Dear 16-Year-Old Me

Dear sophomore-in-high-school Jackie, who just spent Thanksgiving sobbing on Grandma’s bathroom floor,

I promise you: it won’t always be like this.

It’s hard to imagine that now, I know. Doubt has been clawing at your mind for nearly a decade already, and now, this holiday, it seems like it’s finally captured you, a relentless grip you can never escape from. Everyone else is upstairs eating turkey and playing dominoes. Soon you’ll have to gather yourself together—thank goodness you don’t wear mascara yet—and head back upstairs to fake it. All you know is that something is wrong with you—your mind is in slavery, and you fear you’ll never find freedom. It’s not true. Oh, it’ll be a while still, about twelve more years, but you’ll find freedom. Believe me.

Here’s the truth. It’s OCD. Obsessive-Compulsive Disorder. You always thought it meant someone who washed their hands too much, someone who was a neat freak—and that was absolutely not you (I hate to tell you this, but even in your thirties, you still can’t keep your room clean), so you never gave it a moment’s thought. And now, in 10th grade, you’re only starting to learn how to use this wild thing called the internet. I know it’s not going to occur to you to Google “I think bad thoughts.” Scratch that. Google won’t even exist until next year.

Unfortunately, it’s going to get worse before it gets better. You’re going to wander down so many ugly alleys, obsessing over hell and your identity and the nature of reality. You’re going to believe that you’ve literally gone crazy, and no one on earth can keep record of the tears you’ll cry. But you’re going to write about it—all of it—and it’s going to be such lovely therapy for you in the interim. (Minus, of course, those months when that bastard OCD made you wonder if fiction was sinful like lying and you couldn’t go near your poetry or prose without feeling sick over it.)

You’re going to fill notebooks in high school with dramatic diary entries and over-the-top poetry. You’re going to go to college and study writing and pour your heart and energy into the creative work you’ll encounter there. You’ll even center your senior project—a memoir piece—around your battle with OCD, only you won’t have a name for it yet. But when the bottom drops out of your life in those years after college, you’ll finally be diagnosed, and it’s then that you’ll turn to writing novels.

Exposure therapy will save your life. And so will writing. So will Mom and Tracy and Megan and Cindy and Erica and Desiree and Ashley and God.

This holy amalgam will make you free. You won’t even know what to do with all the freedom, a surfeit of it, washing over you like a baptism, swilling out the pain, leaving behind … writing.

And so you’ll write. You’ll write stories that are raw and painful but hopeful. You won’t be able to write the ending to your first novel without having gone through the hell of OCD first. You’ll look back and say, Now I see. Same with your second novel.

So, for right now, teenage me, hold on. Find hope wherever you can, especially in others—they will keep you alive. And write. In every moment, good and bad, write. Let writing be your refuge and rescue. Give up the stupid show of pride. You’re going to need so much help; learn to ask for it. Find a place in your life for gray; throw your arms open wide to uncertainty. This will save you.

Love,

Jackie, now 35, free and writing

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Sweet Freedom

freedom in redAlison Dotson, president of OCD Twin Cities, and I were emailing recently about how sometimes we feel as if we say the same thing post after post, article after article, especially since they usually involve our own stories with OCD, and history doesn’t change.

But I reminded her that even if we’ve heard our stories over and over, someone else might be hearing it for the first time. Not to mention that sometimes those of us with OCD need to hear the truth multiple times before it is finally able to sink into our heads and hearts.

So here it is again:

I was in bondage to obsessive-compulsive disorder for twenty hellish years. I was plagued by ugly, intrusive thoughts that caused me intense anxiety and even terror. Many days I felt completely out of control of my own thoughts, and I hated the ugliness that polluted my mind. I was sad, lonely, depressed, lost, engaged in an ongoing war where the battlefield was my own brain.

And then an amazing psychiatrist named Dr. Suck Won Kim gave me not only a prescription but also the phone number to a cognitive-behavioral therapist in the area, along with the warning that ERP therapy “will be hell” and the encouragement that I had to do it anyway.

And I did. For twelve grueling weeks, I practiced the exposure therapy assignments set out by Dr. Christopher Donahue, and after twelve weeks of hell … I was free. Free for the first time since I was seven years old. I could barely even remember what freedom felt like, what it felt like to be master of my own thoughts, to rule over my OCD instead of having it rule me, and so it was actually a little scary at first.

But let me tell you: you get used to freedom, joy, and light pretty darn fast.

The last five years have been magnificent.

Please, please ask me questions if you have them.

For (lots!) more about OCD and ERP, go to jackieleasommers.com/OCD

Image credit: Jesus Solana

The Long Journey … to the Starting Line

"Cross That Line" by xLadyDaisyx on deviantArt

“Cross That Line” by xLadyDaisyx on deviantArt

It is SO HARD for an obsessive-compulsive to be correctly diagnosed and then find the right treatment and a good cognitive-behavioral therapist.  In fact, it takes an average of 14-17 years for someone to access effective treatment.

That stat stings my heart.  I feel it deeply because of my own personal struggle.

I developed a sudden onset of OCD at the age of 7.  I wasn’t diagnosed with OCD until I was 22.  I started ERP (exposure and response prevention) therapy at 27.  That’s twenty years, folks– fifteen just till diagnosis alone.

Growing up, I just assumed that I “thought too much”– was an “overthinker” and especially sensitive to issues of morality. I didn’t understand that other people were also undergoing the same doubts as I was but were able to move past them with ease.  I, on the other hand, would get trapped.  The exit door to my brain was stuck shut, so all my thoughts just milled and churned and generated intense anxiety.  I didn’t know that others even had the same thoughts as I did, nor did I realize how it would be possible to let such thoughts come and go.

In childhood, I cried all the time.  In fact, I cried every single night for three years in a row.  I never told my parents about this.  I was so scared that they wouldn’t be able to “fix” me that I preferred to just rest in my own sadness, still clinging to the hope that *someday* I could be fixed.  As long as no one told me it was impossible, it still felt possible, and even thought I was terrifically sad, I kept that hope as my lifeline.

High school was a beast.  I got straight A’s (OCD drove me to perfectionism) and graduated at the top of my class.  I was a class clown, and I had some amazing friends.  But I battled intense spiritual doubts and lived in great fear.  My tenth grade year was one of the hardest of my whole life.  Only those closest to me knew it.

My doubts intensified in college.  They escalated to a whole new level.  Thankfully, I had a solid support system in my new friends (people who remain my support system to this day!).  And though they couldn’t understand what I was going through, they loved me.

After undergrad, things fell apart.  In a nutshell, I lost my grip on reality– my doubts had grown so large and out of control that I no longer knew if I could trust my friends or my own human experience.  Finally, for the first time in my lifesomeone used the words mental illness with me.  It felt shocking.

I was encouraged to meet with a therapist (unfortunately, a talk therapist– not effective for OCD), who also got me in to meet with a psychiatrist, and I was finally diagnosed with obsessive-compulsive disorder.  A diagnosis fifteen years in the making.

I spent about a year with that first talk therapist, and it was more damaging than anything else.  I finally “escaped” and never again set foot in that clinic.  Meanwhile, I was an SSRI lab rat, trying out a slew of various medications to treat my OCD.  I eventually went back to talk therapy– this time to a much better therapist, who was a true blessing, although she still didn’t truly understand OCD, and so my therapy included a lot of reassurances.  In other words, this kind, amazing woman who loved me was just reinforcing my compulsions.  Not good.  I also took a break from trying out medications after one stole all my energy and made me rapidly gain weight.  I was overweight for the first time in my life– all due to a medication– and have struggled with my weight ever since.

Five years after that initial diagnosis, my psychiatrist was out of ideas.  Literally.  She asked me what I thought we should do next.  I, of course, had no clue.  She referred me to an OCD specialist.

This incredible man– Dr. Suck Won Kim– changed my life.  He got me onto the right medication (almost immediately) and essentially required that I begin ERP, even giving me the name and contact information for the therapist who would ultimately allow me to bottle up my OCD and put a stopper in it.  Dr. Chris Donahue, to whom I’m forever indebted.

Twelve weeks was all it took.  In one sense.  In another, it took twenty years.

My life was a mix of depression, anxiety, compulsions, “bad” thoughts, and wrongness, and then twelve weeks later, I felt the burden of OCD lift from my shoulders.  I was giddy with freedom.  Five years later, I still am.

I hear from obsessive-compulsives every week who are in their 50’s, 60’s, or even older, who are still seeking appropriate treatment.  This absolutely breaks my heart.

On the flip side, I’ve had the incredible experience of meeting Maddie, 11, and her incredible parents, who leapt into action almost immediately and got her into ERP within months of her OCD onset.  In the same year, she developed OCD, was diagnosed, and was treated.  Marvelous!

That’s one of the reasons I blog about OCD.  To help people to understand earlier what they are dealing with and to encourage them to seek appropriate treatment (ERP, with or without medication).  It still just boggles my mind that in 2013, mental health practitioners still don’t know that ERP is the answer.  People get passed around from talk therapist to talk therapist, when the solution should be so ready, so available.

Do I have OCD?

Before my diagnosis and, hence, before I’d done a lot of personal research on obsessive compulsive disorder, I thought of OCD as “that disorder where you wash your hands a lot” or “the one where people tap the doorknobs” or “when you’re a really big neat freak.”  In some ways, my diagnosis was a surprise to me because I didn’t do any of those things.  But on the other hand, just the term obsessive sounded so much like my situation that I was willing to listen.

Maybe a year or so into my original search for medication (I ended up taking a year-long hiatus from the search after Luvox stole all my energy), I suddenly started worrying (or maybe even obsessing) that what I had wasn’t really OCD.  I seem to talk to a fair amount of obsessive-compulsives who also reach this point, worrying that maybe someone has plastered a name on them that is incorrect.  The interesting thing about this is that the OC usually feels guilty about it– as if they are receiving compassion and medical advice and help from friends and family for nothing, or what they are worried is nothing.

Interestingly, such a huge worry and incredible guilt only point to OCD all the more.

The more I have learned about OCD, the easier it is for me to see it in others.  Though I am by no means a doctor, I now believe that OCD is pretty easy to diagnose.

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It’s all in the name.

Obsessive-compulsive disorder.

 

1) Do you have obsessions?  Basically, do you have intrusive thoughts that you find ugly or disturbing but that you can’t seem to stop thinking about?  Common themes center around questioning your sexual orientation or if you really love your significant other, thoughts about harming yourself or others (even children), blasphemous or sinful thoughts, worries that you or people you love are going to die, sexual obsessions, intense fears about contracting a disease.  Ask yourself, do I have intrusive thoughts that cause me serious anxiety?

2) Do you have compulsions? The answer to this question might not come as easily, but what it is really asking is this: when I have those intrusive, anxiety-causing thoughts, what do I do to attempt to relieve that anxiety?  Maybe your fears about germs cause you to wash your hands, making you temporarily feel a bit of relief about that possibility.  Maybe your fear about harming a child means that you won’t allow yourself to hold your baby girl.  Maybe it even means that you avoid driving down the street where a lot of children play.  If you have blasphemous thoughts, perhaps you repeatedly ask God for forgiveness or you’ll ask other people if you think that means you are now going to hell.  Sometimes compulsions seem a little “magical” too– for example, you relieve the anxiety caused by your intrusive thought by tapping your foot a certain number of times or by avoiding stepping on cracks.  Even if it doesn’t logically make sense, it’s still something providing you some temporary relief.  Seeking reassurance is a huge compulsion for a lot of different kinds of obsessions: we glimpse relief when friends reassure us, No, you’re not gay.  No, you’re not going to get sick.  No, you would never hurt a child.  No, you’re not going to hell for that.

There is a third question to ask too, although this one may or may not be reached immediately, which is
3) Have your compulsions gotten out of control?
Most obsessive-compulsives reach a stage where the compulsions (that began as an anxiety-reliever) become too much and begin to add to the anxiety: you can’t stop washing your hands, you ask for reassurance so constantly that your friends are annoyed, you are driving a long way out of your way to avoid the street with children, you are tapping doorknobs and counting and repeating phrases in your head to the point that you’re starting to look a little silly.

Like I said, I’m no doctor, but when I talk to someone who wonders if they have OCD, these are the three simple questions I ask.  If you can answer yes to the first two, then you have OCD.  

So, what next?
1. Get an official diagnosis from someone who went to school for it. 🙂
2. Skip the talk therapy and go right for cognitive-behavioral therapy.  This is treatable.