By Alexa Ellenthal
My whole life it has been apparent that I am different. Some would even say that something is wrong with me.
I was a weird kid (I was highly precocious and inquisitive to the point that it was obnoxious) and my parents started taking me to a variety of specialists, mostly psychologists, and getting me tested when I was about six. At first the diagnosis was ADHD. The doctors and my parents started medicating me for it. Then they realized I had a mood disorder, too, and put me on pills for that. I remember my near-daily tantrums in first grade. I remember feeling like a zombie for most of second grade. All through elementary school they were putting me on different medication cocktails, taking me from doctor to doctor, hoping by some magic the pills would make me a normal kid or one of the doctors would be able to understand me.
When I was nine I had my first major depressive episode. I was being severely bullied and it really got to me. I also developed insomnia. I would stay up late into the night crying, not even being sure why I was so upset. That’s when “mood disorder not otherwise specified” (MDNOS) morphed into depression in my medical records. The problem was that I was feeling impossibly sad and hollow and unmotivated, and because I was so young, I couldn’t always relay what I was experiencing in a way others could understand. That’s the problem – doctors have to try to diagnose patients based on introspective ramblings, symptoms, observations, but they only really know what their patients tell them and even then, they don’t know anything for a fact because patients might lie or omit some key details.
I was a difficult child, and not a particularly trusting one. I didn’t just open up to strangers who were being paid to listen to me and decide how to deal with me. I also didn’t understand why it was so important to talk to them. So they guessed at my condition, putting me on meds that zapped my emotions, or that made me either severely under – or significantly overweight. It was confusing and overwhelming, and by the end of middle school I’d been through at least a dozen doctors and probably just as many medicines. It’s so hard to find not only a good doctor, but also a doctor you click with. Especially as a young child, when most of them condescend to you, and even if you point out to them that you’re young, not stupid, they’ve still got you drawing pie charts of your emotions and playing with miniature Zen gardens.
I had developed severe body image issues due to med-induced weight fluctuations and my self-esteem was frighteningly low due to the bullying I endured daily, as I had been since kindergarten. Elementary school aged children are like lemmings; if one walks off the cliff, the rest follow; and if one picks on the bossy, weird, nerdy girl then the rest do the same. I started reading a lot of books about eating disorders and visiting websites like sixbillionsecrets and learning about self-injury and other such horrors. When high school rolled around, I got really stressed and my own practices of self-injury began. I used thumbtacks and paper clips to hurt myself, and I starved and binged and tried to purge but nothing ever came up. Things got worse.
The real depression hit, though, around late fall of my sophomore year in high school. I was seeing a psychologist whom I liked, but I never let her see how bad of a place I was in. She threw in a couple more diagnoses to my ever-expanding list: Anxiety and obsessive-compulsive disorder (OCD). As a nervous compulsion, I started pinching my skin, leaving ugly, moon-shaped scabs and scars. I started missing a lot of school and trying to lose myself into other worlds and lives, sleeping a lot (for the dreams) and reading a lot of love stories (for the happy endings) and watching a lot of emotional TV shows (to feel something). My grades slipped and so did my façade of happiness. My peers began to notice that something wasn’t right with me, my friends were always asking what was wrong, and my parents, who had been under the impression that I was recovered, started noticing my symptoms.
Then it all started again, with going from doctor to doctor and pill to pill. My parents had me see this one awful woman who I’m quite sure truly hated me and tried to say I was bipolar, called me manipulative, said I was faking and said my mom was stupid for believing me and a bad parent. It was a psychiatric horror story. Going into junior year of high school I was beyond stressed and self-harming pretty badly; my eating habits were totally screwed up and I was positively miserable. I didn’t want to exist. As the holiday season set in, suicide weighed on my mind more and more.
Then, one Friday night in mid-December, I arrived at a friend’s house only to be greeted with the news that a boy I had been friends with two years prior had died. He had killed himself. In the wake of his death there was utter devastation. I saw what a suicide did to a family, to a community, to the friends of the deceased. I chose to live. I didn’t think the world could afford to lose us both. I went to a psychiatric hospital a month later for my depression and self-harm. I kept the eating disorder to myself. The hospital brought in guest speakers – former patients who had recovered and begun living happily, and they had us do a lot of art therapy. We went to the gym every day and sometimes there was animal therapy, where they brought dogs in for us to pet and play with. We also set recovery daily goals and discussed whether or not we were successful at the end of each day. Since being discharged, I’ve been in therapy two to three times per week. I have started dialectical behavioral therapy, which I find immensely helpful. I finally have medications that work for me. I do group therapy, which is awesome.
But then, on the first day of school this year, a sophomore killed himself. I realized that the problem was bigger than me, and bigger than Henry. It is a challenge that so many people face. It is something that so many people suffer through silently. They’re ashamed of their illness due to the stigma that society attaches to being mentally ill, or their family rejects the idea that they could be sick because they perceive that as something being wrong with the person.
According to the National Institute of Mental Health, more than one in four adults suffer from some sort of mental illness. And many people can’t get the help the need and deserve, due to the shame put upon those of us who need this sort of help, as well as the exorbitant cost of mental healthcare. I want to change that. I want people to understand what it’s like to be mentally ill or bullied and I want the people who are suffering to know how far from alone they are. I still want all of that. That’s why I started You Never Know Who, an online community for kids struggling with mental illness. That’s why I’m writing my novel, which is about a 16-year-old girl trying to recover from a major depressive episode while struggling with several other disorders. The main character is based off of not only my own experiences, but also those of the many girls and young women I interviewed about their struggles. I want to educate people about the reality of mental illness. I want the mentally ill to know that there’s nothing wrong with who they are and they aren’t alone. I want people to move on from their struggles the way I’m moving on from mine.
Alexa Ellenthal will be a guest at TEDMED’s Great Challenges Google+ Hangout this Wednesday, December 18 at 2:00 pm EST. Join us to discuss how mental health treatment is being integrated into primary care.