loss has served to underscore the high stakes of the fight against eating disorders: what we do is important, and our walk does make a difference — to this young woman’s family as well as the hundreds, if not thousands, of other sufferers and their family’s in our community. We are providing an important rallying point to demonstrate support and compassion; advocacy and awareness at a time that our community is reeling from this recent loss.
I watch contributions to the walk increase with mixed emotions–knowing that the current uptick is driven by loss. Yet, what better way to honor her memory?
We will be incorporating a moment of silence for three young women who lost their battles during our walk. It will be somber, it will be sad. These losses remind us that the stakes are high.
The war against eating disorders needs warriors of all types. I fight with a blog and a clipboard (with a large dose of tenacity thrown in for good measure). Others fight by providing treatment to individuals and their families; or through lobbying, or through research, or through writing, or by sharing their recovery stories, or through organizations such as NEDA (National Eating Disorder Association. Others fight by donating to events, such as our walk.
I understand there are many good causes ‘out there’. People tend to participate and get involved in causes that are close to their own hearts. Dear reader – I hope you have a cause that you are passionate about, something that is bigger than yourself. Giving of ourselves keeps us human, keeps us humble and enriches our souls.
by Paula | Sep 4, 2016 | Anorexia sucks
This post is in response to Dr. Zorba Paster’s recent column in the WSJ It is possible to be too thin. This is the email I just sent:
I have serious concerns about the impact of Sunday’s column to those who may be suffering from an eating disorder and anyone struggling with body-image issues.
I am a mom of a daughter who is in recovery from severe anorexia, and am the coordinator of the annual Madison NEDA Walk to raise funds and awareness in our community in the fight against eating disorders.
Eating disorders afflict thousands in our community: The problem is serious and it is pervasive. We have lost at least three young people from our community to eating disorders this year – including one young woman in late August: Chelsea Stahlke; Unfortunately, Sunday’s column perpetuates a culture that results in even more suffering--which I am sure was NOT the intent.
Based on the title of the column, I was excited to see the issue being addressed. However, after reading it, I was disappointed and appalled on two fronts: 1) the examples of how to interpret BMI were male-oriented without any reference to impacts on women’s health and body image and: 2) the perpetuation of the harmful concept that BMI is a reliable measure of health.
The acceptable exceptions given for having a ‘high’ BMI were entirely male-oriented: citing muscular ‘guys’, soccer players, body builders and football players–along with a reference to Wisconsin ‘boys’; without acknowledging that women with ‘high’ scores can also be muscular and active, versus obese and unhealthy. Statistically, women are more likely than men to suffer from body image issues and fat-shaming.
I cannot overstate the damage caused by our national obsession with BMI scores. BMI alone is absolutely not a good indicator of health; yet, ironically, it is frequently used to turn individuals away from life-saving treatment for a serious eating disorder, if their BMI is not below the threshold set by their insurance carrier. There are many heart-breaking cases where individuals who were very sick had to get even sicker before they could receive treatment. Talk about a Catch-22?
Our national obsession with thinness is only exacerbated by focusing on this single metric, to the point that young girls and boys that do not meet the one-size-fits-all threshold are shamed and labeled. Below is an excerpt from the National Eating Disorder Association blog on the topic:
“The BMI and other such indicators are notoriously inadequate measures of an individual’s overall health and fitness. As such, the controversy over the practice of schools sending home so-called ‘fat letters’ to parents is well-founded in a concern that these reports are misleading (at best) and dangerous (at worst). Yet schools in at least 19 states are required to screen kids for obesity and report BMI scores to parents.
The danger here lies in that fact that these reports send confusing messages to parents and children about weight, which may inadvertently serve to promote unhealthy attitudes and behaviors about size and open the doors for eating disorders in an age-group that is already at risk.”
I would appreciate the opportunity to speak with Dr. Paster, on the issue. I am confident that he has the best of intentions to improve the health of everyone: including those who are being harmed by the pervasive use of BMI measures.
I also encourage Dr. Paster to consider supporting the 2016 Madison NEDA Walk. Our purpose is to raise funds and awareness in the fight against eating disorders.
by Paula | Jun 12, 2016 | Anorexia sucks, Our ED Story
It occurs to me that I am in a club that I didn’t sign up for. There are clubs for parents of multiples, there are clubs for parents of children with Downs Syndrom; there should be a club for parents of children with mental illnesses. It is reminiscent of the story Welcome to Holland; wherein the mother plans a trip to Italy, but wakes up to find herself in Holland — their new baby has a disability and the ‘planned’ itinerary to go to Italy has been altered significantly, she finds herself in Holland – living a different kind of life than she expected.
In my upper-middle-class community we have clear expectations for our young people as they launch into the world. High school with honors is to be followed by college with honors (or at least without dishonor); they are expected to successfully navigate through the complex social jungle that is high school (preferably enjoying every minute of these ‘salad days with a group of popular and attractive friends); followed by navigating the temptations and choices offered by a college setting; usually while living away from the watchful eye of their parents for the first time.
In truth, neither I or any of my kids followed this ‘golden’ path. With apologies to my children: they inherited a number of characteristics from my side of the family: This includes the shortness gene, a geek gene, and a varied dose of whatever gene contributes to depression.
Readers of this blog know that my youngest child, Guzzy, is in recovery from a serious eating disorder. The path behind her is rocky, and the path in front of her is hazy. Last night I spoke with a woman who lost a daughter to her eating disorder at an event they were sponsoring to raise funds in their daughter’s memory. As I hugged her tightly, I thanked her for doing this. Her repy was “what else can I do? crawl into a hole?.”
As a parent, we go on– while supporting our children (or honoring their memory) as best we can. Friends who have not gone down this path do not know what it is like, and do not understand–through no fault of their own: It’s akin to explaining what it’s like to be a parent to someone who has never spent time with a child.
Personally, I struggle with how to answer the question: “How is Guzzy”? I generally say “Fine, she’s doing Fine”. What else can I Say? Perhaps I could offer that she is swimming somewhere between Italy and Holland and I am yelling advice and support from the shore–advice that is most often blown away with the wind.
by Paula | May 7, 2016 | Anorexia sucks
This was recently posted by the Academy for Eating Disorders–based on decades of experience treating eating disorders. It directly rebuffs some of the most common myths and mis-perceptions about eating disorders. I offer it here, along with my own personal commentary (prefixed by ‘PP’); if you only have time to read one of these – read the last one, its SOOO important! And when you are done reading, sign up for the NEDA walk closest to you.
- Many people with eating disorders look healthy, yet may be extremely ill. PP: The misconception that you have to look like a skeleton to have a eating disorder can make it more difficult for sufferer’s to seek out treatment — many are told ‘ they don’t look like they have an eating disorder’; when they try to get help.
- Families are not to blame and can be the patients’ and providers best allies in treatment. PP: Unfortunately, there is still a cultural propensity to blame the parents (often the mother) when a young person is diagnosed. In reality – Moms and dads are usually their child’s strongest advocate against the eating disorders. They need support… in the same way a parent dealing with the serious illness of their child needs support.
- An eating disorder diagnosis is a health crisis that disrupts personal and family functioning. PP: Boy Howdy; they aren’t kidding. If anyone in your family has been diagnosed with a serious illness, such as cancer… you can relate.
- Eating Disorders are not choices, but serious biologically influenced illnesses. PP: Telling a sufferer to ‘get over it and just eat normally! ‘can be the equivalent of demanding that I do the splits. It isn’t that I don’t want to… but I am unable to. Hollering and demanding that the behavior change is likely only to make the sufferer feel worse about their inability to meet your demands; deepening their anxiety.
- Eating Disorders affect people of all genders, ages, races, ethnicities, body shapes, weights, sexual orientation and socioeconomic statuses. PP: Unfortunately many, many sufferers will not seek treatment because they don’t think EDs affect someone like them; OR they may encounter serious obstacles when seeking treatment such as: providers who don’t take them seriously (because they don’t fit the stereotype of someone with an ED): lack of available treatment in their area and/or; lack of affordable treatment.
- Eating Disorders carry an increased risk for both suicide and medical complications. PP: Have I mentioned that eating disorders SUCK?
- Genes and environment play important roles in the development of Eating Disorders.
- Genes alone do not predict who will develop eating disorders. PP: This seems a bit redundant with #7… but OK.
- Full recovery IS POSSIBLE!!! Early detection and intervention are important. PP: There is HOPE; there is life after ED!
by Paula | Apr 3, 2016 | Anorexia sucks, Family, Our ED Story
I had started this blog with a story to tell: the story of our family’s experiences stemming from my daughter’s serious eating disorder. The story started almost three years ago with the shocking realization that Guzzy was critically ill with a diagnoses of severe anorexia, which led to multiple hospitalizations; failed treatments; days of desperation; long weeks and months of re-feeding; the slow climb to weight restoration; the even slower climb to brain function restoration; and of her gradual reclamation of life.
Now; our paths are diverging–as mother/daughter stories must do. Guzzy is a young woman now: making more of her own choices; dealing with the stresses of life, relationships, jobs, etc. and she is taking ownership of her remaining recovery journey. For her — that is part of growing up. For me — it is part of letting go.
It isn’t easy: She lives with us, and as I have told her: a large part of the ‘mom’ job description is to worry; a tendency that is heightened by her history. We are navigating the seas of her increased independence together.
