5 Times the Internet Got OCD Wrong — and Why It Matters

301
301
0

PSA: Obsessive compulsive disorder is not an adjective. It’s not about being organized. It’s not about mismatching socks. It’s an actual diagnosis that affects nearly one in 100 people in the United States. Approximately half of those cases are severe.

So why do we keep using “OCD” to describe things like our color-coding obsession? In most cases, it’s because we don’t understand what OCD really is. In one of my favorite pieces about living with OCD, activist and radio news anchor Jeff Bell writes about two behaviors that could be considered “so OCD”: Organizing his closet and compulsively picking up rocks and sticks. Although the first may align with societal ideas of what’s “so OCD” (Exhibit A), for Bell, it’s not. Organizing his closet is something he likes to do. He does it by choice.

Picking up rocks was different. During what he describes as his “worse years,” he couldn’t walk down the street without picking up every rock and twig, afraid that if he didn’t, someone would hurt themselves and it would be his fault.

This is everything — it’s the distinction between someone with an anal personality and someone with a mental illness. And it matters. It matters because for people who are diagnosed with OCD, this misunderstanding demotes something they live with to an everyday quirk. It takes away the meaning of the sentence, “I have OCD.”

Maybe the best way to learn about OCD is to talk about what it’s not. Here are some examples:

1. This headline:

Screen Shot 2015-08-04 at 11.33.59 AM

pencils lined up

Being annoyed or unsettled by pictures of pencils misaligned or something out of place does not mean you have OCD. OCD is defined by experiencing obsessions and compulsions, not being “driven insane” by an image alone. Obsessions are thoughts, images or impulses that occur over and over again. These thoughts are intrusive, unwanted and often lead to the second part of OCD — compulsions. Compulsions are repetitive behaviors or thoughts a person uses to try to make his or her obsessions go away. Like Bell, who compulsively picked up rocks and twigs to reign in the obsessive thought that someone was going to hurt themselves, it’s these compulsions that intrude on a person with OCD’s daily life.

So while someone with OCD could be bothered by seeing something out of place, there’s more to the story. If it’s paired when an intrusive and obsessive thought or action, then you can start talking about your OCD.

2. These tweets:

Using OCD as a synonym for “organized” or “anal” (or as a way to get followers) just shows you don’t know much about the disease.

3. This quiz:  quiz asking how ocd are you? This should have stopped at the first line. The quiz has you rate how much a messy or mismatched imaged “bothers you” on a scale of 1-5. But this has nothing to do with OCD. OCD is not like having a pet peeve.

4. This entire Twitter account.

lucky charms cereal bo with cereal lined up in a square

 

ice cream swirls perfectly aligned

“OCDthings” calls itself a parody account and posts thing that apparently people with OCD would find satisfying. But the reality is, if the entire world was color-coded, alphabetized and never out of place — it would still be hard for someone who has OCD. Making everything aesthetically pleasing is not the cure for OCD.

5. Also this headline:

Screen Shot 2015-08-03 at 4.07.10 PM

Someone does not “become” OCD like a caterpillar becoming a butterfly, or Peter Parker becoming Spider-Man. Someone is “not” OCD, they have OCD, and making this distinction is important. It’s not a character trait and it’s not an identity; it’s a diagnosis.

So step up, Internet. Throwing around diagnoses like adjectives makes it look like you don’t know what you’re talking about. And that bothers me — but not because of my OCD.

RELATED VIDEO: What’s It’s Like to Be in My OCD Mind for 3 Minutes

301
301
0

RELATED VIDEOS

TOPICS
, Listicle,
JOIN THE CONVERSATION

What the Number 3 Means to Me As Someone Living With OCD

127
127
5

At 5 years old I was so good with numbers, I knew how to count by multiples of three before I even learned how to multiply. In fact, I would count objects in threes and always in threes – hotdogs on the table, consonants in my alphabet soup, cute girls on the street, “One, two, three, one, two, three, one, two, three…”

I became so good at it I was able to guess correctly – in one glance – when a group of objects was divisible by three.

I was also a pretty organized kid. I always kept everything, be it my toys or my stash of pencils and Crayolas, arranged in a special order logical only to me. You messed with that order, you messed with me. For the most part, though, everything seemed harmless (and in some cases, such as schoolwork, advantageous) and, despite my penchant for counting everything in sight, I looked as perfectly normal as the next kid.

But I didn’t know my harmless counting game and habits were an early manifestation of my obsessive compulsive disorder.

Around the same time my parents split up, it started getting really bed. I started counting out loud, “One, two, three, one, two, three, one, two, three…” – well, not really out loud, but more like in whispers – barely audible but visible enough to make my eagled-eyed mother think I was under some kind of demonic possession. At 9 years old, it wasn’t cute anymore. 

The thing about OCD is that it thrives on two factors that seem meant for each other: stress and routine. School life is built precisely around these two things. Soon, my disorder was controlling my eating habits (counting nuts during recess only to find out, to my horror, a pack of Growers had 49 nuts on average) or how I positioned myself inside the school bus (third from the door). Throughout everything, I kept it all to myself. I spent the next few years of my adolescent life finding ways to “go under the radar.”

One of my coping strategies was to do the opposite of my natural tendency: To counter stress, I adopted a carefree, happy-go-lucky attitude. To defy order, I developed a talent for chaos and turning things upside down, whether stuff in my room or thoughts in my head. My affinity for numbers (and with it my incessant counting) vanished into thin air and in its place I developed a knack for words.

In my early teens I would still indulge my impulses every now and then, especially when nobody was looking. The impulses ranged from the silly, such as avoiding cracks on the sidewalk, to the practical, such as doing late-night checks to make sure all the doors in our house were locked and the LPG tank in the kitchen was safely secured, before muttering a stutter of a prayer on my way back to my room. I had to do everything the exact same way every day and in the exact same order, or I would do everything all over again, lest some imagined misfortune befell me.

In high school, I was known as the class bottle collector because my locker was always filled with empty bottles of Coke. Classmates who needed a quick buck just went up to my locker to exchange the bottles for deposit at the cafeteria. While the whole class thought I was demonstrating an entrepreneurial streak, I was actually just satisfying an irrational urge to hoard and collect.

I learned not only to hide but also embrace my obsessive compulsive behaviors so long as they didn’t severely disrupt my normal routines. If they did, I would make a conscious effort to overcome the behaviors by following a tried and tested formula: break the routine, start a new one, and then break it again before it got better or worse – steps as simple as one, two, three.

The stigma of living with OCD further diminished throughout my early adulthood, as pop culture brought it to relevance: Jack Nicholson’s obsessive-compulsive Melvin in “As Good as it Gets,” Tony Shalhoub’s “Monk” character, Leonardo Dicaprio’s Howard Hughes in “The Aviator” (and Dicaprio himself). 

As the stigma lessened, so did the symptoms. When I started acknowledging the proverbial “elephant in the room,” through open dialogue with people who were aware and genuinely cared, I also gained better control over my obsessions and compulsions rather than the other way around.

Now, except for the rare occasion I’m late for work (on my way to the office, where I suddenly ask the driver to turn the cab around and drive me all the way back home because I missed reading the roadside billboards in the exact same order I’ve gotten used to every morning), I no longer do most of the habits I used to. Charismatic as I seem on the outside, sometimes I still can’t help but feel like the odd man out on the inside. The good news is, with family and close friends embracing my OCD as a part of me, I do not feel less different – but it has definitely made me less alone.

127
127
5
TOPICS
JOIN THE CONVERSATION

To My Son Whose Path Changed Because of Mental Illness

914
914
2

To my dear Ross,

It hasn’t been an easy road we’ve travelled. You were my precious first son, my golden boy. You seemed to have the world at your feet, and such talented feet they were! Your dad and I have so many proud memories of your childhood: singing solos in school, winning the award for “good citizen,” football awards, tennis, hockey, clarinet solos, excellent exam grades. And through it all you remained the nicest boy. You were funny, kind and polite.

We could see the wonderful life you had stretching ahead: university, a great job, a wife, beautiful children. Your future was all mapped out.

When we found out you had Tourette’s syndrome we were devastated at first — we knew so little about the condition and were sent away from the doctor with only basic information. We went through denial, grief, anger and the seemingly hopeless search for a cure. But then we thought it wouldn’t matter because your tics weren’t too outlandish. You were still the same boy.

During your teens you knew you had other problems. OCD, anxiety, depression. We thought you were just going through normal teenage issues and didn’t realize how serious it was.

I suppose I didn’t want to accept it. I wanted my golden boy with the world at his feet. I was not prepared to give up on my dream.

But the problems didn’t go away, did they? They got worse until you dropped out of school and became a recluse. My world fell apart. I was angry. This wasn’t what I wanted for my child. This wasn’t supposed to happen!

I wanted you to try harder and not give into your fears. I wanted to shake you and to tell you to wise up!

Screen Shot 2015-07-23 at 1.05.49 PM

It was all about what was best for me, not what was best for you.

We’ve come such a long way since then. The road has had some pretty serious bumps. Maybe it was the problems with my own mental health that finally made me understand the much bigger battles you were fighting on a daily basis. 

I look at you now and I see a young man who refuses to give up. I see the energy and determination you once used to excel at sports, music and school is now needed to help you survive each day. I see the intelligence you always had gives you insight into your condition, even though that doesn’t make it any easier.

Life has not taken the road I thought it would. It’s taken me a long time to accept that. But I still have to appreciate the good things in our lives. I still have my son. I can hug you, talk to you and laugh with you. Not everyone has that. I no longer want you to fulfill my dreams for me but instead will always support you in trying to fulfill your dreams, no matter how big or small they may be.

I gave you life. Now my role as a mother is to allow you to live that life the way you want, and be there beside you through the good times and the tough. Wherever the road takes you I know you will keep traveling it and make the best of it. Know you will never have to travel alone. I’m prouder of you now than ever I was. You’re still my golden boy and I’m proud to call myself your mother.

With all my love and admiration,

Mum xo

914
914
2
TOPICS
,
JOIN THE CONVERSATION

When a Taxi Driver Called People Like Me 'Crazy'

271
271
0

It happened a few weeks ago. I was sitting in a cab on my way to the train station, when my driver decided to ask me some questions. 

I’m a psychology major, so we quickly ended up on the subject of mental illness. The driver was friendly, and asked me about the differences between a psychiatrist and a psychologist. A psychiatrist was someone who could prescribe psychiatric medication, I explained.

He replied, laughing, “Oh yeah, you don’t wanna work with those crazy people.  Those are the ones on the meds.”

I quickly changed the subject as my heart sank. I wish I had said something. I wanted to tell him, “Hey, those who take medication for their mind aren’t crazy.” I take medication for my own mental illnesses, and it’s made a world of difference for my quality of life. Before I was on medication, until my ability to function had decreased significantly, most people I interacted with on a daily basis had no clue what I was going through.

Crazy implies violent or out of control. Crazy implies something negative or disgusting. People with mental illness are not crazy. I’ve felt as though my brain was on fire as my OCD thoughts spun in circles and my compulsions got the best of me. I’ve felt as though I would never be happy again, followed by a day of high energy, fast talking, endless laughter, infinite ideas and racing thoughts all because of my bipolar disorder. I’ve felt as though, no matter how hard I tried, I couldn’t eat more than a couple bites of dinner because of my eating disorder. Sure, I’ve felt lots of horrible things because of my disorders. But have I ever been crazy? No. No, I haven’t. 

I see a psychiatrist once a month and a therapist every week. I take medication every morning and every night. This doesn’t make me crazy; the tablets of lithium, other mood stabilizers and antidepressants don’t make me crazy. They don’t change my personality at all. They just help me feel less sick inside my mind. If I take my medication and work hard at therapy, I can feel relatively balanced and well. Less mood swings, less obsessing, less anxiety.

Taking insulin for diabetes isn’t crazy, while taking lithium for bipolar or zoloft for OCD is “not natural.” I’ve never heard anyone tell a diabetic with low blood sugar to ‘snap out of it,’ while I’ve heard clinically depressed people receive that very remark.

I wish I told my cab driver how I really felt about his comment, because he is far from the only stranger who has a stigmatized view of mental illness. I wish I had been brave enough to stand up for not only myself, but for other who have mental disorders. I wish I didn’t feel ashamed to tell people when I’m going to therapy or picking up my medications. I wish it were as accepted as any other illness, although I know society is working hard to improve this.

I wish I could’ve said, “If psychiatrists are for crazy people, then I must be nuts!”

Screen shot 2015-07-17 at 5.59.23 PM

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about your mental illness. How did you react, and what do you want to tell people who hold his misconception? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

271
271
0
TOPICS
JOIN THE CONVERSATION

This Is What OCD Feels Like to Me

21
21
0

I have OCD. This makes me feel like a human juxtaposition. I feel happy, yet also sad. I want freedom but, at the same time, I want control. I want to be alone, yet surrounded by lots of people. It’s a constant conflict in my mind, two opposing feelings, two opposite desires for life.

What’s often tricky is trying to choose which feeling to listen to, or if I should actually listen to any at all. Are these emotions just working in tandem at this moment in time? Is there anything I can do to separate them? Or should I try to analyze my emotions and make a cumulative decision on how to get myself out of this mindset? It’s like my emotions get mushed together until they’re shrouded in fog. Undefinable.

The best way I can describe this is by imagining emotions as paint. Happiness is white and sadness is black. Sometimes we feel them as separate emotions. They are easily definable, simply black or white, but sometimes they can mix together into a convoluted mess of color. The black and white form grey; the happiness and sadness form almost nothingness. That middle color–is it more white or is it more black? Which color outweighs which? Am I actually happy or am I, in fact, sad? Do I accept the fact that the primary colors cannot be reversed? Should I just let my emotions be? Or do I analyze this grey?  I’m not suggesting either of these methods is the “right” one. Emotions are complicated.

Conflict in our minds is a daily battle. Unfortunately, it’s going to happen regardless of what we do. “Intrusive Thoughts vs Rational Thoughts – The Prequel” (aka my life); however, they don’t always cause us distress. For example, there could be the conflict between which coat to wear. Does it go with my outfit? Is this jacket too warm? What if it gets sunny? But what is it gets cold? Every day, discussions arise in our heads without us even realizing.

Thoughts can have us jumping from emotion to emotion and, sometimes, even no emotion at all, but that’s OK. At this moment in time I have no real advice about what to do in these situations, other than understand. I really hope my explanation above was somewhat understandable too…It’s OK to lose grip of your emotions, it’s OK not to understand your emotions, it’s OK not to be able to define your emotions. It’s really tricky, I know, but this feeling (or non feeling) will pass. You’re not alone in this.

image1

This post originally appeared on Ellen’s OCD blog

Want to end the stigma around mental illness? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

21
21
0
TOPICS
JOIN THE CONVERSATION

To My Family: 'Thank You' Isn't Enough, so Please Accept This From Me

93
93
0

To My Family:

Who don’t we thank enough? “Parents” may be a common answer to this question. But for many teenagers, their ignorant response may be a little different (and I am guilty of having been a “difficult” one!).

Writing this now as an independent 28-year-old, all I can say is this: If I could go back in time and actually listen to one thing you said, it would be to “trust you.” You were right. I wasn’t going to understand you then. In fact, anything you said sometimes went in one ear and came out the other with the exact opposite meaning. But I needed to trust that there was a method to your madness. There was a reason you raised me the way you did.

Having a child in psychotherapy takes a toll on an entire family. It takes a toll on everyone in their lives. Looking back, it must have been like having two kids for the price of one. When I was a child and experiencing OCD, there were good days and bad days. And the days changed so quickly you probably wondered, “Where did my child go? Where did my sister go? She and her bubbly self were just here yesterday.” Now, I wish I trusted you through every up and every down and believed you when you said, “This, too, shall pass.”

four women in warm jackets

Reflecting back now, there is no word in the dictionary that would come close to adequately expressing how I feel for my parents and family; however, “unconditional” comes pretty close. Because that is what they are. No matter what I did or what mental state I was in that day, they never closed the door on me, and they always strived to teach me, to instill hope and to trust them — even at times when it seemed like they were speaking a foreign language to me.

There is never a day that I don’t get out of bed in the morning now and thank God for them. Whether you’re religious or not, my advice to anyone young and struggling would be to give your loved ones who are trying to help you the benefit of the doubt. I know it’s not easy. But at the very least, don’t give up on the trust they have for you because this unconditional love will never go away. This love has nowhere to go, but to follow you and be a reminder that you are not alone and never will be.

One billion thank-yous will never be enough, but at the very least, please now accept my trust in you and that I can admiringly look back and see your trust and faith that you always had in me — no matter what.

I love you forever and always,

Ally

The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a 400- to 800-word thank you note along with a photo and 1-2 sentence bio to [email protected].

Want to end the stigma around mental illness? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

93
93
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.