Advocacy & Boundaries

advocacyTwo recent, semi-related questions I received:

  1. Can you give any recommendations for getting involved in the OCD community and doing advocacy work? 🙂
  2. I am getting very drained and upset by certain advocacy interactions. Do you have any advice on how to handle this? 

Getting Involved in OCD Awareness Advocacy

I don’t think I can answer this any better than by directing you to the IOCDF website, specifically this page, which talks about support groups, research studies, OCD Awareness Week, and getting plugged into your local affiliate!

Proper Boundaries in OCD Awareness Advocacy

I am so happy and eager to help people, but sometimes it’s as if they want different answers, so they keep asking things hoping I’ll suggest something easier than exposure therapy. Or something that alleviates their anxiety immediately. Sometimes asking the questions themselves is the compulsion.

Sometimes it gets to the point where it is damaging to MY OWN mental health or the freedom I worked so hard to achieve via treatment.

In these cases, I have to cut it off.

I can’t be a personal, free, on-call therapist. I can’t be a therapist at all. I can provide resources, and then it is up to individuals to act.

So, set your own standards and stick to them. Be kind but firm. Gently point out when someone appears to be compulsively asking the same questions again and again. Sometimes you might have to say, “I can’t reply anymore.”

One thing that has been especially difficult for me is hearing from people who are in crisis-mode. My own therapist pointed out to me that even she– with her master’s in counseling– is not trained as a crisis counselor. Certainly I– with no formal therapy training at all– am not equipped to handle folks in crisis. It is better to recommend the suicide hotline (1-800-273-8255) or suicide hotline chat (here).

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.

Ignorance’s Finest Moment

Today, a friend sent me a link to this quiz; she knew it would fire me up, and it did.

Quizfreak — How OCD Are You?


The creators of the quiz are pretty upfront about their ignorance– but they’re also ignorant of their ignorance!

(Sidenote: where are the “How cancer are you?” quizzes? Because that’s the equivalent.)

I took the quiz, which was all about being clean, being orderly, and quirkiness.

My results?

Cool As A Cucumber – Less than 10% OCD
You’re just going with the flow, huh? Must be a nice life. Grass a little too long? Hair a little out of place? No big deal. Alphabetical order? Who cares? Life’s too short to worry about that stuff, right? Kudos to you for worrying about the “big picture”, but you probably should make your bed.


ignorance 2

I know my comment is just a drop in the bucket, essentially shouting into the void … but it’s the best I can do in the fight for OCD awareness.

We have so far to go, friends.

But I take heart. I’ve seen many, many of the people in my network over the last 5-6 years becoming more educated about OCD and speaking up to educate people who glibly toss around phrases like “I’m so OCD.” We have so far to go– but we’re going.

If it doesn’t hurt, it’s not OCD.

Let’s be real here.  Almost everyone has a quirk or two.


Some people have to organize their shirts by color.  Some need to dot their i’s a certain way.  Some have to clean their kitchen in just a certain way.  Some always double-check the front door before they go to sleep.

Quirks.  Quirks, I tell you!

Unless …

You feel that a disorganized closet is going to ruin your day, your week, or even your life (and you will panic and feel sick over it until you fix it).  You think that if you don’t dot your i’s just so it might mean that something bad will happen to your family.  You think that if you don’t follow a particular routine in cleaning, you (or people you love) are going to get really sick and probably die.  You think that if you don’t check the front door, a murderer will certainly get inside, kill your entire family, and it will actually be all your fault.

Those are just some examples off the top of my head, but my point is this: if it doesn’t hurt, it’s not OCD.  

In fact, it’s built into the very definition: OCD is an anxiety disorder characterized by intrusive thoughts that produce uneasiness, apprehension, fear, or worry; by repetitive behaviors aimed at reducing the associated anxiety; or by a combination of such obsessions and compulsions.

I was recently on a web forum that was asking “What minor OCD quirks do you have?” and the answers amounted primarily to superstitions and quirks:

* I feel naked without a pocketknife handy.
* I just have to snip or pull loose threads on clothes or buttons.
* I tap my pockets to make sure my keys are there.
* I fold my dollar bills face-in.
* I hate it when someone else uses my pillow.

Now, don’t get me wrong.  These may all very well be true for these people– but I didn’t get the impression from these forum users that if they didn’t do these things, they would spiral into tumultuous anxiety that makes you believe things will never be okay again.  That is OCD.

It’s fine to have quirks; they can even be funny!  But please call them quirks.

OCD is an anxiety disorder.  It ruins people’s lives.  It steals joy from them.  It gives them a sickening feeling of terror.

Please don’t feed into the misrepresentation.  You are not “so OCD” just because you organize your sock drawer.  If, on the other hand, you believe that something terrible will happen if you don’t organize it just right, and if the organization and reorganization of your drawer seems to be adding to your distress, well, that’s another story.

Be informed.  And compassionate.

Don’t label something cutesy and funny as “OCD” — OCD is anything but.

OCD Awareness Week

This is OCD Awareness Week.  It is my great hope that this blog is chipping away at the misunderstandings about obsessive-compulsive disorder.  These are truths I know:

* OCD is a thief.
Obsessive-compulsives are not alone or crazy.
* Although there is currently no known cure for OCD, there is an incredibly effective treatment for it– and tools that keep it well in-check!
* The general public still doesn’t understand OCD, which is much more than just being a “neat freak.”
* Obsessive-compulsives are some of the bravest and most compassionate people I know.

Care to add some truths?  Leave a comment!

CBT advocacy

I am a huge, huge, HUGE proponent of cognitive-behavioral therapy (also known more specifically as exposure and response prevention therapy), which gave me back my life.

I wrote a story called Lights All Around— fiction that sings the praises of CBT.  Even though I had already experienced CBT, it wasn’t until I fictionalized my experiences that I felt like I really understood what exactly went on during therapy, the reprogramming of my brain.  The scenes that I am hoping to share during OCD Awareness Week detail the moments when CBT and its premise finally clicked.

If you haven’t voted for my entry “Tipping Point” yet, will you take 3 seconds to do so right now?  Just go to!  I appreciate you!!  (Which 2-3 friends could you ask to vote for me today?  I’d be so grateful!)

“Tipping Point,” my entry

If you like what you read below, then please mosey over to to vote for my entry!  Voting closes on September 7th, so please don’t wait!!

That Saturday, I went to cognitive-behavioral therapy like a disgruntled cobra, noticeably agitated, ready to strike.  I shifted uncomfortably with each of Dr. Foster’s normal questions and answered in short, sharp responses like a fence made of spikes.  “Is there something wrong?” Dr. Foster asked, setting down his legal pad on the coffee table between us.  He folded his hands in his lap, and I despised him.

“Yes,” I said, my face on fire.  “I can see where this is going, and I don’t think I can do it.  And if I can’t do it, if I’m going to fail anyway, then I want to stop now.”  I crossed my arms across my chest; then, realizing it probably made me look childish, clasped my hands in my lap instead.

He leaned back in his seat.  “Where do you think this is going?”

“You’re going to ask me to swear at the Holy Spirit.”  I could not meet his eye.  My mind raced as it recited its usual mantra—Father God, I love You; Father God, I love You—my talisman against blasphemy.

“Maybe,” he said.  “But not this week.  Can we focus on this week first and cross other bridges when we come to them?”

I snorted out a shock of air.  My right leg began to shake, which thoroughly annoyed me.  “What’s the point if, in the end, I can’t finish the job?”

“You don’t know that,” said Dr. Foster quietly.

“I know that,” I countered as my voice climbed higher.  “I’ve considered it, and there is no way I can do that.”

“I think you should just focus on your current assignment.”

“I can’t,” I said.  Didn’t he understand that there was no point to torture if the end result was not healing?  “All I can think about is that this is the next step.”

“Well,” said Dr. Foster, leaning forward, “I’m not actually sure we’ll need to get to that point.”  I looked at him, sideways, warily.  “I’m not.  I’m seeing how things go.”  I swallowed.  Outside his window, the sunlight battled hard behind the cloudy sky but couldn’t break through.  “For now, when you have your intrusive thoughts, I’m asking you to try to embrace them.”

I can’t,” I repeated.  “I can’t think—that—toward the Holy Spirit.  I really can’t … and I think that might be the community standard in my church.”  I was using his own terminology as a spear, frantically poking holes.  What had I been thinking, attempting CBT in the first place, which was shaping up to be the equivalent of toying with an afterlife toggle?

“Then,” he said, “what I want you to try is this.  When you have an intrusive thought, I want you to think, ‘My OCD is making me think’—he held out his hands—“‘this’—whatever it is.  And name it.  Say it in your head.  It’s a step removed from what I’d like you to be doing, but it might work for you to approach it that way.”

I doubt it.  I pressed my lips together, still sitting rigidly.

“Can you try that this week, Neely?  Creeping toward it?”

“I don’t know.”  My voice was like ice shards.

He pointed to one of his wooden coasters, which was sitting on the coffee table between us.  Just like the others, it also had a quotation etched into the wood, this one from from Antoine de Saint Exupéry: “What saves a man is to take a step.  Then another step.”

“What saves a man is grace,” I spat.

For the briefest moment, the corners of Dr. Jonathan Foster’s mouth hinted at a slight grin, but a second later, I thought I must have imagined it.  Except for his eyes.  His eyes looked at me as if he had a secret, as if I’d said something funny.

I hated him in that moment.  My face burned with anger as I stood up to leave.  “I’m not listening to that thing again,” I said.  “CBT has been the biggest mistake of my life.”

“Neely,” he said to my back, “I hope you’ll come back next week.  I’ll leave you on the schedule.”  I did not turn around, and Dr. Foster did not get up from his chair.  I felt only the tiniest pinprick of pleasure knowing that I’d staged a coup.  Resentment piled like an avalanche behind me as I closed the door sharply on a room of awkward, advancing silence.


I stopped at my best friend Charlotte’s studio apartment to explain why Dr. Foster was the worst person alive and the exact wrong person for his job.  “I mean, how is someone supposed to confront her biggest battles, her deepest fears, if Dr. Foster cannot even be sympathetic for one minute?  I just want my talk therapist again!  I want her to tut-tut and to pray for me and tell me stories about her babchi and to tell me what’s true and what’s not.”

I seethed about the quote on the coaster and about my rebuttal that men are saved by grace.  “And then,” I said, “he didn’t smile, but he almost looked like he wanted to!  And I just about had a meltdown!  It was like he wanted to laugh at me.”

Charlotte offered her own knowing smile.  “Neely,” she said, “he probably did want to!  He had a lot more self-restraint than I would have.  My gosh.”

“What—what do you mean?”

“You argued with him that we are saved by grace—you!  When your OCD has blinded you to grace!  It was like an atheist saying, ‘Let’s pray’!  Honey, come on, give the man a break.  It was a completely ironic thing for you to say in that moment.  Can you see that?”

I wanted to argue, but I was just so worn out.  I exhaled deeply.  “I still don’t like him.”

“That’s fine,” she said.  “And as your best friend, I will dislike him on principle.”

“Thank you.”

“But,” she said, “if this heals you, I will officially revoke all dislike and fall at his feet in gratitude.”

I couldn’t even crack a smile.  “Char, it can’t.  I’ve already failed.  I’m not even doing it right.”  I put my head in my hands, frustrated.  “I’m supposed to be approaching my blasphemous thoughts head-on, and I refuse.  I’m wasting my time, going through torture for no reason, and I’m just done.”

“Well, hold on now,” she said.  “You say ‘head-on,’ but Dr. Doom said you could side-step, right?  What’s that look like?”

I sighed again.  “It’s where I say—or think, I guess—‘My OCD is making me think blah.’  Fill in the blah with whatever bad thought it is.  Probably cursing at the Spirit.”  Father God, I love You.  Father God, I love You.  Father God, I love You.

            “So why not do it?” she said, glancing at her textbooks.

I ogled at her.  “What?”

“Why not do it?” she repeated, this time looking at me.

“Because it’s blasphemous; because it’s sinful; because it’s unforgivable.  It will condemn me to hell.”  I half expected her to blink her eyes as if coming out of a trance.

“You’re not actually saying those things, though,” she pointed out.  “It’s like, well, let me think … it’s like if I were to say to you, ‘I heard a woman at the mall say, “God is not good.”’  I didn’t actually say God is not good.  I was telling you that a woman at the mall said it.  But at the same time, I was able to say it out loud.”  I continued to stare at her.  “You know?  It wasn’t my personal opinion or even a statement to God, just an observation.”

An observation.  I let the idea roll over my brain.  “It sounds risky.”

“Which is the point, right?”


Charlotte had taken most of the venom out of me.  I kept thinking of her summation—how the side-stepping of CBT wasn’t stating a personal opinion or even a statement to God, how it was nothing more than making an observation—and of Dr. Foster, his hands held out, palms up, as if in offering.  “My OCD is making me think this,” he’d said.  “Name it.  Say it in your head.”

But the concept still unnerved me.

Mr. and Mrs. Cook, the newlyweds, invited me over for dinner on Sunday evening.  Stella—her curls somehow managed into a Swiss braid—attacked me with a bear hug that made it seem more like her honeymoon had been two months and not just two weeks.  “Gosh, I’ve missed you!” she wailed.

While we ate dinner, my mind kept flitting back to what Charlotte had said—what Dr. Foster had said as well, only Charlotte so much better.  It’s just an observation.  I ran the idea by the Cooks.  “Okay, this is random.  Help me to think of this right,” I said to them while AJ passed around a plate of baked potatoes.  “If Person A says to you, ‘Person B said you’re an idiot,’ which one do you get mad at?”

“How did Person A say it?” asked Stella, thoughtfully twirling a green bean on her fork, not at all thrown off guard by the arbitrary inquiry.

“Softly, pained, regretfully.”

“Then I get mad at Person B,” she elected.

“You don’t shoot the messenger,” added AJ, looking a little confused.

“Neely has OCD,” Stella said, as if those three words explained everything.

            I am the messenger.  OCD is the one with the message.  The statement—the blasphemy—it’s not mine.  It’s not my opinion.  I am only making an observation about what OCD thinks.  The separation sounded spectacular.

“So—the wedding.  How do you think it went?” I asked, changing subjects.

“Ah, I think this is the part where you two go to the couch to talk, and I stay here to do dishes alone,” said AJ.

“Isn’t he the best?” said Stella, getting up from her seat, then leaning over and giving him a kiss on the cheek.

“The best,” I said, and Stella put her arm through mine and dragged me out of the kitchen into the living room.  It looked like a whole new house since AJ had moved in.  His furniture had replaced hers.  The bookshelves that had been full of Jolie Brightman and Edna St. Vincent Millay were now overcrowded with graphic design books on typography and design theory.  A new large abstract painting hung above the fireplace mantel—a chaotic mix of what looked like various colored bulls-eyes.  The most noticeable difference came when we sat down and a cat the color of ashes jumped up onto Stella’s lap, as if he’d been waiting for her.

“Henry,” explained Stella.  “AJ’s brother took care of him while we were up north and brought him over here last night.  We thought it would take him a while to adjust to living in a new place, but, well …”  She nodded toward her lap, where Henry sat purring as Stella stroked him.  She nodded toward the painting above the mantel.  “What do you think?” she asked.  “My feminist club girls from college got it for us.  It was purchased from an artist who mixes her own colors, applies paint to her breast, and strokes the canvas with it.”

“You’re joking,” I said.

Stella’s eyes were merry like Santa’s.  “I’m not.”  We both laughed.

“You’re married,” I said, a little in awe.  “You’re roommates with a boy.”

“Yucky,” she said, wrinkling her nose, which pushed the bridge of her pink glasses up.  Then she laughed and hit me lightly on the shoulder.  She reached up into her hair and started pulling out bobby pins, letting her curls fall to her shoulders.  Henry looked affronted that the petting had stopped.  “Oh relax, will you?” she said to him.

I sighed.  “I can’t believe you’ve only been gone two weeks.  Behavior therapy has been awful,” I said surprised at my composure.  It shocked me every time that life could return to normalcy.

I explained to her my fear that CBT was a waste if I couldn’t finish it.  “So, Dr. Foster wants me to side-step,” I said.  “That’s why I was asking tonight about shooting the messenger.”

She nodded.  “That makes sense.  So, you’re supposed to say what?”

“That OCD is making me think … whatever.”

“Totally.  Yes.  And this will heal you?”

“That’s the goal.  I’m not convinced.”

“You’ve got to do it, Neels.  I know you can.  This is a great way ‘out’—I can totally see where you wouldn’t want to actually curse toward the Holy Spirit—but if your head is attempting to do that all the time anyway, then just reporting that inclination to God doesn’t seem like a stretch.”

Reporting … I liked her word choice.  It seemed so passive, so mild.  So opposite of blaspheming.  Confidence was building in me.  I couldn’t describe it exactly, but it felt a little like adding weights to the soles of my shoes, as if it would take more than a breeze to topple me.

I am the messenger.  OCD has the message.  I am only making an observation.  I am reporting an inclination. 

The statements kept repeating themselves in my mind, over and over.  And they were making sense.  It all seemed so logical, so black and white.  For the first time in years, I felt like a person with a disorder, a person oppressed, a victim instead of a monster.

After I was home from the Cook household, I went into my bedroom, lay down on my bed, put my earbuds in my ears to listen to the horrid audio track that Dr. Foster had recorded for my exposures.  My hands were shaking, and my face felt tight, as if I would never be able to wrench my jaw open again.  My shoulders were tense and felt thick as slabs of beef.

“Okay,” said Dr. Foster’s voice.  “You wake up and immediately you have a blasphemous

thought.  Something that relates to the Holy Spirit, and you’re thinking something horrible and disrespectful toward the Holy Spirit.  And you don’t do anything about it.”  A familiar cadence, a recognized tone by now.

My chest was as tight as a drum, my heart racing like an executioner’s drumroll.  It was that familiar feeling of alarm.  I stared at the ceiling, my heart thumping in my chest, and when the thought came, I altered it slightly.  Very slowly, as if I were watching each individual letter be typed on the ceiling, I thought, My OCD … is making me think … “fuck You” toward the Holy Spirit.  I swallowed hard.  Had it been wrong?  Was it unforgivable?  God, don’t shoot the messenger.

Dr. Foster’s voice droned on.  “You don’t say a prayer; you actually say, ‘I’m gonna take that risk.’  You say, ‘Fuck it.  I don’t care.’  And this stays with you the rest of the morning and sets the tone for your day.”  My OCD…  is making me think … “fuck You, Holy Spirit.”  The room was silent, still, the bed beneath me warm and soft.  The statement—thought as a message from OCD—was the very one that I’d been frantically trying to avoid for years and years.

The audio track continued, but it was in the background for me.  Was I going to hell?  I reminded myself that I didn’t really say it or think it, but that OCD was inspiring it in me.  I felt threatened; the panic remained.  I continued to stare at the ceiling until the track ended.  OCD has the message.  The blasphemy is not mine.

But I fell asleep a lot more easily than I’d have guessed—and my dreams were not troubling, not even memorable.

OCD Awareness Contest Finalist!!!

OH MY GOODNESS!  Friends, I just found out that I am a finalist in this year’s OCD Awareness Week contest!  Will you please vote for my entry “Tipping Point” at the following website so that I can win a trip to BOSTON to read it?!!!  I would DIE OF DELIGHT!  You can vote here:

Just click on the vote link, and make sure you vote for me– share this will your friends please!  I have been an OCD awareness advocate for years, and this would be a dream come true for me– to combine writing AND my advocacy in one event!  PLEASE VOTE AND ASK OTHERS TO VOTE TOO!