Friday, September 5, 2008

Fearless Focus: Anorexia and Complexities of Autism Diagnosis

I encourage other fearless topics not just special needs so I wanted to talk about a disorder that I know about almost as well. It’s Anorexia.

My sister developed the (now well known) eating disorder over 20 years ago (when it wasn’t so well known) and when I was only 16.

She went away to college and came back skinny. Not just skinny, very skinny. My parents were worried and took her to the doctor. Unfortunately, it was only our family pediatrician and he should have had her be seen by a specialist (or a good shrink) but, instead, he laughed it off, telling my parents that it was just the result of a hard-working- perfectionistic-college-student—eat little, work harder; and then he amused them with a story about “the good old days” when he was in college and how this, too, happened to him …

What, Dr. Hazen, “emaciated” is normal?

So she went back to her “anorexic” life and even though I was only 17, I knew that this was not normal and that this girl was in trouble.

Some of my friends would even ask, “Oh my God, Holly, is she anorexic? I felt horrible. But deemed powerless. I would even visit her at school and “see” that she was eating next to nothing; it was also a manipulation game for her: telling me that "we" were the healthy ones and that everyone else had an “over-eating” disorder. And all the while fitting into smaller and smaller clothing—I mean she was shopping in the junior section of Macy’s, no longer fitting into the petite adult stuff.

So the emaciation of my sister—while I watched closely—wasn’t a sight to see, but a tragedy.

Then one day, and perhaps the cry for help, she and I were shopping together and trying on clothes and she came into my fitting room (okay, odd, but we were sisters, so not that odd, right? —well that’s what I was thinking…) and then I saw what she actually looked like underneath her clothes (mind you she would wear layers and wool in the heat of the summer) and what she had become since those lost few years after Dr. Hazen’s visit:


To make a longer story shorter, my sister eventually got the help that she so desperately needed through a renowned Massachusetts psychiatric hospital. And, today, she’s still struggling with her disorder, depression and anxiety—everyday of her life.

She now has two children, but her pregnancies were not comfortable; she had lost so much valuable body fat, that pregnancy was proven painful. But I always think that she was lucky that she could even become pregnant, and twice. So lucky in some ways…

But the problems with having a sister who was no longer emotionally available to me surfaced when my children were diagnosed with autism—and simultaneously, as it were, and that I could barely breathe. I needed my older sister to be there for me: to guide and encourage me with wiser sisterly love. But she was no more emotionally available to me than my own children were. She still needed me to help her with her own needs of encouragement to get through the day. Did she not think that I needed a shoulder to cry on? And that this was not just a simple bump in the road and that I would or could bounce right back from, and then be there for her, once again, as her source of inspiration, encouragement, power. How could I? I was drained!

How could I help illuminate a dimming star when mine forgot how to shine?

So we drifted apart, little by little …and I learned through the years not to expect anything from her—as much as a sister might expect from an older sister—and at the same time, to expect the worst.

More about Anorexia.


Casdok said...

A really touching post. Im glad your sister eventuually got some help, even though she is still struggling today.
Amd am sorry you both have drifted apart.

autismfamily said...

Thanks for sharing about your sister and the seriousness of eating disorders.

My sister is a few years younger than me. In the late 60s she fell on the driveway doing dance steps. That started years of Dr visits which was determined that she was born with a brain tumor. After the third operation she became blind. I am from NJ and she spent a year in a NY Hospital. She was on the same floor as those with feeding disorders. My brother and I would eat a lot of leftover food from patients there.

A few years later my family moved up to Central NJ in the boonies and a girl up the street my brother was friends with in school was the same girl from hospital.

When I was pregnant with matthew and living with their father in Orlando he became bulimic for a few months.

I believe it was because we went from CA to NJ and then down to FL when NIck was 6 weeks old and he knew no one for his drugs and that was his way of staying thin. He did not grasp that this was the reason for his dental issues. He is also paranoid schizophrenic, but not many men in their late 30s develope bulemia. I did not find much help and then left him, went to NJ and dropped him off at airport and 6 months later drove back to CA (after income tax return)