Co-Morbidity

Posted on July 27, 2014 by Jackie Lea Sommers

Do 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

Posted on June 8, 2014 by Jackie Lea Sommers

Alison 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

Posted on May 11, 2014 by Jackie Lea Sommers

I 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

Posted on April 27, 2014 by Jackie Lea Sommers

Once 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

I Confess

Posted on February 2, 2014 by Jackie Lea Sommers

I don’t want to admit this to you. I really don’t.

But I’ve made such efforts to be honest with my blogging community, and the wonderful, encouraging reception I’ve always gotten from you, my beloved readers, has continually encouraged me to continue with that honesty and integrity.

So today I’m going to tell you something that might make you made at me. Here it is:

Sometimes I get really frustrated with people with OCD.

Five years of freedom and already I am so quick to frustration. Shame on me, right? Then again, the last five years of my life (post-ERP) have been so absolutely incredible that they make me even more frustrated with those who avoid treatment.

The truth of the matter is this: exposure and response prevention is the best and most appropriate treatment for OCD. Quite simply, if you’re looking for a “solution” to your OCD, then I have it for you: ERP. I hear from a lot of people who seem to want a different answer, and yet my bottom line remains the same: ERP, ERP, ERP.

I know it’s scary. (Trust me, I know it’s scary!) But it’s the right answer, and I’m not going to send you on a wild goose chase when I know the right answer. That would be like me telling you to go get chemotherapy for your gunshot wound or that you need insulin for your broken arm. It’s obvious that those aren’t the correct treatment for the issue, and I won’t do that to you.

Research shows that ERP is the best treatment for OCD. My life shows that a person with obsessive-compulsive disorder can redeem the years he or she lost to being enslaved by OCD. No matter how many times you ask me, I’m going to give the same answer.

There. Got it off my chest. Don’t worry, folks; I’m still here for ya! I aim to be a voice advocating for our quiet and oppressed community. But just how I refuse to aid someone in compulsions, I will also refuse to send you down the wrong corridor for help. I’m doing this with the best interest of our community in mind, I promise.

My heart and energies and motivations rest in leading those in slavery toward freedom. Know that.

The Long Journey … to the Starting Line

Posted on January 12, 2014 by Jackie Lea Sommers

“Cross That Line” by xLadyDaisyx on deviantArt

It is SO HARD for OCD sufferers to be correctly diagnosed and then find the right treatment and a good cognitive-behavioral therapist. In fact, it takes an average of 14-17 years for someone to access effective treatment.

That stat stings my heart. I feel it deeply because of my own personal struggle.

I developed a sudden onset of OCD at the age of 7. I wasn’t diagnosed with OCD until I was 22. I started ERP (exposure and response prevention) therapy at 27. That’s twenty years, folks– fifteen just till diagnosis alone.

Growing up, I just assumed that I “thought too much”– was an “overthinker” and especially sensitive to issues of morality. I didn’t understand that other people were also undergoing the same doubts as I was but were able to move past them with ease. I, on the other hand, would get trapped. The exit door to my brain was stuck shut, so all my thoughts just milled and churned and generated intense anxiety. I didn’t know that others even had the same thoughts as I did, nor did I realize how it would be possible to let such thoughts come and go.

In childhood, I cried all the time. In fact, I cried every single night for three years in a row. I never told my parents about this. I was so scared that they wouldn’t be able to “fix” me that I preferred to just rest in my own sadness, still clinging to the hope that *someday* I could be fixed. As long as no one told me it was impossible, it still felt possible, and even thought I was terrifically sad, I kept that hope as my lifeline.

High school was a beast. I got straight A’s (OCD drove me to perfectionism) and graduated at the top of my class. I was a class clown, and I had some amazing friends. But I battled intense spiritual doubts and lived in great fear. My tenth grade year was one of the hardest of my whole life. Only those closest to me knew it.

My doubts intensified in college. They escalated to a whole new level. Thankfully, I had a solid support system in my new friends (people who remain my support system to this day!). And though they couldn’t understand what I was going through, they loved me.

After undergrad, things fell apart. In a nutshell, I lost my grip on reality– my doubts had grown so large and out of control that I no longer knew if I could trust my friends or my own human experience. Finally, for the first time in my life, someone used the words mental illness with me. It felt shocking.

I was encouraged to meet with a therapist (unfortunately, a talk therapist– not effective for OCD), who also got me in to meet with a psychiatrist, and I was finally diagnosed with obsessive-compulsive disorder. A diagnosis fifteen years in the making.

I spent about a year with that first talk therapist, and it was more damaging than anything else. I finally “escaped” and never again set foot in that clinic. Meanwhile, I was an SSRI lab rat, trying out a slew of various medications to treat my OCD. I eventually went back to talk therapy– this time to a much better therapist, who was a true blessing, although she still didn’t truly understand OCD, and so my therapy included a lot of reassurances. In other words, this kind, amazing woman who loved me was just reinforcing my compulsions. Not good. I also took a break from trying out medications after one stole all my energy and made me rapidly gain weight. I was overweight for the first time in my life– all due to a medication– and have struggled with my weight ever since.

Five years after that initial diagnosis, my psychiatrist was out of ideas. Literally. She asked me what I thought we should do next. I, of course, had no clue. She referred me to an OCD specialist.

This incredible man– Dr. Suck Won Kim– changed my life. He got me onto the right medication (almost immediately) and essentially required that I begin ERP, even giving me the name and contact information for the therapist who would ultimately allow me to bottle up my OCD and put a stopper in it. Dr. Chris Donahue, to whom I’m forever indebted.

Twelve weeks was all it took. In one sense. In another, it took twenty years.

My life was a mix of depression, anxiety, compulsions, “bad” thoughts, and wrongness, and then twelve weeks later, I felt the burden of OCD lift from my shoulders. I was giddy with freedom. Five years later, I still am.

I hear from OCD sufferers every week who are in their 50’s, 60’s, or even older, who are still seeking appropriate treatment. This absolutely breaks my heart.

On the flip side, I’ve had the incredible experience of meeting Maddie, 11, and her incredible parents, who leapt into action almost immediately and got her into ERP within months of her OCD onset. In the same year, she developed OCD, was diagnosed, and was treated. Marvelous!

That’s one of the reasons I blog about OCD. To help people to understand earlier what they are dealing with and to encourage them to seek appropriate treatment (ERP, with or without medication). It still just boggles my mind that in 2013, mental health practitioners still don’t know that ERP is the answer. People get passed around from talk therapist to talk therapist, when the solution should be so ready, so available.

Better than a Bandaid

Posted on December 22, 2013 by Jackie Lea Sommers

“Healing” cancer with a Bandaid is the same as “healing” OCD with compulsions. In short, you’re not healing ANYTHING.

In other words, all those things that obsessive-compulsives do to alleviate the tremendous anxiety they feel? Not helpful. Asking for reassurance, obsessive confessing, reciting prayers and phrases, repeating rituals that make you feel “okay” or “balanced,” washing your hands, etc.– they are just Bandaids plastered right over the cancer of OCD.

To effectively go for the “root” of OCD, you have to resist those compulsions. Exposure and Response Prevention (ERP) therapy is recognized as THE best treatment for OCD.

Skip the talk therapy.
Skip the (many) reassurances.
Skip the rituals.
Skip the confessions.

Go for the jugular with ERP.

A Detailed Post about ERP

Posted on November 10, 2013 by Jackie Lea Sommers

I have written many times about Exposure and Response Prevention therapy, and lately, many people have been contacting me for more details about it, especially how they can do ERP on their own from home.

GIANT DISCLAIMER:
I AM NOT A THERAPIST. NOT EVEN CLOSE.

I am an obsessive-compulsive 31-year-old female who successfully underwent a twelve-week ERP experience four and a half years ago. I say “successfully” because at the end of the twelve weeks, I then spent the next year and a half without obsessions or compulsions. (Can you even imagine? It sounds like a different life, right? It was.) In the three years after that, I have only had a handful of obsessive bouts (probably fewer than five), which I have been able to manage well with my ERP tools and which didn’t last longer than one day. You can gauge for yourself if that sounds like success to you. For me, it has been like happy freedom after spending twenty years in slavery to OCD.

With all of that said, I’m going to give my very best advice in this post.

SKIP TALK THERAPY AND PURSUE EXPOSURE AND RESPONSE PREVENTION THERAPY. Talk therapy (where you spend an hour with a therapist discussing your problems) can actually, in some cases, perpetuate your OCD, especially if your compulsions include confession and seeking reassurance. Your talk therapy sessions will essentially become one-hour opportunities for you to confess to your therapist and seek reassurance from him or her. That is the opposite of what you want to do.

FIND A COGNITIVE-BEHAVIORAL THERAPIST WHO IS SKILLED IN ERP.
Begin by asking him or her questions about the techniques they use to treat OCD. If the therapist doesn’t mention cognitive-behavioral therapy or exposure and response prevention therapy, keep looking. You don’t want to waste your time spinning your wheels with someone who doesn’t know how to do exposure therapy.

WHAT WILL USUALLY HAPPEN IN ERP:
Your therapist will begin by asking lots of questions to get a real understanding of your OCD. Remember, there are several different kinds of OCD, and in order for your therapist to really mold your treatment plan around you as an individual, he is going to need to ask for lots of details. If it seems like he is zoned in on what will cause you the most anxiety, you’re probably right. In ERP, your therapist is looking to trigger your anxiety and then prevent you from doing anything to alleviate that anxiety. (Good times!)

You will probably create a fear hierarchy, a list of various things that would cause you intense anxiety. Then you’ll probably start with the least scary item and work your way up to the top. The top item on your fear hierarchy will probably seem IMPOSSIBLE. Continue anyway. By the time you actually get to that item, ERP may have already re-wired your brain enough to be able to handle it. I need to repeat: focus on the item you’re at, even though the temptation is to stress about the next, scarier item. Your therapist is not going to force you to do anything, and it’s going to be a better experience for you if you simply focus on each individual day and what you have to do that day.

Your exposures will be specific to you, though, in general, if you have contamination fears, you will probably have to interact with things that you deem unclean (in fact, probably with things that really are!). If your OCD is more concerned with order, you may be asked to sit with things out of place. If you have HOCD, you may be asked to read LGBT literature or to look at scantily-clad members of your same gender. If you have harm thoughts or other anxieties that you’re not able to actually expose yourself to, you’ll likely need to do imaginal exposures, which may involve writing graphic stories and then reading them or possibly recording the story and listening to it on repeat.

If you’re doing this on your own (and are not guided by a therapist), I recommend doing the recording. It was more anxiety-inducing for me to listen to a recording than it was for me to quickly read over the story I had written. Make the story bad– the worst things you can imagine. And perhaps opt to use lots of details: instead of just using large, blanket statements like “I am thinking a blasphemous thought, and I will go to hell for it,” try “I think of cursing God, and I know I will go to hell, where I will be lost and alone forever.” Describe it.

The first time you do your exposure, keep track of your anxiety level, 0-100, where 0 is no anxiety at all and 100 meant you were clawing at the ceiling. Then, every time you do your exposure, rate your anxiety level at the beginning, middle, and end of it. Keep doing that exposure until your anxiety level is half of what it was when you first started. Then, you can probably move on to a higher, scarier exposure on your fear hierarchy.

If your exposure (when you start it) is not causing you much anxiety, then chances are you have something a little off. You’ll need to talk to your therapist or think through your exposure to see if you’re hitting the nail exactly on its head. (I read a story once where the OC thought her obsession was one thing, say, worrying that she would hurt her child, but the exposures weren’t causing intense anxiety, so she and her therapist took a closer look at it, and together they realized that her actual, larger fear was that she would never know if she would hurt her child … similar but a little different, enough that they changed her exposure to fit better.) If you have been doing your exposure for a while and the anxiety levels are dropping, then that is a good thing, my friend. That means that ERP is re-wiring your brain correctly.

Keep all your anxiety ratings in one place so that you have a visual representation of how ERP is working as you watch the anxiety levels drop. It may be a while before you start seeing a downward movement. That’s okay. Keep going. In my experience, my anxiety levels didn’t start to drop until about week ten. After that, they plummeted quickly.

ERP is a scary experience, so I do recommend paying the money to see a therapist IF you can afford it and IF the person is well-trained in exposure therapy. If you decide to create your own ERP experience, buy a book that will guide you, such as Stop Obsessing! by Edna Foa or Freedom from Obsessive-Compulsive Disorder by Jonathan Grayson. Talk to your friends and family ahead of time and spell out for them what your compulsions are, asking them to not aid you in these, even when it is difficult. It may be helpful for you to tell them that aiding your compulsions is akin to them being on Team OCD instead of Team You.

Many people choose to pair ERP with medication. I did.

I spent fifteen years with OCD before I was diagnosed, then another five before I began ERP. That was twenty years that OCD stole from me, so when I began ERP, I essentially knew it was my last hope, short of some supernatural miracle. You might not be mentally in that place yet, ready to put your nose to the grindstone and make it happen. You’ll know when you’re ready. Just know this: most obsessive-compulsives I talk to who have gone through ERP say their big regret is not pursuing ERP sooner. ERP is hard … but it is not (not-not-NOT) harder than living daily life with OCD.

And what is happening while you go through these exposures? I meant it when I said that your brain is being re-wired. In this therapy, the brain changes, allowing an obsessive-compulsive more room to live with uncertainty (the root of it all).

ERP gave me back my life. I am happy again, have joy again, love life. I no longer fight a daily battle with my own mind.

Preparing for ERP Therapy

Posted on June 2, 2013 by Jackie Lea Sommers

Lately, I’ve been talking to some brave, amazing people who are planning to tackle cognitive-behavioral therapy (CBT), specifically exposure and response prevention therapy (ERP). I know it’s the right next step, they tell me. Any advice?

Glad you asked. Here are my suggestions as you prepare for ERP.

1. Read and research! Don’t go into this (incredible but difficult) therapy with your eyes closed. I believe that the more you know about what ERP entails and what will be expected of you, the better. In fact, I have a friend who had done enough research on it that he realized only one or two sessions in that he knew more about ERP than the therapist did– instead of wasting time, my friend was able to stop meeting with that therapist and find an expert in ERP.

2. Have an open heart. ERP is not the same as talk therapy. You will be given homework and made to go through exposures that are intended to spike your anxiety. Before I started ERP, my psychiatrist gave me this advice: “Think of a mother, Jackie. A mother would do anything to help her child. You must be willing to do anything to help yourself.” By its very nature, you will be expected to do things that you do not want to do (AT ALL). Do them anyway.

3. Surround yourself with the RIGHT support system. What you need are cheerleaders, people who will be your biggest fans and encouragers. What you absolutely do NOT need are enablers– because they will only be hindering the ERP process. Educate your closest friends about what ERP entails and ask them upfront to not baby you or enable your OCD. When they offer you reassurance or do anything to enable your obsessions and compulsions, they are siding with your disorder against you, instead of with you against your disorder. This is going to be hard for both sides. Tough love is not fun … but it is good.

4. If you’re the kind of person who prays, pray hard.

For those of you who have experienced ERP, what advice would you add?

Live OCD Free app: my review

Posted on February 25, 2013 by Jackie Lea Sommers

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

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

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

Live OCD Free app

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

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

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

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

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

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

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

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

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

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

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

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

All said, I highly recommend this product.

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

The important thing is that you pursue CBT.

JACKIE LEA SOMMERS

Author & Advocate

Tag Archives: exposure and response prevention therapy