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.)

 

Worth Saying Again & Again

Exposure therapy is the best avenue we know of for treating obsessive-compulsive disorder.

Close up of hand drawing gears mechanism with chalk

ERP (exposure and response prevention) is what every OCD expert will suggest as the frontline treatment for sufferers.

It works.

It’s hard and scary, but it works.

Catering to compulsions is a band-aid on cancer. It treats symptoms. It cuts leaves off a weed.

ERP is chemotherapy. It goes after OCD itself. It digs out the root.

On this blog, you’ll only hear OCD treatment recommendations for:
1. ERP
2. ERP plus praying for a miracle
3. ERP plus meds
4. ERP plus meds plus praying for a miracle.

You can learn all about ERP therapy at jackieleasommers.com/OCD.

Thoughts on Freedom of Various Kinds

I moved yesterday. All went quite well.

I first moved into my old apartment in 2008, right as I started to write Lights All Around, my first novel. Those walls have seen so much, including complete and utter breakdowns, my experience with ERP therapy, the writing of Truest, and the writing of first drafts of two other novels. (Whoa– I wrote four novels in seven years? Sheesh. Had not thought of it like that before.)

The new house is still undergoing renovations, and it’s all a big old mess, but it’s my mess that I own, and I love it. I can see its potential so clearly, and I’m so happy.

Moving means packing and unpacking, and that means finding a million lost things in the dark corners. I’ve found so many things– journals, stories, etc.– that show so clearly the pain of and enslavement to my OCD. Today I read a journal entry dated 2006 that said something to the effect of, “I am still the pot who asks the Potter, ‘Why did you make me this way?’ I wonder if I will ever know. I wonder if I will ever experience freedom.”

I want to tell that girl, Two more years. Hold on.

Of course, that’s my past. I know so much more now, nine years after that journal entry was written. I have joy and freedom and a book deal with HarperCollins. I did the hard work of ERP therapy and reaped all the benefits of it– a whole different life. So, I don’t need to say that to my past self; instead, I will say it to you, you who are enslaved to your own obsessive-compulsive thoughts, who are lost and in slavery to OCD, who wonder if there is a point to it all or if you will ever see the light again:

Hold on. There is freedom available. Hope. Joy. Light. You can learn about ERP therapy here. I pray it will be the key that unlocks your prison, just as it unlocked mine in 2008. Today I find purpose in my past of OCD; I find happiness in daily life; I find freedom– or freedom has found me. Thank you, God.

How fitting to be reminded of my freedom on Memorial Day weekend. I am grateful, so grateful, for every freedom. I remember.

Self-Directed ERP Therapy

???????????????????????????????????????If you’ve spent any time hanging around this blog, you know that I’m a huge proponent of treating OCD with Exposure and Response Prevention (ERP) therapy, which is the best treatment available. It’s the first and only* treatment I recommend.

People often balk at it, which I understand: it’s difficult. Very difficult. People want an easier option. But I wouldn’t recommend a bandaid for a cancerous tumor, and I won’t suggest anything else.

But I’m too embarrassed …

But I can’t afford it …

But there are no ERP specialists in my area …

Those are all very valid reasons for seeking another treatment option, but the GOOD NEWS is that you can do ERP on your own, if you are committed to it, and if you’re willing to work hard.

It’s still important to have an expert guiding you, so please track down one of the following books:

Stop Obsessing by Edna Foa
Amazon | B&N | Fishpond
Freedom from Obsessive-Compulsive Disorder by Jonathan Grayson
Amazon | B&N | Fishpond
The OCD Workbook by Bruce Hyman and Cherlene Pedrick
Amazon | B&N | Fishpond
Obsessive-Compulsive Disorders: A Complete Guide to Getting Well and Staying Well by Fred Penzel
Amazon | B&N | Fishpond

With the help of one of these books, you can be starting your own ERP journey for under $50 (most under $20!).

Read the whole book from cover to cover and do all the exercises. Throw yourself wholeheartedly into pursuing wellness, freedom, and peace. You can have your life back. Believe me. I languished in the hell of OCD for 20 years before just 12 weeks of ERP therapy broke that torturous yoke. This can be your story too.

If you’re not convinced, go to jackieleasommers.com/OCD and read my posts about ERP. Then drop me a comment or an email with your questions!

* I think medication can definitely help too– but ERP is a better option than meds, and in my (non-MD) opinion, meds should come alongside ERP, not ever replace it.

The [Beautiful] Paradox of ERP

paradox of ERP2Exposure and response prevention therapy. ERP.

The hardest thing I have ever chosen to do in my life.

And one of the best.

But that’s not actually the paradox I’m talking about. The paradox of ERP that fascinates me most centers around uncertainty.

The whole point of ERP therapy is to teach someone to learn to live with, accept, even embrace uncertainty. ERP actually re-wires the brain to help the OCD sufferer with this. Before I went through ERP, I wanted to know everything with 100% certainty. Anything less would cause intense havoc in my mind, heart, and body. Because of this intense desire to know everything with certainty, I so often felt gobsmacked by uncertainty. I lived as if, without total certainty, I could barely know anything. Doubt pummeled me like a linebacker. My life was ravaged by uncertainty.

But once I went through ERP therapy and learned to accept uncertainty, the bizarre thing is that my confidence returned. I suddenly felt surety and certainty again– after I realized I didn’t need it.

When I demanded 100% certainty, what I ended up with was often something in the 25-40% range. Or lower.

When I abandoned the need for 100% certainty, I ended up in the 90-99% range. Sometimes less, but usually way, way up there.

That’s weird math. Backward logic. A paradox.

One I love.

99% sure,
Post-ERP Jackie

P.S. If the need to know for sure is ruining your life, you need ERP. Read more about it at jackieleasommers.com/OCD.

P.P.S. I’m a follower of Jesus Christ, and I can’t help but be struck by the similarity of this to “Lose your life to gain it.”

Image credit: Nicu Buculei, modified by me

Co-Morbidity

comorbidDo you know the term?

Co-morbidity is the presence of one or more other disorders co-occuring along with the primary one. For those of us with OCD, our OCD is often co-morbid with depression. The depression seems to usually be a result of the OCD (as opposed to the other way around).

On their website, the Stanford School of Medicine writes:

Patients with OCD are at high risk of having comorbid (co-existing) major depression and other anxiety disorders. In a series of 100 OCD patients who were evaluated by means of a structured psychiatric interview, the most common concurrent disorders were: major depression (31%), social phobia (11%), eating disorder (8%), simple phobia (7%), panic disorder (6%), and Tourette’s syndrome (5%).

They also say:

In Koran et al.’s 1998 Kaiser Health Plan study, 26% of patients had no comorbid psychiatric condition diagnosed during the one year study period — 37% had one and 38% had two or more comorbid conditions. These proportions did not differ substantially between men and women. The most commonly diagnosed comorbid conditions were major depression, which affected more than one-half, other anxiety disorders, affecting one-quarter, and personality disorders, diagnosed in a little more than 10%.

OCD is enough of a beast on its own, but the truth of the matter is that many who struggle with OCD are fighting other demons too.

In my experience, OCD and depression teamed up against me, though, as I wrote before, the depression was secondary to the OCD (in that it was caused by the OCD). Some days I would be full of intense, manic fear caused by OCD, and other days all my sharp edges would be dulled by depression and a feeling that nothing in the world sounded exciting or worthwhile.

I’m so grateful that when ERP helped me steal power away from OCD, the upshot was that depression was defeated too.

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

 

Image credit: Gerald Gabernig

 

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.

Choosing Treatment: a Parable

bandaidOnce there was a man named Mr. Jones.  Mr. Jones found out he had a brain tumor.

Experts told him, “Mr. Jones, you need to have surgery, followed by chemotherapy.”

But Mr. Jones said, “No thank you.  Surgery is hard.  Chemo is hard.  I’d prefer to just meet with someone to discuss my cancer once a week.  Also, I’ll apply a fresh bandaid to my forehead every few days, for good measure.”

“That won’t help, Mr. Jones,” the experts told him.  “You really do need a very specific treatment for your condition.”

But Mr. Jones was insistent: he preferred the easier “treatment.”

So he met with a therapist to discuss his cancer, and he applied and reapplied bandaids whenever he was feeling worried.

It didn’t work.

And the moral of the story is this: ERP is the best way to treat OCD.

 

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

Image credit: F2 Images