nOCD, an ERP App/Hero

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

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

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

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

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

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

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

Some of the very best things about this app:

nocd.jpg

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

xoxo Jackie

Question & Dancer: What is “Normal” with OCD?

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.

My question is this.. I have hocd but whatever I do it just seems like I get afraid or concerned when a guy comes around me.. it’s like sometimes I look just to check if im attracted to them.. and it’s annoying because the action is becoming involuntary and it’s scary because people read what you send them .. and people are starting to think that I’m gay! And thats very false! What should I do to combat that?

Exposure and response prevention (ERP) therapy, which I’ve written about extensively on this blog: check out http://www.jackieleasommers.com/OCD, friend. Educate yourself on ERP; then seek out an ERP specialist or track down one of the books I recommend so that you can do ERP on your own. Either way, ERP is the solution.

Please read here about Self-Directed ERP.

i’ve met we a psychologist- but she doest seem to have any experience with HOCD and thus has not really been catching it’s symptoms/mentioned it, she does think i have an anxiety disorder and excessive worry- but not specifically anything on OCD. Note she is relatively inexperienced psychologist, as i’m a student and needed to find someone low cost. Not the psychologist has little experience as i’m a student and need a low cost specialist. She has mentioned CBT and ERP as helping methods though. so, what i wanted to ask is form what i have described do i sound like i have HOCD or an i in denial. I am not trying to seek reassurance but guidance, I don’t have anyone to turn to (from a very backwards society in asia) – should i be looking for an OCD specialist or a general psychologist to help me come to term with who i am?

Hi dear! You need an OCD specialist, specifically an ERP specialist. If you can’t afford to meet with one in person, then definitely track down a book (I list four on my website) that will guide you through doing ERP on your own! And kudos to you for being ultra-aware of seeking reassurance. That is one of the primary compulsions for many who suffer from HOCD– the more you are aware of it and resist it, the better! Click here to read more about the Problem with Reassurance.

Hi Jackie. I was wondering if you have any strategies to just letting the thoughts be thoughts in your head. On the web (when I looking for reassurance yes I know its sooooo bad but I can’t help it), people say to let those intrusive thoughts wonder in your mind, but do I just sit there and think nothing as those thoughts wreak havoc on my emotions? Do I just try to calmly breathe through it when my heart is beating super hard? It’s also so hard to not check for reassurance online! How did you have the strength to not reassure yourself? What did you say or think to yourself to prevent it? (I can’t afford a diagnosis, much less ERP so I’m scared that my HOCD may be actually be in denial, but I do know that I’ve had many obessions and compulsions in the past and when the professor talked about OCD, my first thought was THATS ME but then it’s also never been severe to the point where it has disrupted too much of my life. I would just cry myself to sleep most of the time when I’m obsessing)

When I read questions like this, it takes me back to specific memories– horrible, manic ones where I could not calm down, could not do much of anything except to cry and ask for reassurance. It feels so helpless and hopeless in those moments, but I promise it’s not! First of all, since you can’t afford an ERP therapist, please track down one of the books I recommend on my site so that it can guide you through ERP at home. For me, I had a set amount of time when I was intentionally practicing ERP– for me, it was about 40 minutes, twice a day (total of 80 minutes). In the grand scheme of the day, that’s under an hour and a half of putting myself through these exercises (which sometimes felt like torture). Although I did try to avoid compulsions throughout the day, it was only during these 80 minutes that I was specifically triggering myself (exposure) and resisting compulsions (response prevention). It is hard. Don’t let anyone tell you differently. It’s hard and exhausting and feels masochistic. But for me– and for many others– it worked. And it was worth 80 minutes a day for 12 weeks in order to experience this freedom– I’m coming up on nine years of it.

Hi! I’ve been having what I (hope)think is HOCD for two months now and it’s been an intense hell for me. I’ve always been confident that I’m straight and I’ve even intensely championed for gay rights and everything. I used to read articles about gay people and watch videos about people coming out and be fine. But now I avoid all of those and even romance novels because I’m basically terrified of being aroused for the wrong reasons (like if I read a love scene from a guy’s point of view that means I want to do that to a woman when I dont!??!?!?!?). I’ve been trying to do self-ERP and I’ve read that I’m suppose to embrace those “you are gay” “you are turned on because you actually want to do that to a woman” thoughts and the arousal that comes with it. My question is, if I embrace these thoughts for 10-12 weeks, will I really be healed? I JUST WANT THIS HOCD THING TO END.

I don’t think I or anyone can guarantee that 12 weeks of ERP will work for you. But it is an evidence-based treatment, meaning that the statistics of ERP working are in your favor. One thing I can almost for sure guarantee is that if you don’t do ERP, then your OCD will not go away on its own. I suppose it’s possible; miracles do happen. But, for 99% of us in the OCD community, we had to do the hard work of ERP.

Hi Jackie! I’m doing self-ERP for my HOCD right now and although I feel like it would be best with a therapist, I can’t afford it 😦 (maybe one day!) But anyways, my question is that I know when I’m doing ERP, I’m suppose to accept and AGREE with those thoughts of “Yes, you’re probably a lesbian” (gosh it was hard to even type that), but when I’m not doing ERP, do I still have to agree with my intrusive thoughts or should I just let it float around in my head? I know for my past OCD fears (earthquake, breast cancer, blackholes, intersex, death, etc) I would just stop checking and doing my compulsions and would let the thought float around in my head (never did ERP for those things) and a couple hellish months later it would disappear, but HOCD is taking my anxiety to another level (especially since I’m 20 and never been in a relationship with a guy because I’m soooooo shy so now my HOCD is using it as ammunition). Also when I have those OCD-free moments, can I go back to thinking about my crush and the imaginary life we may have one day (wow I’m so weird, I can’t believe I confessed this on the internet) or is that counter-productive to my ERP?

No, I don’t think that’s counter-productive to your ERP. That’s the goal! But during the moments where you are doing your ERP exercises, then yes– you will want to be all in: experiencing the anxiety completely, resisting the compulsions as completely as you’re able. One thing that you wrote specifically interests me: “I would just stop checking and doing my compulsions and would let the thought float around in my head (never did ERP for those things)” … this sounds like it was ERP, friend. Letting thoughts come and not doing compulsions to alleviate the anxiety … that is what ERP is. You can do this.

Hi Jackie, I’ve recently stumbled upon your blog because I am suffering from hocd. I’ve been dealing with it for around 9 months now. I feel so lost because it’s the worst time to really be dealing with all of this. I am a sophomore in high school and all around me people are questioning their sexualites or coming out etc. I line up with all hocd symptoms and anxiety runs in my family. The intrusive thoughts just popped out of no where one afternoon. All my life I’ve liked boys! I talked to my therapist about ERP but she’s not a specialist and I’m scared to even try it. My psychiatrist prescribed medicine that ended up making me worse. Like you I am an avid Christian, but I have always been doubtful and indecisive with everything. I FEEL SO LOST. I’ve lost my hope and feel like nothing is gonna work. I have a hard time believing this could be a disorder. I feel like I should just accept my intrusive thoughts are real but that just depresses me further. What do you think?

Hi honey. If your intrusive thoughts were real, I don’t think they would be intrusive or cause this intense anxiety. For a short time, just suspend your concern that you are dealing with anything other than OCD and tell yourself, “Yes, it IS OCD, and I will treat it.” There is no harm to doing ERP even if you didn’t actually have OCD. Be kind to yourself: accept your self-diagnosis at least for three months while you do ERP on your own with a book to guide you. “Doubtful,” “indecisive,” “so lost,” “lost my hope and feel like nothing is gonna work” … all of these described ME. For nearly 20 years, this is how I would have categorized myself. And, for whatever it’s worth, my sophomore year of high school was HELL, one of the worst and hardest years of my entire life, as I dealt with all of this while undiagnosed. When I was your age, I still faced another 12 years of clawing my way through this alone before I found and did ERP. Please don’t wait as long as I did.

These three questions all reminded me of each other:

1. I have been diagnosed with OCD (HOCD) and have been doing CBT and ERP. I feel as though I am getting better and the intensity of my obsessions and compulsions has reduced but I have this strange feeling of sowmhing not being right and as whole as it use to be? My attraction and desire for relationships and such seems very reduced. It just doesn’t seem to feel or come authentically – is that normal?

2. Is it normal to feel no attraction or interest in romantic relationships when suffering with HOCD, even when recovering (reduced obsessions and compulsions, but the feeling of not knowing your sexuality and not being attracted to the gender you always have been attracted to?

3. Is it normal to become hypersensitive to the looks of your same sex with the onset of HOCD? even if you’ve known and seen the person before they just appear a lot more attractive now? Is that a symptom of a change in sexuality or another Possible HOCD Symptom?

Yes, my dear ones, all of this is normal for someone with HOCD. Please don’t give up. ERP can help.

Hi Jackie, Did you ever feel like your hocd would never end? As a current hocd sufferer, I feel a lot that it’s never going to be over. I question and doubt even the most logic of facts I’ve been told to use in order to help cope with the intrusive thoughts. Everyday it’s a new “what if” question and it makes me terrified and sad.

Hello sweetie, YES. I felt that way about all of my OCD themes … that things would always be this way and that, to me, was probably the scariest thing about it. We can go through any pain so long as we see an end in sight, don’t you think? But OCD lies to us, makes us believe there is no end in sight, and that robs us of hope and joy. Please read this blog post I wrote back in 2014: THINGS WILL NEVER BE OKAY AGAIN [& other lies I sometimes still believe].

I am 54 years old recently my ocd has become worse for last 6 months since i changed my job and because of ocd anxiety i am not able to work at present. My ocd is mostly god related i have to pray and touch god photos everytime i pass through them and think i have not prayed properly and become anxious. Also there are lots of thoughts coming and going in my head always about touching god photos etc and i am not satisfied with my praying i tried medicines and they made my condition worst,Please help me Sir

Hello friend, have you heard of ERP therapy? My OCD was also based primarily around religious obsessions; I battled this for 20 years before undergoing ERP, and just 12 weeks of ERP therapy snapped my OCD in half. The last nine years have been so peaceful, so free. Here are a few posts that might help:

OCD & Christianity
(or other religious scrupulosity)
OCD, ERP, and Christianity
I’m a Christian and Take Meds!
Unashamed of my OCD
Is the thought from OCD … or God?

God’s Sovereignty, OCD, the Cross, & His Purposes
Is Mental Illness a Spiritual Issue?
Is ERP Sinful?
OCD & Faith (or Lack Thereof): a Double Interview

Hi Jackie, I have been suffering from hocd for a while now. One of my biggest problems besides the intrusive thoughts and fear I can’t shake off is the EXTREME SADNESS I have. I feel like I get sucked into this dark hole where I can’t get rid of feeling hopeless and sad. I lose all motivation to do my homework and just feel angry at god. Have you ever felt this way? If so, what did you do to help yourself?

My gosh, YES. 100% yes. I am guessing that you have depression comorbid (alongside) OCD, as I did. For me, the OCD was the root issue and what was causing the depression, so when I treated the OCD, the depression alleviated as well. I talk about my anger at God a little bit in this post. Ultimately, I got so sad and felt so lost that I hit rock bottom– and God was there. He looked like a Korean psychiatrist who gave me hope, a prescription, and a phone number for a local ERP therapist.

Hi Jackie, I finally realized my problem is OCD. My question is, do people with this “doubting disease” have the capacity to have faith? I’m so worried I might lose faith altogether, because of what’s wrong with me.

Yes, absolutely! In Yes Novel (my work in progress that has been temporarily set aside), the main character has this interaction with his professor:

He nodded, headed toward the door. But before he left, he turned around and asked, “What you teach us in class, do you really believe it?”

Dr. Morgant pursed his lips thoughtfully. “On my worst days and my best days, yes. But not every day. There’s only one thing in I believe every day.”

“Doubt,” said Asa, as his teacher said, “Faith.”

“Same thing,” said Dr. Morgant with a smile.

Anne Lamott has said it best:

I have a lot of faith. But I am also afraid a lot, and have no real certainty about anything. I remembered something Father Tom had told me–that the opposite of faith is not doubt, but certainty. Certainty is missing the point entirely. Faith includes noticing the mess, the emptiness and discomfort, and letting it be there until some light returns.

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.)

HOCD Questions?

Out of the OCD sufferers I hear from, 9 out of 10 are battling HOCD.

In the past, a friend “Hannah,” who has come out on top of HOCD, has been happy to answer questions about her hocd questionsexperience with HOCD.

Hannah’s 1st Interview
2nd Interview
3rd Interview

If you have HOCD-related questions for Hannah, please read the above interviews first to see if she has already answered them. If not, you can anonymously submit your question(s) for Hannah by clicking here.

Once I collect a handful of questions for her, I’ll send them her way and post the answers!

Thanks!

HOCD: A Letter to Loved Ones

Here are a couple hard truths:
1) I hear from more OCD sufferers dealing with HOCD than with any other theme.
2) Many of these sufferers are quite young, still in school, unsure how to seek out help, and scared to share their hard-to-explain concerns with parents or other trusted people in their lives.

I want so much to do something meaningful to help them find their footing.

So, I’m writing here a letter that they can show their parents/trusted advisors. I’m hoping to be a voice if they can’t find their own.

Friends, feel free to share this as needed.

hocd letter

Dear friend of a reader of my blog, hello.

You’ve likely been sent to this blog post by someone who wasn’t able to articulate what he or she is going through– suffering from– or someone who was too scared to trust their own voice and explanation. I hope I can help explain a few things.

The person who sent you this has a strong suspicion that he or she is suffering from what is called HOCD or “homosexual OCD.” Two things to know up front: one, this type of OCD affects both gay and straight people, and two, it does NOT mean that the person who sent you here is gay (if they identify as a straight person) or straight (if they identify as gay).

Confused yet? 🙂 Let me explain.

Obsessive-compulsive disorder can take a lot of forms. What most people think about when they hear OCD is someone who is overly worried about germs or order. While those concerns can be true of an OCD sufferer, the stereotype really misses the point, which is that an OCD sufferer has obsessions– the “O”– unwanted thoughts or images that plague them and cause intense anxiety. They try to relieve the anxiety with compulsions– the “C”– which can take almost any form … really, anything that alleviates the panic they feel. For people who have obsessions about germs, illness, or death, the compulsions often include washing their hands, visiting a doctor, or asking for reassurance (“Do you think I’ll get sick? Do you think I’ll die? Do you think I’m okay?”). For those who have religious obsessions, the compulsions often include repetitive prayer, confession, and (again) seeking reassurance (“Do you think that was sinful? Do you think I’ll go to heaven?”).

One common “theme” of OCD is to question one’s sexuality. We call this theme HOCD. It often comes out of nowhere. Someone who is perfectly comfortable with their sexuality, someone who has never, ever questioned it before, can suddenly be triggered– and now, it’s the only thing they can think about. It becomes their obsession, and to alleviate the anxiety, their compulsions are often things like continually checking their bodily responses to men and women, comparing them, seeking reassurance (sometimes from others, sometimes just from themselves). Often, they will end up spending a great deal of time on the internet, trying to find out why they suddenly are worried they are gay (or straight). I’ve talked to many HOCD sufferers who fit every profile of a straight person– except that they cannot shake the obsession of “what if I’m gay?” Some of these sufferers (both gay and straight, remember) feel absolutely tortured– and no wonder! Our sexual identities are so close to our core. I might hear from a young girl who wants nothing more than to fall in love with a man and get married, but all she can think about is “what if I’m actually gay? what if I get married and years from now, have to leave my husband because it turns out I’m a lesbian?” She will start looking at other young woman, wondering, “Do I find her attractive?” She may start losing her usual attraction to men. She might want to stop hanging out with her girl friends for fear of “turning gay.” (Again, note that HOCD can happen for both men and women, those who identify as straight and gay.) The inability to be 100% certain about their sexuality causes them tremendous distress.

(Even that– “tremendous distress”– is not saying enough. HOCD is sheer torture. And for those who are young and not sure where to turn or who are scared that vocalizing their worries will label them as something they are not– or that they deeply fear being– it is hell.)

A conversation with someone struggling with HOCD can be very confusing.

“So, you like men and want to date and marry a man, but you think you like women?”
“No. I mean, yes. I mean, I’m not gay. I mean, I *think* I’m not gay. I don’t want to be gay.”

“So, wait, you’ve identified as a homosexual man and told us all that you are attracted to men, but now you think you might be straight?”
“No. I don’t know. I don’t want to be straight. But I’m scared I might be. I just need to know for sure.”

That– “I just need to know for sure”– is the battle cry of every person with OCD (whether it manifests itself as HOCD or not).

What you need to know is that, no matter what this looks like, HOCD is not really a battle over sexuality– it is really a brain disorder in which the sufferer’s mind demands a certainty that is quite simply not available in real life. A “normal” mind lets thoughts come and go as they please, but someone with OCD has a mind that traps thoughts so that they only go around and around in circles.

That is why, in the proper treatment of OCD (HOCD or otherwise), we don’t treat the symptoms– the obsessions or compulsions. We treat the OCD and the desperate need for certainty.

Treating the symptoms is like reacting to a fire while the arsonist sets another one somewhere else.
Treating the OCD is like going after the arsonist itself.

How is that done? Through ERP (exposure and response prevention) therapy or through ERP plus medication.

ERP is a therapy in which the brain is re-wired to be able to better deal with uncertainty. It uses exposures that trigger the patient’s anxiety but requests that the patient not respond with compulsions. Instead of getting out of the cold water, the patient is taught to stay in the cold water and get used to it. After a time, as most of us know, it no longer feels cold.

ERP therapy can be done with a professional therapist (there is a great database on the International OCD Foundation’s site) or, with dedication, it can be done from home on one’s own, or with the help of family and friends. I have a list of books that will explain how to do that here.

The most important thing for you to know is that this is not really a battle over this child’s sexuality. It is really a larger, overarching brain disorder and inability to handle uncertainty. OCD will typically move on to harder and scarier themes until it is treated, so I recommend that you help the person who directed you here to get professional help sooner than later. Although this might seem like the time for the family (or even a talk therapist) to “talk it out,” that is the equivalent of putting out fires while the arsonist is still at large. ERP therapy takes out the arsonist.

There are lots of additional resources to help you understand OCD, ERP, and your options at jackieleasommers.com/OCD.

Thank you for being a trusted person for my blog reader.

Best,
Jackie Lea Sommers

P.S. I suffered from various themes of OCD for twenty years. Just twelve weeks of ERP therapy brought my life back under my control. It really works.

P.P.S. As always, a reminder: I’m not a therapist or medical professional– I just have OCD and know a lot about it.