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

teen me.jpg

Question & Dancer: Compulsions, Doubt, & HOCD

question-and-dancerI’m an artist not an expert, one who is learning to embrace questions more than answers.

These are some questions I got last month. Ask yours here.

Donnann asked: How do i deal with intrusive thoughts in the form of questions which sometimes i feel like i need to answer? They give me anxiety not finding an answer either by googling or asking reassurance.

Hi friend, asking reassurance (of friends, strangers, Google, the internet, etc.) is, in this case, a compulsion. Compulsions will never be the solution for an OCD sufferer. In the moment, it might feel good, but it is not a lasting solution. I’ve shared a metaphor before about OCD as an arsonist, setting fires in various corners of our brains. Compulsions are short-sighted in that they try to put out individual fires. It is impossible to keep up this way because while you are putting out one fire, OCD the Arsonist is setting another three. Exposure and Response Prevention (ERP) therapy, on the other hand, goes after the arsonist itself. Compulsions are band-aids; ERP is surgery.

Aurora asked: Is it common for HOCD sufferers to begin questioning whether they really have OCD?

Incredibly common, and not just with HOCD. I think that just about every person who has OCD of any stripe has, at one point or another (or a thousand points), wondered if he or she really does have OCD. Remember, OCD is called the “doubting disease.” It lives up to its name in the fullest sense, even down to a diagnosis. I know that, even when I was diagnosed with OCD and then read a book about it in which I saw myself over and over in the examples, I still faced that question. Everyone I know who has OCD has had this same concern. You are not alone!

Susan asked: What do you do when in church and the bad thoughts come?Also how do you stop ruminating?

This is not going to be a popular answer, but here it is: you let the bad thoughts come. You let them just be thoughts and don’t assign any special value to them. You let them exist and you do not fight them. OCD feeds off resistance. When we quit resisting, it gets bored with us. You learn how to do this in a healthy way via Exposure and Response Prevention (ERP) therapy. Just twelve weeks of ERP set me free after 20 years in bondage to OCD. After I learned to stop resisting and to not give bad thoughts too much value, they quit coming as often. In the first 18 months after doing ERP, I had no obsessions or compulsions. In the years since, I do very little ruminating (maybe one or two obsessive relapses each year, no more than a couple hours each). Compared to my nearly constant ruminating for two decades, this is peace and freedom.

Briana asked: Am I ever going to find someone?

Briana, you and me both, girl. I’m window shopping on eHarmony. How about you?

Halima asked: What have I done to deserve this?

Nothing, dear one. Illness sometimes just is what it is. That said, as one of deep Christian faith, I do have lots of thoughts on this. But I don’t believe it is a punishment at all.

Halima asked: How do you manage your OCD in different times of the day when the feelings of doubt and uncertainty are the most crippling?

It has been nearly nine years since I underwent the ERP therapy that changed my life. I very rarely experience that high-intensity, crippling doubt anymore, even though I was well acquainted with it for two decades. When I do have these attacks, I go back to my ERP toolbox: I accept the thoughts, I do not assign special value to them, I refuse to succumb to compulsions, I assess what the community standard is (or ask friends if I cannot tell this myself), and then I go forward with that standard. I make this sound so easy, and I know (believe me, I know!) that this is not easy, not at the beginning. In exposure therapy, you are trained how to do this, and your brain is actually re-wired so that you are able to do this. The brain actually physically changes. That might sound scary, but for me, it has allowed me to be the very best version of myself in all ways: I am more curious, more thoughtful, more productive, more creative. ERP did not erase my questions. It gave me the tools and strength to approach them in a productive way. Before I would just chase questions around and around and around, like a dog chasing its tail.

I also think naps are awesome. 🙂

Anonymous asked: What if you do see a major loss of attraction to the gender you’ve always been attracted to but don’t see a spike in false attractions to the same sex?

This sounds like so many HOCD stories I have heard over the years. The answer is still the same: exposure therapy. I invite you to read more about this from Hannah and Mae, a couple of former HOCD sufferers who each went through ERP:

Interview with a Former HOCD Sufferer
Another Interview with a Former HOCD Sufferer
A Third Interview with a Former HOCD Sufferer
A Fourth Interview with a Former HOCD Sufferer
Q&A with Former HOCD Sufferer

HOCD Story: Meet Mae, Part One

HOCD Story: Meet Mae, Part Two

Anonymous asked: Hocd or never was? – I was diagnosed OCD about 7 years ago. Had many OCD behaviours, fear of aids, terrified I’d commit a crime and would be arrested, checking I haven’t hit someone with my car, checking food, washing my hands and lips because I felt dirty or was too close to something I deemed dirty. My biggest one is hocd. I was treated for it and had good success, thoughts were still there but I coped. But since starting uni and wanting a career as a beauty therapist it’s come back big time. I have a recurring obsession about a past friend who I still sometimes see that I’m attracted to her. It will kind of rotate friends and aquaintanxes until they’re spent and then come back to her as a ‘failsafe’ as my mum calls it. But recently, I foolishly looked for reassurance on a message board, and found a post that said after therapy for hocd you might find out your gay and apparently that’s ok. Now I’m terrified to do my ERP/CBT homework. I’m also thinking it keeps resurfacing because I’m actually attracted to women and must accept it. I sometimes don’t feel disgusted anymore and not anxious and that makes me even worse. I’m just so scared that I will turn out gay, have to leave my boyfriend give up on my future family with him. I’m so scared sometimes I feel not scared anymore. I’m so lacking sleep right now. I’ve referred myself to a therapist again, but I’m terrified he or she will reveal I’m gay. I’m so afraid, please help? I read your interview with a former hocd sufferer and pray that can be me soon.

This is a very common fear for people going through ERP/CBT– that it will actually “reveal” something about them, whether that is related to their sexual identity, their “life of crime,” their “evil nature,” etc. It’s important to remember that OCD goes after the things that are most important to us, the things we deeply value. That is what makes it so hard to do ERP. If OCD went after things we didn’t care about, it wouldn’t cause that anxiety and all the questions. Stop assigning special value to these thoughts (“it must keep resurfacing because it’s actually true”); it keeps resurfacing because you have OCD and your sexual orientation is of utmost importance to you, that’s all. I’ve talked to MANY HOCD sufferers, and I’ve never heard one of them say they wish they hadn’t done exposure therapy. I am doing my best not to offer reassurances in this response (I don’t cater to compulsions!), but it’s hard! I will just say that I don’t think you can go wrong with ERP.

Thanks for all the questions, folks! If you have questions for me about anything (but especially faith, creativity, and mental illness), add yours here.

As I said, I’m an artist not an expert. I will leave you with these, some of my favorite questions in one of my favorite poems, “Questions about Angels.” Click here to hear Billy Collins himself read it. (P.S. It starts with questions, ends with a dancer.)

 

 

 

No Shortcuts

When Jeff Bell, spokesperson for the International OCD Foundation, spoke for our OCD Twin Cities event, one of the things he said that really stood out to me was that there are no shortcuts in treating OCD.

Woman and maze

That’s true, or at least it was in my case. I wanted easy answers: for deep theological conversations to solve my problems, or for comfort and reassurance from friends to be enough, for an hour-long conversation with a therapist each week to take away the anxiety, for an easy prescription to fix everything.

I definitely did not want the hard answer: exposure and response prevention therapy.

My psychiatrist didn’t mince words in his description: “It will be hell.”

It was one of the hardest things I’ve ever had to do in my life, but one of the most necessary and most rewarding. For me, there was no shortcut to healing, and since I was already living in OCD hell, the best way out was to keep going.

So, believe me, friends: I get it. ERP therapy is hard, so hard. You might think you won’t survive it. You might think your loved ones won’t survive your going through it. You might think it’s sinful or disgusting, and your exposures are probably going to be loathsome and repellent to you.

If you need to, go ahead and look for shortcuts. I know I had to.

But in the end, there were none for me, and I’d only wasted time looking for them.

While experiencing it, ERP was hell. But on the other side? It was my rescue.

 

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

A War in the Mind

war in my mindI remember the Sunday mornings in church when my mind was a war zone.

An intrusive thought would show itself, and with my Pure-O compulsions, I’d mentally bat it down (usually with repetitive prayer).  I was a ninja with my compulsion moves, but OCD was just as fast and furious.  Back and forth, back and forth, like a relentless game of Whac-a-Mole.

And no one knew.

All these happy people around me, worshiping God, taking in the sermon, happy and safe in their suburban church sanctuary– and, for me, it was a battle field.

Pure-O: so invisible, so dark, so exhausting.

I praise God that those days are a part of my past.  If you want to learn how I survived (and WON) this war, click here.  Your mind doesn’t have to be a scary place.

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

Image credit: unknown.

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.

Live OCD Free app: my review

I first learned of the Live OCD Free app when I was in Boston last October, attending an event hosted by the International OCD Foundation.  I was intrigued by the idea of a web app that could simulate or guide Exposure and Response Prevention, so I picked up some handouts to take back to my university, and that was that.

Until I had lunch with Faith, this incredible 9-year-old who is battling with OCD.

Somewhere in the back of my mind, I had stored the memory that this app had a children’s version to it, so I contacted the company and asked if I could have a free trial of the app so that– if I liked it– I could promote it on my blog.  I received a very kind email from Dr. Kristen Mulcahy, who also sent me a promo code.

Live OCD Free app

What it is: 
Billed as “your personal pocket therapist,” this web app allows you to undergo cognitive-behavioral therapy (CBT), specifically Exposure and Response Prevention (ERP), either on your own or with the help of a therapist.  With it, you create a hierarchy of exposures, practice your exposures, and record your progress.  You can even easily email your progress reports to your therapist!  There is an adult version and a child version (both available with just the one purchase).

Child version:
In the child version of the app, there is a video that shares the story of the “Worry Wizard” with the child– in the video, the Worry Wizard happens to be another person (a bad kid, ha!), which I kind of like.  It goes along with the idea of narrative therapy that YOU are NOT the problem, the PROBLEM is the PROBLEM.  By showing children that the Worry Wizard is a completely separate entity from themselves, they are able to treat OCD as the enemy and not themselves.

ERP is then made into a game of sorts.  Children (along with the help of an adult) create a list of exposures (with simple prompts to aid them).  They then can practice their exposure at the click of a button.  If there is a need for an imaginative exposure (creating a loop tape/recording), they can do that within this app as well.  There are also built-in timers to remind users to practice their exposures and to record their anxiety levels (for the progress reports).  It’s really easy to use, very self-explanatory.

Adult version:
The adult version is very similar to the child version except that it just tells it like it is. 🙂  

PROS:
The secret weapons (child version)/toolbox (adult version).

Oh my goodness, I absolutely loved this feature*.  When you choose to practice an exposure, you set the timer for how long you’d like to do it.  While you are practicing an exposure, you can access the secret weapons/toolbox area, which includes:

1. Reasons for fighting (both versions).  A place where you can review and record your reasons for fighting OCD/the Worry Wizard.
2. Uncertainty agreement (adult version).  Where you acknowledge that you cannot know things with certainty.  This records the date that you “signed on” for this!
3. Relaxation (both versions).  Listen to an exercise in muscle relaxation.
4. Motivational messages and inspirational quotes.  You can even add your own!
5. Tips from other kids fighting the Worry Wizard.  Obviously, this is in the children’s version.  Loved it.  The quotes were so good and meaningful and encouraging without being enabling at all.
6. Songs (child version).  This included two songs for children (although there is a whole CD available on iTunes).  I have to admit, one of the songs– “Worry Wizard”– made me cry listening to the lyrics.  It just breaks my heart that children have to deal with this crippling disorder.  They are so brave!

*When I was doing my own exposures, I was told to focus intently on them … I wonder how this toolbox jives with that, or if that was only my therapist’s method.

Live OCD Free User’s Guide
This is wonderfully written, very clear.  If someone is choosing to do ERP on their own and without the guidance of a therapist, this user’s guide will be critical to their success.  Since I have undergone CBT, I now find it fairly easy to recognize obsessions and compulsions– and to identify appropriate exposures.  However, I would not have been able to do this if I hadn’t gone through ERP myself already.  The prompts are very helpful (and OCs often know what things bring them the most anxiety), but this user’s guide will be a huge help in sorting through obsessions, compulsions, and exposures.  I emailed with Dr. Mulcahy, and she said that sometimes people will meet once or twice with a cognitive-behavioral therapist just to set up their exposure hierarchy before attacking the actual exposures on their own.  Even if you don’t have health insurance, I can see where this would be very helpful.  If not, the user’s guide will assist in that matter.

Progress reports
This app makes it easy to see your progress.  I love that.  A visual reminder of how far you’ve come can go such a long way!

CONS:
There are very, very few cons to this app.  The graphics in the video of the Worry Wizard were not my favorite, and (of course) being a writer, I thought the story could have used a little polishing, but all in all, this app is phenomenal.  

The cost is around $80, which at first seemed like a lot of money to me … but it’s really not.  Not for what you get.  An ERP experience for $80 is a bargain (even with awesome health insurance, I still probably paid about $300 out of pocket to meet with my cognitive-behavioral therapist).  And the freedom to be gained through this process is priceless.

I imagine that CBT without the guidance of a therapist would also be more difficult, especially as there is less accountability, but the truth of the matter is that CBT takes a lot of commitment, no matter what.  I have said it before and I will say it again, you know you are ready for CBT when the hell you’re experiencing daily is worse than the hell you’ll have to go through with CBT.

All said, I highly recommend this product.

I cannot say enough good about CBT/ERP and how it gave me back my life.  Whether someone chooses to go the traditional route of seeking out a cognitive-behavioral therapist (note: NOT a talk therapist) or chooses to use this web app … or chooses to use both in conjunction with one another … I am 110% for it.

The important thing is that you pursue CBT.

Live-OCD-Free_App_12

obsessive-compulsive since age seven

My OCD struck at age seven.  Strep-throat-gone-to-hell and all of the sudden curse words were running through my head as if I were some foul-mouthed sailor, when the truth of the matter was that I was a shy (Yes, really!  Hard to believe now!) girl from a conservative home, who would have never DARED to utter those phrases outloud.

I began to worry that I would lie if I gave my opinion, so for a while, my answer to everything was “I don’t know.”  Favorite color?

I don’t know.

Did I like my teacher?

I don’t know.

Should we do this or that?

I don’t know.

Ridiculous.

I have this image in my head of running to find my mom under the clothesline, smacking my fist against my forehead, and confessing.  My poor mom.

I wish we’d known then.  It would be another fifteen years before my OCD would even be named, but I’ve wondered what life would have been like had we caught it back in the summer of 1989.  Drat you, internet, for coming along too late!

Every once in a while I google things like “my daughter is attacked by bad thoughts” or “my daughter has bad thoughts” or “my daughter keeps confessing” to see how quickly the trail leads to OCD.

My heart breaks for the obsessive-compulsive children out there, wild minds racing, hearts terrified, robbed of childhood.

Parents can look for the following possible signs of OCD:

  • repetitive confession
  • constantly seeking reassurance
  • raw, chapped hands from constant washing
  • unusually high rate of soap or paper towel usage
  • high, unexplained utility bills
  • a sudden drop in test grades
  • unproductive hours spent doing homework
  • holes erased through test papers and homework
  • requests for family members to repeat strange phrases or keep answering the same question
  • a persistent fear of illness
  • a dramatic increase in laundry
  • an exceptionally long amount of time spent getting ready for bed
  • a continual fear that something terrible will happen to someone
  • constant checks of the health of family members
  • reluctance to leave the house at the same time as other family members

I waited fifteen years to be diagnosed.  Just take your kiddo to the psychiatrist.*

*I’m not mad at you, Momma. 🙂  How could we have known?  You’re my favorite.