A Face of Mental Illness
Location: Los Angeles, California
Obsessive-Compulsive Disorder, Anxiety, Depression, Eating Disorder (Anorexia Nervosa, Binge Eating, obsessive eating habits)
When were you diagnosed with a mental illness?
I was 16, although I was diagnosed with general anxiety at a younger age after a bout with extreme anxiety and depression. Growing up, I knew something was different about me. I had powerful urges and tics to do strange things- like walking through doors over and over until it "felt right," crossing my eyes every time someone said a word I didn't like, and scrunching my nose until it hurt. I'd randomly get really bad anxiety- this sense of foreboding- and not be able to figure out why. It was incredibly scary and depressing. I also was afraid I was going to commit suicide after I read about it in one of my sister's magazines. I'd lie on the couch, completely paralyzed with fear, and unwilling to go anywhere near the kitchen (which had knives in the drawers).
I'd had my first major ordeal when I was only 9. I was sitting in the backseat of my mother's car, eating goldfish crackers, and upon swallowing a handful, my entire body went numb. A hot, dry feeling flooded me, while ice crept up my neck. Immediately I thought I was choking, and I began to hyperventilate. This happened a few more times that day, and I just remember falling onto the floor while screaming that I couldn't breathe. At home, I lay on the couch and stared at a framed picture of flowers while thinking I was going to die. It was my first real wave of deep, terrifying depression and doom and also the first time I pictured my life actually ending. When he heard, my father knew it had been a panic attack (hyperventilation), as he'd had a few when he was younger. It made little sense though. Where had it come from so suddenly, and why?
The fear of choking stuck, and I slowly began to eat less and less until all I was consuming was cottage cheese, meal replacement shakes, and baby food. I remember one particular day when my family was on vacation. My aunt sat me down after everyone had finished breakfast and declared that I could not leave the table until I finished the last piece of cereal; all I could take was three bites. Everyone knew something was wrong. Everyday, I stood in the bathroom mirror so that I could see myself chew. I'd watch the food go down my throat, as I was terrified that it would get stuck. When it became so severe that my parents had to puree all solid foods until they were liquids, my father dragged my family and me to the Philadelphia Children's Hospital. They recommended a child psychologist- "Dr. K" as I came to call him, who taught me the nature of anxiety and relaxation techniques while we sat and played chess. I got better after a month or so, and my family and I just moved on from it.
It wasn't until after my father passed away, and I left the small school I'd attended for ten years to go to high school, that the real OCD hit hard. I'd asked to see a counselor, because I was having really disturbing and terrifying thoughts. They were so bad that I couldn't leave my room and would lock myself in my closet with a blanket over me to shut out all light and sound, where I'd stay like that for hours and just cry. I would have a terrible thought about myself- that I wanted to kill my mother, that I hated God, that I liked my father sexually. The images that accompanied the ideas were so vivid and realistic; each thought paralyzed me. It was complete torture unlike anything I've ever experienced. I will never, ever forget the pain it brought with it- or the complete terror of myself. Unfortunately, my mother sent me to a church counselor who kept trying to talk to me about my father's death, which made it all worse. I began looking online for answers and stumbled upon "OCD." I immediately self-diagnosed and demanded to see a psychiatrist, who then confirmed my suspicions. After that, it was various medications and years of therapy that did little to help me.
When did you first receive actual help?
What was so frustrating was that I am very progressive and ambitious, so I spent A LOT of time researching. I always felt in my gut what I should do- call it "intuition" or what you will- and never seemed to feel like the "help" I was receiving was right! I'd see counselors who claimed to be certified in treating OCD, but they weren't doing the therapy I'd read about. That therapy is called Cognitive-Behavioral Therapy, or CBT. A huge part of CBT for my particular disorder is called Exposure-Response Prevention, where the patient exposes himself/herself to his/her fears without performing any compulsions (rituals) to reduce anxiety. Yet none of my counselors did this with me! I'd spend sessions talking about my day, or some even talked about their day. So I went to my local bookstore and spent a few hours in the self-help section, reading anything and everything I could find on anxiety. I came across multiple OCD books, but unfortunately, I'd use them to try to convince myself my fears weren't true whenever I was obsessing. The books became a sort of compulsion within themselves.
Then, I had an idea. Wasn't there a place- an institute- I could go that would help jump-start my recovery? I'd heard of "rehab" for various addictions, so was there one for OCD? I went online and researched, and I stumbled across a few. I immediately told my mother that I wanted to go to one- to actual experts who knew what they were doing and could teach me, as I couldn't do it alone! My mother asked my psychiatrist at the time (a horrible, vain woman neither of us liked), and she shot it down. My mother listened to her, which I greatly resented. This was the same psychiatrist who had once made me wait three days before refilling my prescription that had run out (and if anyone has ever been on a high dose of a drug, they will know what hardcore withdrawal feels like...yes, it's absolute hell). Anyway, when I went to college at 18, I knew I couldn't do it anymore. I wanted to do so much in my future, and I knew I'd never reach those things unless I dealt with my illness. So I got a campus therapist I was seeing to recommend me to OCDI- the Obsessive Compulsive Disorder Institute- in Boston, MA. I'd basically already signed myself up and did all the paperwork, and he sent a referral. Then I got a letter that I'd been accepted. It was amazing.
What was that like?
Living in a "mental hospital" is not at all what people think it's like. I don't mean that it's fun or normal- it's far from that! It's actually quite miserable and terrifying to face your worst fears everyday, because OCD recovery therapy is HELL. I mean, imagine your worst fear. Maybe it's being locked inside of a room filled with rats. Or maybe it's being stuck at the bottom of a well. Now imagine doing that...for four hours a day. Yea, that's what we basically did! But I met some amazing, strong, and courageous souls. In fact, there was a 75 year-old man named Joel who was getting help for the first time. It takes a lot of guts to get help and do the work. That just goes to show that you're never too old to face your fears and obtain the life you want. It was incredibly inspiring! But the people there were like those you see everyday- fathers, mothers, sisters, daughters, brothers, husbands, wives, students. We were all at different walks of life, together for a common purpose. But yes, mental health reform is seriously needed. We were treated like sub-humans. In fact, I'm writing a memoir about my stay at OCDI.
What is your worst memory of your OCD?
That's really hard to define; I've had a lot. The scariest times were when I just didn't care about anything anymore- when I wanted to die. I came off medication at the end of 2011, when I was 21. No one tells you what withdrawal is like, and the adjustment is the hardest part. I was flooded with everything the meds had previously numbed, especially depression and anxiety. It overwhelmed me, and I lost my balance. That was pretty terrifying, because there were times I actually feared my own sanity. I was in and out of hospitals, and, one particular evening, I wondered out barely clothed in the middle of the night (it must've been freezing outside) and just sat under the tree staring at absolutely nothing. I cried and cried that I was dying. I really thought I was. Everything in my body hurt. My poor mother drove me to so many doctors. After months of fearing I had every ailment possible, I finally realized it was just my anxiety. Thank god.
But throughout my battle I've had lots of really, really dark moments. Hitting rock bottom became pretty normal. But I think when I thought of killing myself and dying, it really scared me. I became incredibly angry and bitter all the time. I hated everything. And there were other times when I was just terrified of being around my family and friends because of the sexual and violent thoughts I had towards them. The guilt and disgust I felt towards myself was triggered by their presence, so it became unbearable. I avoided everyone, and it destroyed my relationships with them...which was so painful. I developed an eating disorder and, at 5'10" weighed about 110-115 pounds. I didn't want to eat. I didn't want to be well, because I wasn't. I hated myself and my body and everything else. I wanted to die. I remember one Christmas Eve, as I lay on the couch, I missed my father so terribly that I really wanted to join him wherever he was. Death was pretty much all I knew at that point.
I think I was 17 when I had a counselor who actually worried I was going to kill myself, so she called the hospital. They then called my house and forced me to come in, where I had to get into a robe and be mentally evaluated all night. That was pretty distressing. I also felt so ashamed standing in front of my mother and family and friends. My instability humiliated me. There were other times too. I was making dinner one night and had a "bad" OCD thought. My scary thoughts were constant, and this particular moment infuriated me since I was so hungry and just wanted to eat! But it ruined my appetite. So I sat at the table fuming then got up and started to smash my head against a wooden cabinet until I was bleeding. I had times when I thought I'd had sex with people and committed incest, molestations etc. Of course, rationally I knew it wasn't true. but that didn't stop me from feeling the fear that it was somehow real. But I guess my scariest moments were with the thoughts, lying on my bed, convinced and horrified that they were true. I cried all the time, especially when they were about my family and father. The pain nearly killed me. Anytime I had a disgusting sexual thought/feeling it was absolutely horrifying and very, very uncomfortable.
There were other things too- like the time I was dating my ex boyfriend. I was at his apartment after having just gained about fifteen-twenty pounds. I looked so much healthier, but at the time, it overwhelmed me. I thought I looked awful. I remember showering and after, I stood staring in his bathroom mirror with a self-loathing I've never felt on that level before. I thought about how much and all the ways I hated myself. Before then, maybe one of the worst instances was when I actually believed I was possessed by demons (one of my biggest fears). I just remember how terrifying that night was. I wouldn't go near my Bible. I stopped going into churches after that. It was pretty awful.
What do you have to say about the stigma attached to mental illness?
There's a lot that is wrong with it. Many people think that the "mentally ill" are crazy people that need to be in a mental hospital. They're scared of the concept. What they don't realize is that many, many people suffer from mental illness- everywhere, everyday. In fact, most of us do to a degree at some point in our lives! A mentally ill person isn't necessarily someone locked in a psych ward. We're not stupid, ignorant, or delusional. We are normal. That's probably the biggest misconception- that mental illness isn't normal. But why not? Physical illness is considered normal, yet the mind is so much more sensitive than the body! We aren't weird for being mentally ill; would we call a cancer patient weird? Of course not! I think one of the most infuriating things I was ever told was by a young guy at OCDI. When he met me, he seemed shocked. I asked him what was wrong, and he said, "You're too pretty to have OCD." Maybe he meant it as a compliment, but I didn't see it that way. I saw a stigma that greatly mitigated my reality. It doesn't matter how we look, what jobs we have, where we went to school, how old we are, who we're dating or married to, how much money we have, or where we live. Mental illness has no particular face but many.
We live in an age of social media, where we see others' lives that we want to be our own. But traveling and wearing nice clothes and eating yummy things and looking good aren't what make up the majority of our lives; it's the in-betweens that do. It's the quiet moments with ourselves when we struggle the most and our personal battles with fear, identity, work and relationships. All of these things affect us mentally. In fact, I can't remember a single time in my life when I felt physically exhausted without some sort of mental affect- be it stress, depression, anxiety, or all three. We need to learn to stop viewing mental illness as an oddity and realize it's a very REAL reality...for all of us.
How do you hope to change that?
I started this blog- Mind Your Voice- when I moved to California back in November. However, I had so much going on that I pushed it to the back burner at the time. Now, I'm hoping to move forward with it. Working in the mental health field is something I hope to do for the rest of my life. Next up- a Los Angeles series that keeps the key concepts in mind! We are too accustomed to keeping our mental struggles to ourselves. The fear of how we will be perceived if we share often keeps us from talking to others. It's been amazing and wonderful how sharing my battle with others has opened up conversations and real, meaningful connections. It's created deeper love. I value human interactions so much more now that I am older. Hopefully someday soon I can travel and reach out to even more people!