Dying to Be Me: Sarah Y’s Story
296.3 Major Depressive Disorder (Recurrent). 300.3 Obsessive Compulsive Disorder. 300.02 Generalized Anxiety Disorder. 307.1 Anorexia Nervosa. 300.4 Dysthymic Disorder. 307.5 Eating Disorder Not Otherwise Specified. 309.81 Post-Traumatic Stress Disorder.
Age 27. I spent much of my first-ever therapy sessions “instructing” the therapist what she may or may not write on my chart, “proving” that I may have “some issues” but definitely not clinically diagnosed diseases. “Do not put me down as anorexic or depressed. I am not. I know the criteria in DSM IV (Diagnostic and Statistic Manual of Mental Disorders, Fourth Edition) and I do not meet them. I’m a little confused, a little sad, and I don’t want to be fat – but that’s normal. I am not crazy. What are you putting on my chart? I don’t want anything on my record!” My primary concern was not getting better – of course, if you are not sick in the first place, you don’t have anything to get better from.
My eating disorder symptoms started when I was 14, a year after my family moved from Hong Kong to the U.S. As an eager-to-please child living under high expectations, I took perfectionism to the extreme. I felt like I had to be good – preferably the best – at whatever I did. The message I internalized was “Be the best! Must not fail!”
I remember always having a huge fear of going crazy and/or being fat. Growing up, I only knew one person with a mental illness. One of my aunts had some sort of schizoid disease. The family didn’t talk about it. By the time I was born, my aunt had been medicated for years and I never experienced her hallucinations and delusions firsthand. But I knew “something was wrong” with her. She was “weird” and was obese. She was many other things, but those two stood out for me.
I don’t know how much my fears were related to my aunt; the media and our culture certainly didn’t help. I irrationally believed that if I went crazy, I’d be fat, too; so if I didn’t get fat, then I can’t be crazy. Either way, my conclusion was that I definitely did not want to be crazy or fat. My aunt was yelled at, shamed, ignored, made fun of and pitied, all of which, even as a young child, I knew I didn’t want to experience. I don’t know when, but I think I subconsciously determined early on that I would never allow myself to be crazy or fat. That just wouldn’t happen – not to me – as if those were things I could actually control.
It was a very difficult transition to American middle school. I felt lost, lonely and out of control. In addition to the usual teenage turmoil, everything I knew became ambiguous as my two cultures clashed. I wasn’t sure what I was supposed to do, how I felt, and ultimately who I was. I was having an identity crisis. I didn’t belong. I didn’t fit in. I spoke with an accent. I looked different. The wish to be happier, more popular, more in-control morphed into a relentless focus to be better and thinner. My belief that I could handle it myself, while trying to cope with confusing and painful emotions, ignited a destructive war within me.
The frequency and severity of my eating disorder behaviors fluctuated throughout the next 14 years. It would subside for month or years, and then peak again, particularly during transitions. For a long time, I got by under the radar. Undiagnosed. Untreated. Unlabeled. The worse the eating disorder got, the more strongly I tried to evade detection and treatment – not a surprise since denial is a prominent feature of eating disorders, making the disease even more lethal.
It is scary how easy it is for people, even those close to you, not to realize something is very wrong when you “look normal” and “are doing well.” After all, how bad can things be for a 27-year-old with two Ivy League degrees, a nice condo, a fancy car, a promising career, and a seemingly good relationship, right? Aren’t people with serious mental illnesses unemployed and living on the street? She has it all – she is just stressed. While some people were dying to be me, I was dying – literally. And, dangerously, I didn’t mind.
Some say you need to hit rock bottom before you are forced to change – I supposed that is true in my case. The bottom led to a four-and-a-half month inpatient treatment at the Renfrew Center, where my journey of recovery began.
Recovery is such a strange process – it’s not intuitive, especially when I was fighting against myself. The “getting better” part just couldn’t happen when I refused to accept that there was something to get better from! At first, I fought the diagnoses and was ambivalent about recovery. In my mind, those labels described “really crazy people” who obviously were not me. I’m not them! I wanted to be far, far away from the stigma and judgment I associated with having a mental illness. I wasn’t sick. Besides, nobody around me had mental diseases. Nobody talked about it and everyone seems normal. What would people think? Will I still get promoted at work? Who is ever going to date me? Will my parents think I’m a failure? I was terrified that if labels were written next to my name, the diseases would become me.
Letting go and being willing to be diagnosed and treated freed me from the fear of being labeled. Learning to accept who I genuinely was, the good and bad, was critical in letting me just be. I never found out what exactly was written on my charts. Gradually, the details didn’t matter. I learned to treat them as just words and categories – like numbers on a scale. They do not define me.
With nearly five years in recovery, I now have a life I enjoy. And I enjoy living – despite and along with the long list of mental diseases I had or have. It’s not easy. I sometimes wish I didn’t have to deal with them or that there would be a “quick fix.” But I have learned to accept and continue to get the treatment I need to maintain my health. I have learned to love my body, accept and integrate the diverse pieces of my life, and continue to discover and value my worth.
I have learned that I am not alone and there is a supportive community available to help. Now, it is important for me to help raise awareness about and increase treatment access to eating disorders and mental illness. I want to help fight the secrecy, shame and stigma that perpetuate myths and deter people, including me, from getting help. I have learned that recovery and living well with mental illness is possible. And I have learned that, even when it may not seem like it, there is always hope.