Dear ICED: I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Dear ICED: I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life

Pam Dillard

LaJolla, California, USA

As I look back on our experience and ask “what would I like to have seen play out differently", it would be the following:

1.  I wish we didn’t have to go through that shock and awe of struggling with what it means that our son had an eating disorder.  When I was reading about the disease initially, pretty much everything I could get my hands on was related to girls and women.  The ED looked so different on our son.   He did not throw any tantrums, he didn’t have melt downs at dinner, there was no food flying in the kitchen.  There was only quiet compliance on the surface while the lies worked craftily to allow his ED to completely take control of him.  

2.  I wish I understood immediately how VITAL the right treatment team is for recovery. 

3.  I wish I understood how helpful medications could be to quiet his anxiety.

4.  I wish teachers and nurses had more of a working knowledge about EDs. 

5.  I wish we didn’t have the constant stress of “will my insurance company” allow another “X” amount of time in treatment?  I was appalled at one point when we were denied coverage for IOP therapy.  At that point in time, we had incurred approximately hundreds of thousands of medical bills for medical treatment.  I was astonished our insurance company could be so short sited about ongoing IOP and further the Medical Director doing the review had no experience with EDs. 

6.  Most importantly, I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life.  Once we understood this, that knowledge truly helped me and my husband sort through the lies and see how severely and savagely this disease attacked our son.

April 10, 2015

Today marks one year since our son was discharged from the Eating Recovery Center in CO.   He has shown so much progress since that day; maintaining a healthy weight, making friends, adjusting to a new school, and has become genuinely a happy kid!  Our lives for the three years prior were filled with chaos, heartbreak, pain, anguish and doubt.  It included doubt that our “new normal” would ever look like anything outside of helping our son survive.  Doubt that the poor decisions made in the process of trying to help him wouldn’t be erased.  Doubt that he would ever make it.  

Our son was diagnosed with an eating disorder when he was 13.  We had noticed some differences in him in the months prior - extreme rigidity about food, wearing multiple layers of clothing, isolating, negative attitude about sports.  We were fortunate that his pediatrician saw the symptoms and immediately referred him to the UCSD Eating Disorders Treatment Center in La Jolla. It was there that we found he had an eating disorder, and also was so depleted he had to be admitted to the hospital  His resting heart rate was in the 20s.  We were shocked.

We had never heard of anorexia affecting men or boys, or that people are genetically predisposed to it.  We also realized during our first hospitalization that not only did I have an aunt who suffered from the disease, but also a male cousin. And the questions about our parenting and whether we could have caught this sooner loomed.  Of course, we could have caught it sooner, we saw the signs, but we didn’t nonetheless.

That was the first of five hospitalizations over the course of 2 1/2 years.  It was during his last hospitalization that we were instructed to have him admitted to a residential facility.  In fact, we were not permitted to even take him home. Our son’s ED had shown so much determination, and manifested itself in so many ways, that the family based treatment we’d been embracing was no longer enough.  My husband and I are forever grateful for that push. 

I’m convinced that even though our journey has been painful, exhausting, and frustrating, we are fortunate on so many levels.  We have the luxury of living within driving distance of a world class eating disorders treatment facility (UCSD); we have a Children’s hospital (Rady Children’s Hospital) with an entire wing dedicated to treating young people with this disease.  We have therapists who have experience with eating disorders, Family based treatment, DBT, and we had people around us who wanted to see our son live.  

Even though those professionals were able to help us help our son, society still does not recognize freely that this insidious disease affects men and boys.  Some of the feedback we heard from people around us included:

“What do you mean, you have an eating disorder?  That’s a girl disease!”  “Are you gay?”

It wasn’t insulting enough that our son was labelled “anorexic”, but somehow his disease drew an immediate conclusion regarding his sexuality!  Our society doesn’t have the experience or knowledge that eating disorders are agnostic regarding the gender of its victims!  It was nonetheless heartbreaking.   And it catapulted us into a period of extreme privacy because of the shame we drew from those reactions.  

There is no shame!  We need to be able to speak about this, educate people, understand the struggles of a male with an ED may look different, but they are just as severe and potentially fatal.

The author is Pamela Dillard,  La Jolla, CA  US, Mom and a Sales Director at an insurance company