nOCD, an ERP App/Hero

If you’ve spent time around this blog, you know that I wrestled my life and freedom back from the clutches of obsessive-compulsive disorder in 2008. (Read more about my story at jackieleasommers.com/OCD).

From the onset of my symptoms to my diagnosis: 15 years.
From my diagnosis to appropriate treatment (ERP): 5 years.
From treatment to freedom: 12 weeks. (<–Read that again please.)

Exposure and response prevention (ERP) therapy is powerful, friends.

On average, it takes OCD sufferers 14-17 years to get the correct diagnosis and treatment. This is not okay. 

So many OCD sufferers cannot afford treatment. In some countries, ERP therapy is simply not available. In fact, in some countries, the stigma associated with having a brain disorder like OCD is so strong that sufferers would not dare admit to needing help. This is not okay. 

The creators of the nOCD app felt the same way. One contacted me and said, “Our goal is to reduce the time it takes for people with OCD to get effective treatment (from decades to minutes).” He said, “One thing advocacy has shown me is the need for OCD treatment in other countries! There are people in Bangladesh, India, etc that have literally nobody! My team is actually building a 24/7 support community within nOCD to combat this issue.”

The app is FREE and, I-hope-I-hope-I-hope, going to change the world.

Some of the very best things about this app:

nocd.jpg

Right now it’s available for iPhones, but this fall, the Android version will come out. Please check it out here. And be sure to tell me what you think!

xoxo Jackie

May the Free Make Others Free

 

Originally published on The Redeeming Things blog in September 2013. Edited only slightly here; note that where I talk about four years of freedom … it has now been nine. Amen.

unsplash74Last week, while listening to an audiobook by Anne Lamott, she mentioned a line she tries to live by: “And may the free make others free.”

I had to rewind a few seconds and listen to it over again.  And again, amazed at the stark and beautiful way these few words summarize the last four years of my life.

I have obsessive-compulsive disorder, an anxiety disorder that preyed on all I most value: faith, friendships, vocation.  Forget all media has ever taught you about OCD—it is not a funny, quirky, bothersome nuisance.  Instead, it is a hellish, tormenting thief and tyrant.  OCD is slavery, and I was in bondage to it for over twenty years.  I was a tormented pot that complained to the Potter, “Why-why-why did you make me this way?”

Four years ago, I stumbled, uncertain and afraid, through the door that led to freedom (labeled “Exposure and Response Prevention Therapy”).  It was a tremulous victory, and I’ll admit I was shocked to discover things like peace and joy re-entering my life for the first time in years.  Freedom gave me an exhilarating high that I have not yet come down from, even in four years.

These days, I am an OCD awareness advocate, a member of the OCD Network to Recovery, and a leader in OCD Twin Cities, an affiliate of the International OCD Foundation.  I communicate every week with people who are broken by anxiety disorders and other mental illnesses, my own OCD branding me as their war buddy, allowing me to move in closely and show them the way to health.  I advocate for Exposure and Response Prevention therapy, defend the right to and benefits of medication, and push back against the stigma of mental illness.  I talk to parents who don’t know how to help their children, to people whose anxiety makes their own home a prison cell, to those who are needlessly ashamed that they have a brain disorder.

OCD, once the thorn in my side, has become my platform.

So the Potter finally answered my tormented question.  I was given obsessive-compulsive disorder so that I, now the free, may make others free.

Question & Dancer: OCD & Family, Romanticizing Mental Illness, and What to Expect in OCD Remission

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.

How do you explain OCD to your family? Especially when you’re not sure whether or not your family has mental illness?

First I’ll say that I think that it’s up to each individual to determine whether or not they’d like to share– and how much. With OCD, many of our obsessions are taboo, which– quite honestly– makes the idea of sharing seem terrifying. I hear from a lot of younger sufferers too, who are under their parents’ roof and parents’ health insurance, which complicates treatment.

I heard from so many teens with HOCD that I wrote this post in 2015 so that they could share it with their parents and not have to say a word themselves. I’d be happy to write a general OCD one, if you guys think that would help.

As for me? I gave my mother a copy of Kissing Doorknobs by Terry Spencer Hesser– a copy in which I had underlined all the quotes that resonated with me. At that time, it was the best I could do to explain what I was experiencing. These days, I’m more articulate– but I have lived for longer with my diagnosis, been through treatment, and come out shame-free. I know many aren’t there yet.

Is HOCD a physical illness as well as mental?

Briefly, yes.

Hi, does OCD make you want to confess something even when it’s not true?

I have Pure-O, and confession was one of my biggest compulsions. I would confess to bad thoughts, things I thought might be sinful, anything that my OCD took and throttled me with. And yes, sometimes those were things that I didn’t even need to apologize for. But the anxiety would grow so intense that the only “release” was to confess. I got a lot of weird looks in those days.

Here is the thing: if you (like most people with OCD) can understand when you’re thinking or doing something off (you know it is not quite logical, even if you have created a weird sort of logic for it; or if you know it is something that the general public would not care about or confess), then don’t. This is fighting back against your OCD with the tools of exposure therapy. It will, for a time, feel like the anxiety will go so high that things will never be okay again, but that is the lie of OCD. The anxiety will diminish, and you will be okay. Stay in the cold pool long enough to adjust, and eventually the water will not feel cold anymore. But this can only happen by staying in the pool.

I read your post about OCD and creativity. Could those two ideas be linked to intelligence?

Great question. You’re likely referring either to this post or to this one.

Research has shown that high IQ is correlated with anxiety. Anecdotally, many people with OCD are also very creative (did you know popular YA authors John Green and Maggie Stiefvater both have OCD, along with unpopular YA author Jackie Lea Sommers? ;-))

HOWEVER, OCD is not something to be embraced. I know that in the past, I thought if I didn’t have OCD, I wouldn’t be as funny or quirky or creative. John Green, in a talk I once heard, shared that he also had that false understanding for a time– that his OCD was what fueled his creativity. He’s written about that here. Please read it; it’s very good.

The point is that– whether or not there is a link between OCD (bad, awful thing) and creativity and/or intelligence (good, excellent things)– we need to be careful not to romanticize mental illness or to give props to it. If you are smart or intelligent, kudos go to you, not to the disorder.

I treated my OCD in 2008, and now I am more creative, more me, more productive, more intelligent. So it wasn’t OCD that made me what I am at all. In fact, OCD was holding me back. Don’t romanticize mental illness. Treat it.

Hi…this is a weird question, but I’m worried ERP won’t work on one of my particular obsessions. I made some account on a website and now feel the compulsive urge to delete it because maybe I don’t like the username and it’s “contaminated.” But at the same time, I don’t want to delete it because I’ve invested some time into building it up (it’s a writing website, more articles you write higher rating you get)…but I’m worried if I don’t delete it, this anxious feeling will never go away!

That is a lie: the anxious feeling will go away … and possibly sooner than you’d think. ERP works great for situations such as these. You can do this.

With OCD, can it be possible that you don’t know the difference between what thoughts are even yours anymore or the OCD’s?

That is possible– and sometimes happens to me when I’m in sort of a manic state.

Most often, I can tell the difference. I know that one thing feels a bit ridiculous. And this is a hallmark of OCD (except in very young children): that people with OCD usually have some understanding that what they are obsessing about is not something that most people would worry over.

My ERP therapist taught me to look at these things through the lens of the “community standard.” That is, how would most people react in this situation? Because if my reaction is way off from that, then for ERP, I need to go with the community standard instead, even if it’s scary or hard.

When I am in the throes of an obsession, I sometimes can’t tell what the community standard is. I have literally sat down my friends or coworkers, explained the situation, asked for the standard response, and then BELIEVED IT and DONE IT, no matter how difficult. Because this too is part of exposure therapy, the very best treatment for OCD. (If you’re not familiar, you can read up on ERP at http://www.jackieleasommers.com/OCD.)

I have thoughts about death and how we will all disappear after this…and if life is meaningless or not I’m diagnosed with OCD and i had HOCD , harm ocd , etc… Is that a new theme or is that something new ?

This sounds like an existential theme of your diagnosed OCD. This was a huge part of my own experience, and what my first novel is about! See http://www.jackieleasommers.com/truest.

With your OCD, do you ever feel that you’re wearing a mask everyday?

Not anymore– but before, YES YES YES.

I used to talk about this with high school students in the midwest, and I would read this poem aloud.

I’ve been struggling with ‘Pure-O OCD’ for a while and because my compulsions are almost exclusively mental, I’m afraid I’ve been automatically engaging the negative sensations associated with the thoughts I get. Although I know the thoughts are very irrational, I can’t seem to be mindful enough to sit with the negative emotions and not have them affect my mood. Little by little, over the years the thoughts are triggered by almost any activity I’m involved in and I feel like I’m running around in a circle and not making much progress. Activities and events that are supposed to be enjoyable are viewed by my brain as hurdles and obstacles to overcome. As far as CBT goes, I tried following the 4-step method by Dr. Schwarz which help a little to put me in the right mind set but I haven’t had much sustainable success. Being a Christian, I feel like I’m wasting time giving in to the negative pull the thoughts I get have on my behavior, which in turn, rob me of valuable time spent acting as a true follower of Christ. Based on your experience with Pure O, what would you say is the best CBT method to effectively manage it? Is it ERP or mindfulness, or a combination of both? Thank you

While I know a lot of OCD sufferers who practice mindfulness, the #1 treatment recommended by all OCD experts is ERP (exposure and response prevention) therapy. Your story sounds so, so, so, so similar to my own. I went around in circles for 20 years before doing ERP. After just 12 weeks of ERP, I have had tremendous freedom, peace, joy, and spiritual growth for the last 9 years. You can do this!

I hope you’ll take the time to read my post about Post-ERP Spiritual Growth. It really summarizes all the healthy changes that came about in my life and faith after treatment. Blessings!

I feel like I might have OCD..maybe ROCD for a while, but that cleared up so I’m unsure about that. I’m 13 years old (a girl) and I think I have been dealing with hocd since the end of 6th grade (11 years old). I have been with my boyfriend for 7, almost 8 months. This hocd is getting better…I think. I always feel like there is another person in my mind telling me that I’m gay. I sometimes don’t feel as disgusted as I usually do when that happens, and that scares me even more. I wish I could tell my boyfriend, but I feel like he would think I actually am gay. Also, Recently i have the tendency to look at girls’ butts and boobs! Is this normal? Is it not hocd? It bugs me so much, and I feel so disgusted and guilty. I’ve never wanted to kiss, date, or do anything sexual with a girl. Whenever I see a girl, I think “she’s pretty.” And then I start questioning myself. And I think “is she attractive? Do u want to do stuff with her?” And soon it calms down. But it comes back as quickly as it goes. It’s so scary. I want it to go away for good. I told my dad two years ago when it wasn’t as bad. So he doesn’t know the full story. My mom knows and I told her recently. She doesn’t understand how horrible it is. I don’t want to tel her everything I question and feel because I don’t want her thinking that I am gay. Even though she would be fine with it. But I’m not. I want that therapy. I’m on medication for anxiety, but it’s not helping too much. This hocd causes me anxiety and depression. I went through a really bad period of this about a month ago, for two weeks. I wanted to die, and I’d use my nails to scratch myself. I don’t know what to do. I wish I could tell my parents, friends and boyfriend, but I don’t know what they would think. Please help me. I want an OCD free life.

Oh sweetheart, please read my answer to the first question above. I think it will help you. Consider sharing this post with your parents. ERP works; it truly does. You are thirteen and have so many exciting things ahead of you– your whole life! The earlier you treat OCD, the sooner you can get to enjoying things again. If you really feel like you can’t tell your parents about your OCD, and if you’re driven, you can treat it yourself at home, using one of the books listed in this post. Don’t give up, honey. Gosh, I can remember being in the same hell that you’ve been living in when I was your age. It feels so horrible and hopeless and exhausting. But you won’t be there forever. ERP will help. Hang in there.

Want to know more about consequences of years of compulsive behavior and thinking haunting life…even after ocd is gone

This is a really good question, one I’ve not been asked much before.

First things first, OCD is very rarely ever gone. Except in the case of a miracle, OCD is a chronic disorder that a sufferer has until death. That said, ERP therapy can subdue it to the point where it feels gone, which is just about as good as the real thing, right?

I’ve written a pretty detailed post about remission and relapses here. While I think it will answer an aspect of your question, the spirit of your question seems to be: what lingers?

For me, not much. (Thank God!) OCD has little to do with my daily life anymore. That said, there are seasons (and in fact, I’m in one right now) when it is like opening a rarely used door in my life only to find that OCD has actually been chilling out there for years, just waiting for you to reenter that old room. (For me, it’s dating. I haven’t dated in a while, and so I haven’t had to deal with the whole ROCD thing. It’s okay. I’m battling it, and I have all the confidence in the world that I can subdue it because I’ve done it successfully now for nine years.) For me, the 12 weeks of ERP therapy I underwent had a far longer-lasting influence on my thought patterns than the 20 years of obsessions and compulsions that came before. It is that powerful. Learn more about ERP at http://www.jackieleasommers.com/OCD.

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.)

 

OCD and suicidal thoughts

Recently Janet at the OCDtalk blog posted about her friend whose obsessive-compulsive son had just committed suicide.  The post broke my heart.  It reminded me of earlier this fall in Boston where I met Denis Asselin, the winner of the International OCD Foundation Hero Award.  Denis’s son Nathaniel, who suffered from intense body dysmorphic disorder (on the OCD spectrum), took his own life in 2011.  It was beautiful but devastating to listen to him talk about his beloved son.  My heart is heavy as I think about these families, now missing an important member, and about the horrific pain that these young men were experiencing that made them see no other way out.

It’s a dark, heavy topic, but tragically important to discuss.

OCD is so often thought of as simply being neat or orderly– or sometimes even anal retentive about certain things.  Media portrays obsessive-compulsive disorder as a quirky, nitpicky, and sometimes comical disorder, but let me level with you: OCD is debilitating, devastating, and torturous.

Can you imagine feeling nothing but sheer, unadulterated terror for days, sometimes weeks, on end?

I remember some of my darkest, hardest, most terrifying days.  I lived in the Brighton Village Apartments with Becky and Tricia.  During the day, I was given the small grace of suspending my obsessions– at least enough to make it through work (most days– not all), for which I am grateful.  In the evenings, I would return to our apartment, where I would drown in an ocean of terror.  My soul felt untethered, lost, condemned; I felt the hot, ugly breath of hell on my neck all evening.  I felt unforgiven and completely cut off from the God I wanted so desperately.  (It is making me cry right now as I write about those dark days.)  And the torture of not knowing— heaven or hell?  saved or condemned?  found or eternally lost?  heard or ignored?– was the worst kind of mental anguish.

Those apartment buildings were built like an X, with the pool and laundry facilities at the center where all four wings came together.  I remember– and this is not an isolated event but something that happened every time I was in that third-floor laundry room– I would look over the balcony down to the first-floor pool area, usually empty, and I would thinkIf I threw myself off this ledge head-first, I would finally know: heaven or hell.  I would have my answer, instead of the torture of not knowing.

But what if the answer was hell?  I couldn’t hurry that on.  What I wanted even more was annihilation— to cease to exist.  I craved oblivion.  That is true pain for you.

I realized that I was already in hell– just of a different stripe.  I was living like a condemned person, in TERROR and heartache and loneliness, and in constant combat with the blasphemous thoughts that plagued my mind.

Most people wouldn’t have guessed it.  I smiled a lot at work.  I even managed to fool those closest to me who knew the anguish I was experiencing.  But I would look over that balcony at the hard floor, and I would think about it.  OCD is that devastating.  I believe obsessive-compulsives (even those who take their own lives) are some of the strongest people you will ever meet.  They fight a constant war.  It is no wonder to me that many want to lay down their weapons and surrender.

And yet, here I am, eight years later, happy and healthy and secure in my faith, enjoying life and friendships and a growing relationship with Jesus Christ.  I am not tormented by my own thoughts, and uncertainty isn’t anguish any longer.  I want to gently take the faces of the anguished obsessive-compulsives into my hands, stare them directly in the eye, and tell them, There is hope.  There is help.  It doesn’t have to stay this way.  I would hug them and cry with them and personally drive them to my cognitive-behavioral therapist.  I was once where you are.  Follow me to freedom.

If you are struggling today with intrusive thoughts, obsessions that plague you, compulsions that take over your life, THERE IS HOPE.  I promise you.  This is a disorder– just a disorder, albeit a powerful, ugly, life-thieving one.  Follow me to freedom.  There is Truth, and it is not what you are hearing from your OCD.  Rescue is possible.  Follow me to freedom.  Email me.  Joy, happiness, laughter, truth, peace, safety– these may seem like impossibilities, but they can be yours too.

suicide

holidays are hard for some of us

Last year, I posted that Christmas isn’t fun for everyone, and today I am thinking again how that is true.  And not only Christmas, but other holidays too.

Thanksgiving is just behind us, and to be honest, I am glad.  Mine was fine, very lowkey– I spent it with my sister and brother, eating pizza and banana cream pie, watching the Dallas game and hushing my voice when the Cowboys fell behind the Redskins and my brother raged at the TV screen.  It was fun, very chill, lazy, and we all met up at Mom and Dad’s house, even though the parents were in Missouri to see Grandma and the rest of Mom’s family.

But it’s these winter holidays that do me in.  While everyone else is giddy with anticipation, I am anxious mostly for them to be OVER.  Somehow there is an expectancy surrounding the actual holiday, something that stresses me out and makes me just want to return to normalcy.

I think, for me, it’s a combination of the cold weather (it snowed all afternoon in Minnesota on Thanksgiving), the claustrophobia of bundling up in jackets and scarves, real or imagined seasonal depression, and memories of high school, when the holidays were the hardest.

1997.  Thanksgiving.  It was the first real breakdown of my life.  I can remember it like it was yesterday and not fifteen years ago.  Was God real?  How could anyone ever really know?  And if I didn’t know, then wasn’t I hellbound?  (Such a paradox, I know– if there was no God or heaven, then there would also be no hell.)  I was in 10th grade, and OCD was swallowing me whole, and it would still be another seven years before it would even have a name.

I was in Missouri with the rest of the family, breaking away from the games and conversation and cooking upstairs to retreat to Grandma’s basement, lock myself in the bathroom, and sob.  The ground had been taken from underneath my feet, and all I could do was weep– all while hiding it from the rest of the family, all those happy Christians upstairs, secure in their beliefs.

I can picture myself now, doubled over on the bathroom floor, lost and sad and scared and not understanding that God Himself could supercede my disbelief and make Himself known to me.  It was a dark year that followed.  I was scared of everything, especially of dying without knowing that God was real.  I held my breath when I’d pass a car on the highway, knowing I was inches from my death– and maybe eternal death.

OCD, you thief.  I hate you with such intensity.

For years after that, I could not return to Missouri without being triggered into a complete relapse which would take weeks to recover from.  Once I went to college, I refused to return.  I wonder what my mom’s side of the family thought– if they wondered if I was stuck-up or selfish for not making that 11-hour drive to see them.  It was only once a year, for goodness sakes.  They didn’t know any of the background, didn’t know the way that just crossing that state border into Missouri had become the instant switch for me to question my faith.

Christmas stumbled along after Thanksgiving, and it was just as hard.  And so, these holidays over the years cemented themselves into difficult seasons that I would have to survive.  And even though November and December are nothing like they were even ten years ago, those memories are strong.

I know there are a lot of people out there who will have such a hard time this season, those of you who have Christmas hang over you like a stormcloud, who will breath a sigh of relief when you return to “life as usual” on the day after New Years.  I’m so sorry, and I totally understand.  I hope that this year will be different for you– that God will supernaturally supercede your painful memories and depression and general feelings of wrongness, and that He will give you joy in your hearts instead of these.

As Christmas approaches, my prayer for you is this: Jesus Christ, You are the Word that became flesh, a holy incarnation that blows my mind every time I stop to consider it.  Please overwhelm us with the sacred mystery of it all in ways that memories, depression, OCD, anxiety, and other mental illnesses can’t defeat.  Jesus, be the mighty redeemer that You have been and continue to be and REDEEM this holiday season for those of us who need a rescue.  Hold us in real ways that we can feel.  Amen.

the Sons of Korah get it

To me, there are two places in scripture that embody the depression and hopelessness inspired by OCD.

The first is in Luke 23:48-29, which takes place immediately after Jesus has died: “And all the crowds that had assembled for this spectacle, when they saw what had taken place, returned home beating their breasts. And all his acquaintances and the women who had followed him from Galilee stood at a distance watching these things.”  This one is more implied than overt, of course, but I can clearly imagine the deadness in the hearts of his friends as they watched their great hope dangle dead on a cursed tree.

The second is Psalm 88.  I’m drawn toward the Message version, and I used to sob as I read these words, feeling their truth weigh on my heart like the worst kind of pain and loneliness that existed.

God, you’re my last chance of the day.
I spend the night on my knees before you.
Put me on your salvation agenda;
take notes on the trouble I’m in.
I’ve had my fill of trouble;
    I’m camped on the edge of hell.
I’m written off as a lost cause,
one more statistic, a hopeless case.
Abandoned as already dead,
one more body in a stack of corpses,
And not so much as a gravestone—
I’m a black hole in oblivion.
You’ve dropped me into a bottomless pit,
    sunk me in a pitch-black abyss.
I’m battered senseless by your rage,
relentlessly pounded by your waves of anger.
You turned my friends against me,
made me horrible to them.
I’m caught in a maze and can’t find my way out,
    blinded by tears of pain and frustration.

I call to you, God; all day I call.
    I wring my hands, I plead for help.
Are the dead a live audience for your miracles?
Do ghosts ever join the choirs that praise you?
Does your love make any difference in a graveyard?
Is your faithful presence noticed in the corridors of hell?
Are your marvelous wonders ever seen in the dark,
your righteous ways noticed in the Land of No Memory?

I’m standing my ground, God, shouting for help,
at my prayers every morning, on my knees each daybreak.
Why, God, do you turn a deaf ear?
Why do you make yourself scarce?
For as long as I remember I’ve been hurting;
    I’ve taken the worst you can hand out, and I’ve had it.
Your wildfire anger has blazed through my life;
    I’m bleeding, black-and-blue.
You’ve attacked me fiercely from every side,
    raining down blows till I’m nearly dead.
You made lover and neighbor alike dump me;
    the only friend I have left is Darkness.

I praise God that he faithfully saw me through the very worst throes of OCD, and I believe that he will see me through whatever else lies ahead.  But I have known deep depression, darkness so intense that I could see no escape, terror that ignited my heart with a wild fury.  And he has seen me through it all.

There is hope.  Even though those friends couldn’t imagine it in their wildest dreams as they stared at that lifeless body stapled to the cross, the resurrection was just around the corner.

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