Healed Not Cured: OCD Remission & Relapses

I got an email this past weekend from a lovely blog reader who has found victory over obsessive-compulsive disorder through exposure therapy. It’s such a joy any time someone shares a story of freedom, and it does my heart so much good. It reminds me of the reason I preach the benefits of ERP therapy. It reminds me of when I first went into OCD remission back in 2008.

But I also find it important to mention that while the person with OCD has experienced healing, it does not mean that they are cured. In the vast majority of cases, OCD is never cured; it is treated and maintained. What does this mean?

First of all, it’s definitely something to celebrate. I revel in my remission, and in fact, after eight years of this freedom, sometimes I even find myself taking it for granted. It’s a victory to come out of exposure therapy with a new tolerance for uncertainty. It’s a joy and a relief and, for me, at least, a whole new life.

But it doesn’t mean that I don’t have OCD. 

not you again

There are days of intense stress where I buckle a bit and find myself having some obsessive thought patterns or even resorting to old compulsions. This disorder is mostly dormant in me … but it is still in me. And it can wake when I am stressed or fearful. Every once in a while, there is something that will trigger my OCD, and it’s like there’s a CLICK in the way my brain works, a little BLIP in the new system.

But, usually

  1. I recognize it for what it is. I am able to do this because of ERP.
  2. I do not beat myself up over it or assume “all is lost.” It’s merely a step back. I don’t have to start the race over.
  3. I refuse compulsions. (Notably, I allow myself to ask a group of people [usually my coworkers] ONE TIME for what they would deem the appropriate response, and then I DO IT, whatever they say. I know that when my OCD is triggered, I have a hard time understand what is or isn’t a valid response. So I give the decision to others.)
  4. If it’s particularly bad, I listen to my ERP audio track.
  5. I go to sleep, as early as I need to. It is–almost without fail–better in the morning.

I don’t mean this to be bad news–not at all; rather, it’s just something to take note of, something to have in the back of your mind for those stressful days, for those moments when your OCD wakes up and starts to whisper in your ear.

Here’s some anecdotal data about my remission and relapses:

  • In the first 1.5 years after completing ERP, I didn’t experience obsessions or practice compulsions at all.
  • In the years after that, I have had about 1-2 relapse incidents a year.
  • Each incident has lasted on average just a couple of hours. One lasted about two days.

This is nothing compared to my life before ERP. This is manageable. This is freedom. This is remission.

This is good news, people.

If you want to learn more about the exposure therapy that got me to this point, you might want to check out the following links:

jackieleasommers.com/OCD: a collection of my posts about all things OCD
jackieleasommers.com/OCD-help: a letter from me to OCD sufferers, along with a list of next steps
jackieleasommers.com/twin-cities-OCD: resources for OCD sufferers living in or around Minneapolis and St. Paul

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.)

 

OCD in Remission: Eyes on OCD or Eyes on the Journey?

I recently received a fascinating email from a young woman with obsessive-compulsive disorder, who posed a question that made me stop and think.

I would love it if you could offer me your take on this: is it better to keep my eyes on my feet (IE journey), or is it a good idea to keep an eye on my OCD?

Essentially, she was asking if it was smarter to keep an eye on the illness (knowing that OCD is never cured, only managed) or if it was better to ignore OCD while she could and just enjoy the journey.

periphery2Here’s what I said:

Such a good, thought-provoking question.  I imagine that the answer might be different from person to person, but as for me, I think the answer is a little bit of both.
 
My OCD has been in remission since ERP five years ago.  These days, I don’t pay a terrible amount of attention to my OCD because it’s no longer intruding on my life on a regular basis.  That said, if I have an off day, OCD is the first thing I “check”– did I take my meds, am I having intrusive thoughts and need to practice some exposures again, etc.?
 
I think it’s BEST to keep your eyes on the journey.  But you still have peripheral vision. 🙂

For more about the ERP therapy that set me free, go to jackieleasommers.com/OCD.

Image credit: toxicbarbie13