EDAW 2015: The Invisible Eating Disorder

I’m very grateful to a client of mine who agreed to write this post for Eating Disorders Awareness Week. Since this week is all about generating greater understanding and myth busting, I felt that my client’s perspective and story was incredibly important to share. It’s important because what she has to say is profound and also reflective of how most people live in their eating disorders. While many people believe that an eating disorder is something that is clearly visible, the truth is that most eating disorders are not outwardly obvious. If you came to my office and watched the myriad of clients who come and go, you would see a variety of ages, races, genders, shapes, and sizes. Please take the time to read what it is like for so many sufferers to feel invisible in their illness.

There were years when my eating disorder was very visible. My eyes were wide and hollow, my lips were chapped, my weight was low, my skin was pale.  At the time, I was constantly either being recommended for a higher level or care or actually in a residential treatment center or hospital.  The people in my life knew I was sick.  They were mindful of saying things that might trigger me (even though they still managed a few gems) and continually expressed their care and concern. 

Fast forward to 2015.  After a final bout of residential treatment in 2010, I am in a stronger place, certainly, in my recovery.  Pregnancy, although a tenuous time, solidified my commitment to living in a way in which my behaviors are aligned to my values.  After I had my beautiful son in 2013, a glow returned to my skin.  A light returned to my eyes.  I smiled again.  I felt joy.  And I gained weight.  Is it painful?  Yes.  Would I do it again?  Absolutely.

I had my eating disorder for 15 years.  I’ve been at a healthy, average weight for about 2 years.  And in those two years, my eating disorder has become invisible.  To friends and family, I am recovered.  To them, it seems, recovery is a magical process in which all suffering, mental and physical, is erased with a healthy weight and outwardly “normal” eating habits.  It is like those fifteen years of my life never existed. 

In some ways it is a relief to be seen, once again, as the person who has it all together.  But then, wasn’t that what led to the development of the eating disorder in the first place? It’s confusing to be seen as someone who is so strong when the vulnerabilities that led to the eating disorder are still there and are still being addressed in outpatient treatment.

A family member of mine often asks me, “Why do you still see those people,” meaning my therapist and nutritionist.  If I were to be honest, I would say that the underlying issues still remain, despite being at a normal weight.  My intense need for acceptance, my low sense of self-worth, my shame around food and my body, my issues of grief, loss, and abandonment, and all of the other myriad factors contributing to my anorexia still remain despite the fact that I eat and that I appear healthy.  But instead, I just say, “Because they help.” 

I wonder about being honest with my family and friends about where I am in my recovery.  What holds me back?  I am afraid that they won’t believe that I am still suffering, because I don’t feel like I deserve to suffer if my outside doesn’t match my inside.  I worry that my words won’t be enough.  I worry that if I said how much I am hurting inside, I would let people down.  I worry that I am not worthy of care or even of treatment because I’m so much “better” than I used to be. 

One thing I am learning in recovery is that I don’t have to share my story, my most vulnerable self, with the world. I don’t have to wear my pain like armor. I can use my words to express my pain to those few I can trust with my most authentic self. It took a long time for me to be able to put words to my experience, and I am learning that those words are precious. In many ways, it is much easier for me to use my body to express that I have a need; a need to be cared for, loved, accepted, valued, treasured. Using my words is much harder, but in the end, a far more effective way of communicating.