Being Me with OCD by Alison Dotson

BeingMeWithOCDI first connected with Alison Dotson through the International OCD Foundation blog, where we realized that we were both from Minneapolis and made plans to get coffee.  I can still remember that first in-person meeting at Dunn Bros, one of those lovely times between two obsessive-compulsives finding joy and relief in saying, “Me too, me too!”

Alison’s book– Being Me with OCD— is aimed toward teenagers and young adults, but I think its audience is much wider than that.  It’s incredibly well-written, chock full of helpful information, and– most importantly, I think– it’s like sitting down with a friend.  While reading it, I kept thinking of my first meeting with Alison.  Her comforting, empathetic voice comes through so strongly in the book that you feel like you have a friend, a cheerleader, right beside you.

The book is part-memoir, part self-help, and is sprinkled throughout with personal essays from teens and young adults who offer wonderful insight into a variety of areas.  OCD is a strange beast in that, while it works the same way for most people, it manifests itself differently for each person, and the personal essays help the book touch on areas that haven’t been a part of Alison’s own personal journey with OCD.

I deeply appreciated her approach to medication.  I also loved that she dedicated considerable time discussing exposure and response prevention, even though she never underwent ERP herself.  Alison also spends time talking about overcoming stigma.

All in all, a great book for teens, young adults, or any age!  The best part is finding someone who gets it,
someone brave enough to share, someone on your team.

Read an excerpt. Buy the book on Amazon. Follow Alison’s blog.

OCD & Faith

I was recently asked how my faith survived 20 years of abuse at the hand of OCD.  This fellow sufferer wondered how I reconciled/justified my continued believe in God after so much hurt and such a sense of betrayal.

It’s a great question.

I am a Christian, that is, I believe that Jesus Christ is God’s only son, that he came to earth to rescue men, died on a cross on a Friday, and rose again to life the following Sunday.  

It’s actually the story of the cross and the resurrection that have allowed me to cling to my faith.

The agony of the cross shows me that Jesus understands my suffering; we identify with one another. And the victory of the resurrection prompts me to have hope in my suffering, knowing that only a weekend separated the worst story from becoming the best; I am filled with hope that, just as I identify with him in his suffering, I will also identify with him in his victory.

The truth is that without the gospel of Christ, it would be difficult for me to justify my continued faith.

 

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

cross and resurrection

The Dreadful O of OCD

My friend Janet over at OCDtalk recently blogged about how, so often, all people know of obsessive-compulsive disorder are the visible compulsions, as opposed to the invisible obsessions.  And back in November, The Atlantic also posted about the debilitating nature of obsessions.

As I’ve said before, “If it doesn’t hurt, it’s not OCD.”

OCD begins with obsessions.  Compulsions are actually just a monstrous side effect of OCD.

Source: deviantART "Torture" by eWKn

Source: deviantART
“Torture” by eWKn

Compulsive hand-washing is hard to hide.  Hoarding, definitely.  Even repetitive reassurance-seeking and confession (compulsions of choice for a Pure-O) are easy to notice once someone points it out to you.

But it’s harder to see the obsessions that are driving them.

Imagine the deep horror of constantly imagining you’ll hurt someone you love.  Or the intense mind-screw of questioning a part of your identity that you’ve always gripped tightly.  Or feeling as guilty as a rapist, a pedophile, or a murderer … when you haven’t even left your room.  You know that wrong feeling that you sometimes get to which you can never find the words to describe it except for that it’s just wrong?  How’d you like to feel that every waking moment?  Obsessions come hand-in-hand with such intense anxiety, horror, and guilt that obsessive-compulsives feel they cannot bear them.  Hence, so many compulsions.  And, devastatingly, suicides.

That, my friends, is why I get upset when people say things like, “I’m a little OCD; my handwriting has to be perfect” or “If my socks don’t match, it bugs me so bad.  I think I’ve got a touch of OCD.”  It feels like someone is comparing their hangnail to your amputation.  Does that make sense?

So many people in the OCD community have not yet found their voice, and that prompts me to be even louder.  I know no one likes the person who is so easily offended.  Heck, those people generally annoy me too!  But I’m reacting on behalf of a broken, abused, tortured community who– this is heartbreaking– believes themselves worthy of only brokenness, abuse, and torture.

So I choose to be loud about it.

Thanks for understanding– or trying to.

Just One Dose

I had such a hard day recently– my anxiety levels were higher than usual (“usual” being not too bad for the last four years– thanks, ERP!).  I felt this strange depression, a strong desire to sleep, and a hovering sadness that wouldn’t lift.  My blood pressure felt through the roof, and the stress took a very physical toll on my body: by the time I crawled into bed for the night, my shoulders felt like cement blocks and my arms were throbbing with pain.

I realized that– while racing out the door that morning– I had not taken my Effexor XR or my Prozac.

Just one dose missed, and it was so terribly evident.

I have acknowledged that I may be on medication for the rest of my life, and I’m okay with it.  In fact, I’m quite protective over my right to take medication.

I read this awesome related post on the OCD Foundation’s blog recently.  And it turned out that Alison, the blogger, lives in Minneapolis … so we got coffee.*  Love my OCD community!

* And since then, we’ve accepted new roles at the Twin Cities affiliate of the International OCD Foundation (I’ll be the communications director)  … and have an event planned in Minneapolis for OCD awareness week!  Exciting!

prozac morning

Christian Culture’s (Sad) Response to Mental Illness

It’s in the Title: Mental Illness is an Illness

Salads and sandwiches and a shared mental illness, all of it on the tiny table between us.

“There is help for OCD,” I told her.  “The most effective treatment is cognitive-behavioral therapy.  Between that and my medication, I got my life back.  I know you can too.”  (The evangelical zeal I have for this particular therapy reminds me of the way I love Jesus: both took me from darkness into light, both make me want to throw parades in their honor.)

“Oh, I don’t know,” said my friend, poking at her salad with a fork, sounding hesitant.  “I think before I take any extreme methods, I want to just pray about it more.  I know that God can bring me through this.”

I wanted to say, But you have been praying about this for years!  I also believe God can bring you through this—and I am telling you how.

There is a pervasive and unhealthy attitude in the Christian culture toward mental illness.  Many believe that one should be able to “pray away” a disorder.  Some think that mental illness is, quite simply, spiritual warfare; some think it’s the result of unresolved sin issues.  One of my friends has said before that a real Christian can’t be clinically depressed.  I saw a Facebook status once that read, “Depression is a choice.”

These sentiments light a fire in me, especially for the way that they marginalize a group of people that are often already more susceptible to guilt.  I know that in my OCD hey-day, I felt continual guilt and severe shame; for someone to intimate to me that these feelings were the appropriate ones would only mean that my Christian brothers and sisters were siding with my disorder—and against me.

Mental illnesses are just that: illnesses. 

friendsGod and Satan can work through them just the same way as they could through, say, cancer or diabetes.  All issues are spiritual issues, simply because we are spiritual beings, but it is not helpful to label a chemical issue with a giant term like spiritual warfare.  To say that a Christian cannot be depressed is like saying a real Christian can’t get the flu.  To say that depression is a choice is like saying strep throat is a choice.

If you break a bone, do you get it set in a cast?  If you learn you’re diabetic, do you take insulin?  If cancer steps into your body, do you pursue chemotherapy?

The answer is usually yes.  Yes—and pray.  (Don’t get me wrong: I’m all for prayer!  And for medical innovation!)

That is why I am unashamed of my OCD, my depression.  Instead, I am proud of my God for seeing me through a therapy as difficult as CBT and for being my strength through five years of side effects in the search for the right medication.

Unfortunately, my friend left the sandwich shop that evening feeling obligated to “pray away” a spiritual flaw instead of feeling empowered to fight illness, in spite of my best efforts.  My voice is being drowned out by the multitude of louder voices of the Christian culture, a culture that should be supporting this demographic, not alienating it.

Satan is the accuser; Christ is our defender.

Recently, one of my blog readers asked me how I could tell when a thought came from OCD or from God, especially because one of my formerly intrusive thoughts was of a Bible verse that seemed to condemn me.  She wrote, “I keep reading that Bible verses spontaneously popping into one’s head is a prime way God speaks to people.”

What a great question.  One I’m not entirely sure I’m qualified to tackle, although I do know that the more I learn about and understand my OCD, the easier and easier it is for me to spot it.  I can recognize its tell-tale voice from a mile away now.  And while I don’t think that OCD = Satan (at all), they are both my enemies and they are both accusers.

Here is the (in flux) conclusion (is that an oxymoron?) I’ve come to:

I guess the big thing is this: when OCD would bring up that Bible verse, it worked like an intrusive thought and brought deep anxiety to me, but with God … his kindness leads us to repentance, not to shame.  The voice of God showers me with kindness, grace, conviction that leads to change … but I don’t think God’s voice is one of shame and accusation. In fact, scripture even tells us that SATAN is the accuser and CHRIST is the one who defends us.

Remember, Satan used and twisted scripture when Christ was going through his temptations, so we know that it’s part of the devil’s arsenal.

frustration4My friend Erica told me something fascinating she’d once heard: “The Holy Spirit does not motivate with guilt.”  Likewise, my incredibly wise writing professor Judy said, “I know the voice of God because that voice invites me to move closer without shame while the voice of Satan fills me with an electric dread that makes me want to hide.”

As always, I encouraged this blog reader to explore Exposure and Response Prevention therapy.  In the four years since my ERP, the voice of OCD has become so easy to recognize.  I finally know my enemy’s voice.

And better yet, I know my savior’s.

 

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.

birdcage2

 

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.

 

 

There’s so much more to OCD than hand-washing …

washing handsIf you use Google Images and search “OCD,” what you end up with is a lot of photos of lame OCD jokes and of soapy hands.  It reminds me just how little the world really knows and understands obsessive-compulsive disorder.  Heck, before my own diagnosis, I myself pretty much thought of it as “that disease where you wash your hands a lot or have to tap the doorknob over and over.”  Insightful, Jackie.

While it’s true that contamination obsessions are a prevalent theme among OCD sufferers (I read somewhere that about 60% of OCD cases deal in this arena), that’s not the only obsessive theme.*  And even hand-washing is often misunderstood.  People just don’t understand that there are persistent, unwanted, intrusive thoughts that are driving the hand-washing or other compulsions.  Compulsions are a response to what I personally think is the darker half of the disorder: the obsessions.

* Other common obsessive-compulsive themes include a need for order or symmetry, hoarding, checking, sexual obsessions (including HOCD, in which a straight person obsesses about being gay, or a gay person obsesses about being straight), religion/morality/scrupulosity (my OCD world!), and aggressive thoughts around harming others or one’s self.  OCD is probably bigger, wider, and scarier than most people ever imagined.

 

my darkest, lowest days

Tonight, I have been thinking about that deep, dark pit and the moments of my life when I was at the very bottom, nowhere lower to go and my head too heavy to look up.  I have been thinking about the things and places that remind me of those times.

You might guess that it was those months after college graduation, when I would wander from the laundry room to look over the balcony to the pool area two floors below and think about what would happen if I let myself fall.

Or maybe that it would be one of those evenings when I was wild-eyed and manic, scream-weeping in the bathroom while my roommate sat outside the door and prayed.

But when I think of myself at my lowest, I always picture myself in the Caribou Coffee in Long Lake, Minnesota.  I’d arrived to town too early to visit Orono High School, and so I stopped into Caribou off of Highway 12 (which has since been re-routed), ordered hot cocoa, and sat alone at a table.  In my car I had been listening to “Spirit” by the band Switchfoot, letting the chorus hammer into me that all I wanted was Jesus … exactly whom I believed I could not have.

Interestingly, the emotion that I seemed to feel the most was this odd, lonely marvel.  Don’t get me wrong– it was not good, as marvel usually is.  It was this dark, lost, inconceivable wonder that I could be so damned and that there was nothing I could do about it.  I sipped at my cocoa, thinking how there was no joy left available to me, no rescue coming, no prayer I could whisper to make things okay again.  A marvel and a sort of understanding washing over me that this was my reality and there was no way out.

sadcoffee2

For years, I could not listen to that song (which truly is a lovely one!) without feeling a stale depression steal over me.  To this day, when I drive by that Caribou, I think to that dark day.  Nothing impressive or strange or particularly triggering had occurred, but it is my lowest, loneliest moment of my life.

I could not have pulled myself out of that pit.  I didn’t even have the strength to lift my eyes.

(Oh gosh, I’m going to start being known as That Girl Who Cries in Barnes & Noble, LOL!)

Jesus Christ rescued me.  He led me to the right medication and the right therapy and carried me out of the pit himself.

In the past couple of weeks, I have gotten several emails from fellow obsessive-compulsives who are in that same pit.  I write this post to say that there is hope– and it’s not in ourselves.

 

 

Tips for Interviewing a Therapist for Your OCD

Janet from the ocdtalk blog pointed me to the International OCD Foundation’s website for this list.  I hope it will be helpful for you as you seek appropriate treatment for your OCD.  I can’t stress this enough: OBSESSIVE-COMPULSIVES SHOULD NOT WASTE THEIR TIME ON TALK THERAPY.  YOU NEED COGNITIVE-BEHAVIORAL THERAPY, SPECIFICALLY EXPOSURE AND RESPONSE PREVENTION THERAPY.

“What techniques do you use to treat OCD?”
If the therapist is vague, or does not mention cognitive behavior therapy (CBT) or Exposure and Response Prevention (ERP), use caution.

“Do you use Exposure and Response Prevention to treat OCD?”
Be cautious of therapists who say they use CBT, but won’t be more specific.

“What is your training and background in treating OCD?”
If they say they went to a CBT psychology graduate program or did a post-doctoral fellowship in CBT, it is a good sign. Another positive is if a therapist says they are a member of the International OCD Foundation (IOCDF) or the Association of Behavioral and Cognitive Therapists (ABCT). Also, look for therapists who say they have attended specialized workshops or trainings offered by the IOCDF, like our Behavior Therapy Training Institute (BTTI) or Annual Conference.

“How much of your practice currently involves anxiety disorders?”

“Do you feel that you have been effective in your treatment of OCD?”

“What is your attitude towards medicine in the treatment of OCD?”
If they are negative about medicine, this is a bad sign. Medicine is an effective treatment for OCD.

“Are you willing to leave your office if needed to do behavior therapy?”
It is sometimes necessary to go out of the office to do effective ERP.