I Get So Frustrated (and Why We Will March)

“I get so frustrated with people sometimes. Not for lack of sympathy or love from the people I’m close to, but just because I know that there is a large part of me that they absolutely will never, ever understand.  I want so badly to be understood by the people I love, to make them understand just how bad it was.  Perhaps I thought that if I looked sick enough, or acted out of control enough, someone would finally get it.  Unable to articulate this madness of spirit inside of me, I tried to manifest it, to become it, even.”

Those words are from my daughter’s journal. She wrote them less than a year after her recovery. She wrote them because there were people in her life who could not, or would not, understand that she had been sick.

When she died in 2009, I began this journey with Moonshadow’s Spirit in order to preserve her memory and her strong desire to help others. What began as a mission to provide financial assistance for sufferers has grown into advocacy.  And now, six years into this journey, I feel her words in my soul. “I get so frustrated with people sometimes.”

I get frustrated when a waitress spots my eating disorder brochures and says that she is overweight and maybe should get an eating disorder herself.  Did she think we were handing out instructions?

I get frustrated when I call into a radio show on mental illness only to have the host ask if eating disorders are on the DSM spectrum.  Did he think eating disorders were a choice?

I get frustrated when popular television shows make jokes about eating disorders.  Are all mental illnesses funny or just this one?

When I tell people about my past cancers, they are immediately sympathetic and supportive.  I cover my scars, but they know the scars exist.  When Jenn talked about her eating disorder, she described this reaction. “I … always become the melodramatic, looks-obsessed, silly little girl who had a phase.  [They say] why can’t I just let it go?  It’s quite simple, really.  There’s no one there to catch it.  No one is there to say, “I believe you.”  No one to say, at the very least, “I know that I do not understand, and so I will stop trying to define your experience in terms of my own foreign vocabulary.” Jenn had scars, too.  And I get frustrated that people refused to see them.

Whenever someone’s child has a serious and maybe life threatening physical illness there will be the heartwarming news stories and social media stories about families and friends holding fundraisers.  And yet I get frustrated because there seems to be no such stories when the child has a mental illness.

I get frustrated as I feel the desperation in Moonshadow’s Spirit applications.  People begging to get well.  Parents begging for their children to get well.  And the heartbreak when we can’t help them all.I get frustrated as I feel the desperation in Moonshadow’s Spirit applications.  People begging to get well.  Parents begging for their children to get well.  And the heartbreak when we can’t help them all.

I get frustrated at the lack of eating disorder training for doctors, nurses, educators, and coaches. I get frustrated when insurance companies use loopholes to deny coverage.  I get frustrated with a media that presents a distorted image of the “perfect” body.

Have you ever had that fear dream? You are frightened and try to scream, but no sound comes from your throat. I recently thought about that dream and wondered if Jenn felt that way. Was she screaming, “I’m sick!” and people refused to hear? Were David and I screaming, “Our daughter is sick!” and people could not hear?

I’m not dreaming now and I have my voice. David and I will use our voices on October 27 and 28, to make it clear. “Jenn, our precious daughter, was sick and she died.”  And we will lobby our legislators for passage of The Anna Westin Act. This law is in memory of a young woman who died from an eating disorder in 2000. It covers three T’s: Treatment, Training, and Truth in Advertising. Passage of this law will be a major step in helping people with this deadly disorder. We will be in Washington, DC to march against eating disorders and to lobby for passage of The Anna Westin Act.

Jenn further wrote, “If you understand, you understand. If you do not, I beg you to humor me.”

As for me and my husband, we are not asking anyone to “humor” us. We are, instead, demanding that eating disorders be recognized for what they are – a mental illness with a 20% mortality rate. They kill indiscriminately and we need to do everything to keep another 23 people from dying every day because of an eating disorder.

I thank God every day for the people in my life who have rallied to help us with Moonshadow’s Spirit.  When I get frustrated I think of them. Without them, I couldn’t do what I do.

Call your US Senator or Representative in the House to support The Anna Westin Act.

We need to all be frustrated and speak for change. For Jenn and many others.