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.)

 

No Shortcuts

When Jeff Bell, spokesperson for the International OCD Foundation, spoke for our OCD Twin Cities event, one of the things he said that really stood out to me was that there are no shortcuts in treating OCD.

Woman and maze

That’s true, or at least it was in my case. I wanted easy answers: for deep theological conversations to solve my problems, or for comfort and reassurance from friends to be enough, for an hour-long conversation with a therapist each week to take away the anxiety, for an easy prescription to fix everything.

I definitely did not want the hard answer: exposure and response prevention therapy.

My psychiatrist didn’t mince words in his description: “It will be hell.”

It was one of the hardest things I’ve ever had to do in my life, but one of the most necessary and most rewarding. For me, there was no shortcut to healing, and since I was already living in OCD hell, the best way out was to keep going.

So, believe me, friends: I get it. ERP therapy is hard, so hard. You might think you won’t survive it. You might think your loved ones won’t survive your going through it. You might think it’s sinful or disgusting, and your exposures are probably going to be loathsome and repellent to you.

If you need to, go ahead and look for shortcuts. I know I had to.

But in the end, there were none for me, and I’d only wasted time looking for them.

While experiencing it, ERP was hell. But on the other side? It was my rescue.

 

The Long Journey … to the Starting Line

"Cross That Line" by xLadyDaisyx on deviantArt

“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 lifesomeone 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.

obsessive-compulsive since age seven

My OCD struck at age seven.  Strep-throat-gone-to-hell and all of the sudden curse words were running through my head as if I were some foul-mouthed sailor, when the truth of the matter was that I was a shy (Yes, really!  Hard to believe now!) girl from a conservative home, who would have never DARED to utter those phrases outloud.

I began to worry that I would lie if I gave my opinion, so for a while, my answer to everything was “I don’t know.”  Favorite color?

I don’t know.

Did I like my teacher?

I don’t know.

Should we do this or that?

I don’t know.

Ridiculous.

I have this image in my head of running to find my mom under the clothesline, smacking my fist against my forehead, and confessing.  My poor mom.

I wish we’d known then.  It would be another fifteen years before my OCD would even be named, but I’ve wondered what life would have been like had we caught it back in the summer of 1989.  Drat you, internet, for coming along too late!

Every once in a while I google things like “my daughter is attacked by bad thoughts” or “my daughter has bad thoughts” or “my daughter keeps confessing” to see how quickly the trail leads to OCD.

My heart breaks for the obsessive-compulsive children out there, wild minds racing, hearts terrified, robbed of childhood.

Parents can look for the following possible signs of OCD:

  • repetitive confession
  • constantly seeking reassurance
  • raw, chapped hands from constant washing
  • unusually high rate of soap or paper towel usage
  • high, unexplained utility bills
  • a sudden drop in test grades
  • unproductive hours spent doing homework
  • holes erased through test papers and homework
  • requests for family members to repeat strange phrases or keep answering the same question
  • a persistent fear of illness
  • a dramatic increase in laundry
  • an exceptionally long amount of time spent getting ready for bed
  • a continual fear that something terrible will happen to someone
  • constant checks of the health of family members
  • reluctance to leave the house at the same time as other family members

I waited fifteen years to be diagnosed.  Just take your kiddo to the psychiatrist.*

*I’m not mad at you, Momma. 🙂  How could we have known?  You’re my favorite.