by stuart mile
freedigitalphotos.net
Last week I received an email from a woman in her thirties who has had OCD since she was a child. She came across one of my articles and was interested in learning more about exposure and response prevention (ERP) therapy, as she had never heard of it. She had been to all kinds of health care providers over the years, but she had never heard of ERP.
Unfortunately, emails such as hers are not uncommon, but boy are they frustrating. She’s had OCD for twenty plus years and never heard of ERP? This realization jolts me out of my little corner of the world (or blogosphere) where everyone knows about ERP therapy because we talk about it over and over again. Is progress actually being made? Are we really getting the word out? Sometimes I just don’t think so.
It’s bad enough that so many people with OCD are not familiar with the proper treatment, but when I see articles such as this one, I become even more discouraged. On the surface, it’s positive news:
“High-intensity focused ultrasound may help relieve symptoms of obsessive-compulsive disorder (OCD) in hard-to-treat patients, according to preliminary findings of new research.”
But if you read the article, you will likely see what I noticed right away. There is no mention whatsoever of ERP therapy, or any Cognitive Behavioral Therapy for that matter. The study mentioned in the article was conducted by Jin Woo Chang, M.D., Ph.D., with results published in the Journal of Molecular Psychiatry. Dr. Chang says:
“There is a need for non-invasive treatment options for patients with OCD that cannot be managed through medication.”
Hmm. Non-invasive treatment options. ERP anyone?
The article goes on to talk about focused ultrasound as a possible good non-invasive treatment option for those with OCD. I think it’s great that this technique shows promise…..but not even a mention of ERP therapy? It boggles my mind.
Someone searching for treatments for OCD who stumbles on this article might easily assume medication, surgery, and possibly this new ultrasound procedure are their only options. What about exposure and response prevention (ERP) therapy, which is recommended as the first line psychological treatment for OCD by the American Psychological Association? Why is that not included?
Honestly, I have no idea. Do you?
ocdtalk 
I was appalled that on the OCD Foundation web site -where there lists of providers by state-there was one guy who clearly had no qualification. We had been pushing our 20 something daughter to go and try therapy. I gave her the list. Her appoinment was a disaster. She called in tears. He had talked to her about how there must be problems with her family and OCD was somehow a coping strategy. She came away feeling bad about herself and us. FORTUNATELY she also knew enough to think this guy might not know the best treatment. We had talked about it a lot and she at least knew about ERP. BUT why was that guy allowed to list himself on their site?! I gather they allow people to just list themselves. That should be fixed.
Next-this all hinges on OCD and ERP “coming out” of the closet. Actually all of “mental” illness has to step out of the shadows. We’ve started with OCD but a concerted effort regular TV appearances, Facebook posts, talks around town, certification of some sort for those trained in actual ERP, etc. is needed. The international foundation’s efforts are a start but they fall short still. I’m sure lots of it is money (and I know their big effort is research). Another thing is geography. If you are on one of the coasts or in Texas or Florida there’s treatment. But here in the vast middle/heartland/fly over country resources were very few and far between when I’ve looked for help. When we suddenly had to find treatment that took my daughter’s insurance (and thank God for insurance now being forced to treat this as an illness) there were 3 available for the “intensive outpatient” where she went 6 hours a day. Wisconsin (7-8 hours away) Chicago (5-6 hours away) and St. Louis (5hours). The cost of that 6 weeks was enormous. I guesstimate it at $10,000 that we paid for her – covering her costs when she didn’t work, $6000 out of pocket on the insurance and the cost of the extended stay hotel and other travel costs. She couldn’t have done that alone so there was my time (I was on school break) and our money. The program had ERP but the therapist she had at first was a bad fit. So 6 weeks really was about 2 weeks with someone who worked for her. It was a start but wasn’t the strong foundation she needed. Plus no follow up due to distance. AND as we were leaving they said “really she needs in patient treatment since her compulsions revolve around showering and other bathroom issues”. Thanks for telling us now was my thought. As far as I could tell there were about 2 or 3 of those in the whole country! Only 1-2 locally trained therapists for ERP done on her own at home and work. That’s a no go at this point. So cost and accessibility is HUGE. Why say this is the treatment if only a handful can get the right help at a reasonable price?
Too long, so stepping off the soapbox. Maybe when I retire in 6 months I can do some advocacy work. Thanks for listening. 😃
Hi Nancy, Thanks so much for sharing, and I can certainly sense and feel your frustration……and I don’t blame you. I agree there is so much more work that needs to be done. I look forward to your retiring………the more advocates the better :).
I agree with Nancy totally! Finding help for our son has almost been impossible! Even if you find a therapist that seems to be able to give ERP, they won’t take insurance, and charge around 300.00 an hour. After weeks and thousands spent, they then tell me he needs inpatient, and of course that would be out of state, and thousands of dollars more, and of course he can not go alone!!
So we sent him to inpatient, after two weeks they sent him home, because they felt he needed out patient?
So he came home and has slowly gotten worse. Medication did not work for him at all.
What I can not figure out, is if it wasn’t working with his therapist there, why they didn’t change therapists? We went to a great deal of effort, and money getting him there—and their attitude,was that he could come back later? We live in AZ. and his treatment was at the other side of the states!
Now he won’t leave the house at all, and has stopped touching anything. And the therapists here do not make house calls! So we are in a real predicament—finding a good therapist—and having the cash to pay them, and if we do—hoping they know what they are doing!
Really Frustrated in AZ.
Thanks for sharing, Brenda, and I’m so sorry things are still so rough for you and your son. I wish I had some magic solution for you……your story is so frustrating and upsetting on so many levels. You are a great mom doing the best you can for your son….I can’t remember if you ever considered telemedicine, such as Skyping,etc with a therapist???.I hope 2015 is a better year as you move forward. Please keep in touch!
Wow, what a powerful blog and responses. In response to the comments: I am in Nashville and glad to help people find the right help if I can. When I was first looking into my diagnosis of OCD, it was a whirlwind of confusion for my then boyfriend, now husband and me. Jon Grayson told me the first step in getting healthier was a willingness to live a life without guarantees. Boy was that HARD. But I did make the decision. I did not do it perfectly and still have lots of moments, almost 20 years later. I was in San Jose at the time and was advocating for a client who was working to get treatment through his medical insurance for his OCD. While they did not cover inpatient with one diagnoses, when we approached it as a neurobiological brain disorder- guess what! He got the coverage. I went with him to his psychiatrist appt. and the doctor did not have a clue on how to treat OCD, so I gently suggested he contact a well known OCD doc at Stanford at the time and the psychiatrist was open to getting guidance.
Before I moved to TN I contacted the Vanderbilt OCD clinic and talked with a nurse in the clinic who is now the primary OCD therapist there. She is awesome and supported my work in having a support group here for a number of years. When I had to deal with PTSD along with OCD, I contacted an OCD specialist who also treats PTSD and asked for suggestions. It changed my life. I got the most amazing therapist who worked with me for several years.
I think finding the right therapist and psychiatrist can be frustrating and overwhelming. Even the best treatment providers are not the best if they are not the best for you. OCD requires such special training to provide ERP and CBT in non-threatening encouraging ways. There IS help out there, it is a matter of locating it. Lorre Leon Mendelson, lorreleon@bellsouth.net
Several years ago my secretary came to me and told me she had heard how many germs are on a desk- the phone, computer, etc and I should use clorox wipes. When I looked at the commercial advertising the cleaning, it was sponsored by clorox. I was reminded of that when I read the article on ultrasound. Thees docs are ultrasound doctors and I think their focus is looking at how they can use ultrasound to treat people. They are not invested in non-medical alternatives as best I can gather. THAT, I believe is why there is no mention of ERP. Thanks for letting me write. Sincerely, Lorre
Thanks for sharing, Lorre and it does seem that one of the hardest aspects of OCD is finding the right therapist and treatment. I appreciate your insight and opinion regarding the article also…..
I don’t understand it either. I personally had never heard of it until I started blogging and reading other OCD-themed blogs. I had been told of cognitive therapy, but never the ERP. I had seen exposure therapy used on a TV show about obsessions, but the way it was presented made it look so far out there, not for the average person. Keep doing what you’re doing, Janet. you are doing a tremendous service in getting the word out there.
Thanks for sharing, Tina, and for your kind words. I think hearing about ERP in a sensationalized way, as you did on TV, is worse than not knowing about it at all! I’m sure you saw what was depicted and thought, “I’d never do that.” Who would? Sigh…….so much more work to be done!!
Great post, Janet, and excellent questions. Why is it still so hard not only to find ERP therapy, but even to find the right information about it (even among medical providers)? Thank you for all you’re doing to help many individuals get the help they need.
Thanks for your comment, Seth, and for your kind words. It sure can get frustrating, but we will keep plugging along……….
Do they not teach potential therapists/psychologists about ERP in school? If not, why not? I wonder how much they spend specifically teaching about OCD in general. It doesn’t seem like it is that rare of a disease (I believe around 2% of the population has it). Maybe they are just now starting to teach more about it, so maybe the newer therapists will have more knowledge about this.
You bring up an excellent point, Carrie…….what ARE these students being taught? Even if ERP is not delved into, up and coming therapists should, at the very least, be aware of its existence! And you are right that OCD is not rare. In fact many believe that 2% of the population is a gross underestimation. Thanks for your comment!
Grrrrrrrrrr. This upsets me GREATLY. And I just don’t get it. A two minute search online will bring you to the IOCDF and the most recommended treatment options. I honestly don’t know what else to say . . .
Hi Sunny, I can feel your frustration in your comment. I agree the information is out there for those who know where to look. I remember when we were in the throes of Dan’s crisis, it never even occurred to me to check the Internet……..we just trusted his health care providers. These professionals need to be better trained, or at the very least, better informed! Thanks for your comment!
Janet, I thank you and others like you who have been so courageous and generous in sharing their story in a way that is accessible to the rest of us. My story is like so many others’ — yet I didn’t realize that until I discovered all of these OCD blogs last year.
Like the woman you mention in your post, I am a 43-year-old woman who has suffered from and struggled with OCD since the age of 9. I remember my very first OCD “incident,” and I also remember the many times that I could have been offered help, but the well-meaning but uninformed people in my life were relieved to just brush off my oddball actions when I offered a lame excuse.
I have seen my fair share of therapists and psychiatrists over the years. Most had absolutely no experience treating OCD. Thanks to the TV show Hoarders, I learned about CBT. While I don’t hoard, I was shocked to learn that hoarding is on the OCD spectrum and that there is treatment for obsessive-compulsive disorders called Cognitive Behavioral Therapy. I had never heard of it before. The therapists on the show practiced CBT and it made me realize that there must be therapists in my area that “specialize” in OCD.
I found a therapist who I thought would be perfect. But after a couple of years I was absolutely miserable and no closer to being helped. Now that I know about ERP, I realize that this therapist was using parts of ERP to try to help me. But the problem is, ERP really has to be all or nothing. If you only follow 1/3 of a recipe, you’re not going to end up with chocolate cake at the end. If you’re going to pick and choose only some aspects of ERP, you’re going to end up with a confused and un-helped patient at the end.
I am sure that everyone who reads your blog can identify with the daunting task of finding a new therapist. You’ve invested time and money with one person, and though it begins to dawn on you that they really aren’t the right fit, the prospect of researching someone new, waiting for an appointment, and then baring your soul once again is not exactly appealing.
In 2013 I finally found a great therapist and an excellent psychiatrist who is well-versed in all medications on the market. With their support and a long road of trial and errors (lots of errors), we finally found the right combination of medication for me that I need to even be able to begin the process of ERP.
My therapist was very honest with me from the very first appointment and told me that she did not specifically treat OCD, and that she would help me find another therapist any time that I wanted to. But I was in such a depressed state, I needed to get back to some form of basic stability, and for me, medication was the only way to do that.
I started using the internet to research OCD. The first time that I read a blog that described MY OCD, not pop culture’s misinformed notion of OCD, I was ecstatic. I had never, ever before encountered anyone who experienced what I experienced. I then started following links to other blogs, including your own, where I discovered that there is a world out there of people just like me — I am not the only one. OCD has made my mind my own worst enemy, but guess what? I am not the only one. And through these blogs and websites, that’s how I learned about ERP.
Last summer I finally had the courage to read Dr. Grayson’s “Freedom from OCD.” The book was life-changing for me and was the first time that I fully understood what ERP is all about. I immediately told my therapist and psychiatrist that they had to read it. If they really wanted to know what it felt like to have OCD, they needed to read that book.
I am so much better off than I was before, but I have slip-ups all the time and that can get you down. What I’m realizing is that you have to do “physical therapy for your mind.” If you injure a bone or joint or what have you, after it’s back in place you have to strengthen the surrounding muscles otherwise you’re just going to get injured again. The same holds true with ERP. Just because you go through the initial round of it and feel like you’ve made tremendous progress, unless you really work at it to reinforce the new positive messages and behaviors, you’re going to slip back into the mindset that you’ve held for most of your life.
Your son is incredibly lucky to have you as a parent, and we are incredibly lucky that you and he have so willingly shared his story to help the rest of us.
Hi Kate, Thank you so much for sharing your story, and also for your kind words. I do sometimes shudder to think of all those (before the advent of the Internet, in particular) who suffered from OCD and were never lucky enough to learn what you did………that you are not alone. Of course it shouldn’t have taken you 30+ years but I am so glad you are finally on the right path. I absolutely love your statement: “ERP really has to be all or nothing. If you only follow 1/3 of a recipe, you’re not going to end up with chocolate cake at the end.” What a great way to describe ERP and drive home the message of how important it is to fully commit to the therapy. I wish you all the best as you move forward and hope to hear more from you!
Hi Janet, I’ve read so many of your articles over the years and have appreciated the way you get right to the heart of the problems people face with this often crippling disorder. Thank you for sharing about your son and yourself,and for being an advocate for so many. I’ve printed out many of your posts to share with my clients.
I’d like to answer your question about professional training in grad school for therapists in a counseling/psychology program. You see, I am a lifelong OCD sufferer, who went back to school six years ago in order to specialize in providing OCD therapy. Out of six semesters, we had one single class where OCD was mentioned, and we watched a film about someone with handwashing issues and that was it. In my mind, it just reinforced the stereotypes that OCD is all about contamination. Absolutely no mention of ERP; that is something I have learned on my own and adapted from my own therapy for the disorder. I felt that I was constantly educating the class and professors about OCD. Any project that I could have a choice on the topic was always focused on OCD symptoms, research and treatment. I think my classmates probably got tired of hearing about it. So at least in my MA program, there was the most minimal presentation of OCD possible.
I’m so grateful to live in a time where ERP therapy is available, as I had some pretty unfortunate experiences many years ago. 33 years ago, the psychologist I was seeing and paying a fortune to out of pocket, instructed me to wear a rubber band around my wrist. If I had an obsessive thought, I was to snap the rubber band, (snap myself back into reality), and if I had 30 or less snaps per day I was cured. With this total set up for failure, I began to think I was beyond all hope when I would give my sore wrist its 57th snap of the day. His next suggestion was primal scream therapy.
I feel so deeply for the pain that OCD sufferers live with each day, and do my best in my corner of the world to both treat and educate the public. I’ve been able to do some training for professionals and it feels great. They are all so open to it, and interested in learning and being able to provide hope for their clients, We are slowly making headway, but it still takes an average of 14 to 17 years from first noticing symptoms to receiving proper treatment, and that is tragic.
Hi Carol, Thank you so much for your kind words and I’m glad you’ve found my posts helpful over the years. I appreciate your taking the time to share your experiences. Your grad school training is as unsettling as the “treatment” you received yourself……..no mention of ERP in either case! Incredibly frustrating and upsertting. Thanks for all you do for those who suffer from OCD…….we could use more or “you!”
Hey ! I have question regarding hocd and erp ! How does erp help in overcoming hocd ? Is it really effective ? My anxiety level are increasing day by day ! If you could just give me a positive response that would be helpful !
Hi Euro, Yes, HOCD can be helped by ERP therapy. All types of OCD can be helped with ERP therapy. Good luck! I wish you all the best.