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.)

 

A Detailed Post about ERP

ERPI 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.

Related posts:
OCD, ERP, & Christianity
ERP & Imaginal Exposures
Preparing for ERP Therapy
Medication vs. Exposure Therapy
All About CBT

ERP & Imaginal Exposures

I’ve written elsewhere on this blog about Exposure and Response Prevention therapy (ERP) and how different my life is after I underwent an intense 12 weeks of this type of cognitive-behavioral therapy.  ERP is exactly what the name says it is: you are exposed to something that will trigger your obsessions and then you are prevented from responding with a compulsion that will relieve your anxiety.

For example, someone who has contamination obsessions and hand-washing compulsions might be made to touch garbage and then is not allowed to wash her hands.  Instead, she sits with that anxiety, feeling it intensely.  If someone has HOCD obsessions and seeking reassurance compulsions, she might have to look through a Victoria’s Secret catalog and is not allowed to ask, “Am I gay?  Am I straight?”

So, what happens when you have Pure-O obsessions?  What if your obsession is that you will kill your newborn daughter and your compulsion is to stay away from her crib?  What if your obsession is that you’re going to blaspheme God and go to hell and your compulsion is repeating a prayer in your head?

Then what?  You can’t really kill your daughter (um, big DUH there, but you get it!) and you can’t really go to hell, so how in the world are you able to practice an exposure then?

"little sad song" by *TrixyPixie on deviantART

“little sad song” by *TrixyPixie on deviantART

Imaginal exposures, baby.  Brilliant and brutal.

In situations like these, what you might be expected to do is to write down all the ways you could kill your daughter, read it into a digital recorder, and then listen to it over and over.  Or maybe you’ll create a story in which you go to hell, where you’re forever condemned, and you read that story again and again.

If you’re an obsessive-compulsive, trust me, these imaginal exposures are going to FREAK. YOU. OUT.  They will be so triggering and so terrifying that your anxiety is going to spike, no problem.

Meanwhile, no compulsions allowed.

Meanwhile, ERP is re-wiring your brain.

Meanwhile, you’re stepping toward freedom.  And “all” you had to do was listen to a story.

This was my particular brand of ERP actually.  I had to listen to my recording for about 80 minutes a day until my anxiety levels (self-measured at the beginning, middle, and end) decreased by 50%.  For the first ten weeks or so, my anxiety levels were NOT dropping, and I very nearly gave up.  I mean, why put myself through this misery and terror every day if it was doing no good?

But then.

Sometime during week eleven, those anxiety levels started to drop.  I developed a whole new way of looking at my intrusive thoughts.  I tiptoed up to OCD.  I can still remember the day when I was listening (again) to that horrid recording, and instead of feeling anxious, my thought was, “This is getting so annoying.

And then I laughed … because … because finally.  You know what I mean.