OCD and Early Treatment Experiences

depressed man

I know quite a few people with obsessive-compulsive disorder, either through cyberspace, or “real life.” It seems to me that almost every one of them has some kind of  story to tell about their early experiences reaching out for help. And they’re not positive stories. They are accounts of misdiagnosis, no diagnosis, or mistreatment. They are tales of being told by family they are fine, or they must be exaggerating. They are advised to just “suck it up” or at the very least relax.  If they are lucky enough to receive a proper diagnosis early on, they are often either just given medication with no offer of additional therapy, or treated with the wrong kind of therapy.

As many OCD sufferers will attest, asking for help, especially that very first time, is a difficult and scary thing to do. In some cases, sufferers muster the courage to tell a loved one or a professional about their obsessions and compulsions. In other cases, it has just become too obvious to hide anymore. Either way, it can be terrifying to put yourself out there, especially when you are so frightened, confused and anxious. To finally admit you need help, and then be dealt with so poorly, can be devastating. These early negative experiences might make OCD sufferers leery of future treatment. They’d rather have no therapy at all than risk being mistreated again.

In my son Dan’s case, he correctly diagnosed himself with OCD, but then met with a therapist who, unbeknownst to us, didn’t know how to properly treat the disorder. Appropriate treatment was therefore delayed, and of course his OCD worsened. He also became disheartened. Why wasn’t the therapy working? Was his OCD not treatable? Thankfully, he eventually did receive Exposure and Response Prevention Therapy, but finding the right therapy and therapists was not easy.

How much smoother the journey back to good health would be if all therapists were able to properly diagnose and treat obsessive-compulsive disorder. We need to keep advocating for OCD awareness and education, so that these negative early treatment stories are replaced with positive ones. Getting the right help early on can substantially weaken the power of OCD. What better way to fight the disorder?

I’d love to hear about your early treatment experiences, positive or negative……..

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78 Responses to OCD and Early Treatment Experiences

  1. time2cher says:

    Janet sometimes I think your posts come at the perfect time. My daughter just came to me 15 minutes ago to say she still doesn’t feel like she is getting better. Three years ago it began with a diagnosis of GAD and depression, had outpatient partial program and then sent to work with a social worker who seemed new. Since then she has been properly diagnosed with thought OCD and they are playing around with different medications and now trying ERP therapy which she can’t even do right now because of her anxiety of thoughts and rituals. If anyone knows places for teens of thought OCD we welcome any recommendations. We need direction and not more misdiagnosis and wrong treatment.
    I think the diagnosis came too late and time has been wasted. Wehave been through five therapists and not oneis an expert in ERP in our area. We feel like we can’t breathe andshecant catch a break from her thoughts.

    • time2cher: The International OCD Foundation has a helpful search tool for ERP therapists: http://www.ocfoundation.org/treatment_providers.aspx
      Some even offer intensive treatment, so if there’s nobody in your area who does the treatment it’s possible to travel to a place that does and complete the treatment in 3-4 weeks. Unfortunately as grannyK noted, the therapy costs a lot of money and so sadly is not accessible for many people.

      • Thanks for commenting, time2cher, and thanks Seth for your excellent suggestion. Time2cher, your daughter’s story is heartbreaking and unfortunately all too common. Please don’t lose hope. Once you find the right therapist for your daughter, she will learn how to best fight her OCD. Sometimes I think that’s the hardest part of having the disorder…..finding the right treatment providers!

  2. grannyK says:

    With my son, I noticed odd ‘habits’ that started when he was four. At the age of 21, we finally found someone who could put a name to this. Meds have helped a lot to calm him and help him manage, but we just can’t afford therapy. I make just enough that we can’t get help. So, for right now, we are stuck right there.

  3. Just was labelled “the girl who thinks too much” for 15 years before it finally got so bad that I sought help. The diagnosis came easily once I finally met with a psychiatrist. Unfortunately, then I went though a series of talk therapists (one AWFUL, one great) that proved unhelpful and enabling (or with the first one, crippling!!) before I finally found my way (another five years later) to ERP.

    20 years of slavery. 12 weeks of ERP and I was free.

  4. Lynn says:

    this is such a key issue. I noticed that there’s a walk for OCD awareness,and other efforts to educate the general public but I think something more targeted to pediatricians would be helpful. Since they are the first line of defense, they could be encouraged to give a screening test, and could also direct parents to the ocd website. It would save a lot of time if people got directed there right away. I think too many general therapists think they can help, but they don’t really have the training.

    In our case, it was my own therapist who diagnosed my son. I was talking about the therapy he was getting and what I was learning from him about his symptoms and a light went off for her. We were lucky, but it shouldn’t depend on luck.

    • Thanks for sharing, Lynn. I totally agree….pediatricians should be able to recognize the signs of OCD and steer families in the right direction. Our pediatrician prescribed meds for Dan and then said it might be a good idea to see a therapist. He had no idea there is specific therapy for treating OCD.I have heard lots of stories where luck comes into play, but you are right, we shouldn’t have to rely on luck!

  5. Susan says:

    Yes! Yes! Yes! My daughter, a college senior at the time, self-diagnosed and this was confirmed with one trip to a psychiatrist. My husband and I did much research and were relieved to read that there was good treatment for OCD (CBT-ERP). What we didn not read is that FINDING this good treatment is ridiculously difficult!!! It has been almost four years and she has only recently started to make any headway in ERP (4th therapist). We are so grateful, but sad for the time lost getting started. M.D.s who are not going into psychiatry need more than a few weeks of clinicals in the mental health areas since they are the first line of defense!!! They should be able to recognize and refer at a minimum. I recall an instance in her youth when she had a medical issue that (knowing what I know now) was a clear indicator and analyzing what the doctor said at the time, he must have had a clue. Why didn’t he at least mention it to me or refer us to a mental health professional? Society’s stigma on mental illness should not prevail among medical professionals! Personally, I have an aversion to the term mental illness. All illness is physical. Mental illnesses are not something the sufferer “thinks up” in their mind. A person cannot just stop being depressed any more than someone with the flu can just stop throwing up. Mental illnesses are a brain disorder as a result of some physical disfunction. Perhaps there would be less stigma if we called all illness physical. Thank you, Janet, for this forum.

    • Thank you for sharing, Susan. Oh, there are so many frustrating things about your story. Not having timely access to appropriate treatment, having a doctor suspect OCD and not inform you….this is all unacceptable. In reference to your comment about replacing “mental illness” with “brain disorder” I know there is a push by certain organizations for this exact change (can’t remember which ones off-hand, but maybe you know?), and I am for it also. I’m glad your daughter is finally on her way with a properly trained therapist.

  6. Tina Barbour says:

    I finally told a doctor about my disorder when I was 26, though I think another doctor suspected something was wrong earlier in my 20s but didn’t say anything. (I saw a nurse walking down the hallway with him and motioning energetically to her hands. I think she was pointing out my red/raw hands to him). But when I was 26, I was diagnosed and put on medication. I don’t remember the doctor, who was a psychiatrist, mentioning any other treatment other than biofeedback. I know she had worked with OCD patients, because she said she had seen Anafranil being used in trials in Toledo (I lived in Ohio then). This was in 1990, so I’m not sure what treatments were available then. Complicating the issue was that I moved back to Virginia 6 months after diagnosis, and with no health insurance, I was left to the resources of community services. They focused more on my depression than the OCD.

    Gosh, I hope things are better now! I realize that I was wandering in the dark back then.

    • Thanks for sharing, Tina. One would think things would be better now, but unfortunately I think they often are not. Yours is the second comment already about a dr. suspecting OCD but keeping quiet. I really don’t understand their thinking…..were they just uncomfortable bringing it up? I’m sorry it took so long for you to get on the right track with treatment..

  7. Tina Barbour says:

    Just to add a note–that nurse knew something was wrong, and the doctor didn’t say anything. But I didn’t say anything either. I wonder what I would have said if he had asked me about my hands? I didn’t want him to, but what if he had?

    • In my opinion, a caring physician would have been able to put you at ease so that you felt comfortable talking openly. The doctor missed an opportunity to do his job well, to help a patient.

      • Tina Barbour says:

        Janet, I’ve been thinking about this all evening, and I think I got my memory wrong. I’m thinking now that my doctor did mention my hands in a casual manner, and I made up an excuse about it. He didn’t push it and I didn’t either. Sorry to paint the doc in a bad light. I hadn’t thought of this episode in years. Now my OCD scrupulosity is castigating me for getting the memory wrong! 😦

  8. Susan says:

    Tina, Please don’t feel guilt for “placing the doctor in a bad light,” as you say. And do not blame yourself for not telling the doctor about your hands or for hiding the truth about your hands. He is the trained professional who should have known at least enough about ocd to know that of course you would cover up the “ugly truth” about your hands because THAT IS A FEATURE OF OCD – hiding your issues. In fact, denying a problem existed while clearly having physically damaged hands, should have confirmed to him that you might have ocd. Also know that I am not angry at this particular doctor. And I know that you are not either. He may have been the most diligent student in his class. My issue is with medical training in general which separates physical and mental infirmities. It is not his fault that he received incomplete training. We need to encourage all people to learn more about mental illnesses INCLUDING (physical) M.D.s.

    Janet, I am unaware of a push to relabel mental illness as brain disorder, but I am wholeheartedly for it! Also, I believe that the M.D. In my situation was afraid of offending me by suggesting a possible mental illness because clearly the stigma associated with mental illness permeated his realm as well as society in general. I mean why would it offend me if it was not my child’s fault? If it was simply a physical disorder. Would he have been shy to tell me if she had diabetes? Of course not.

    Thank you for keeping this blog.

    • Thanks Tina and Susan. Tina, I second everything Susan has to say! And Susan, I agree with your thought that the doc didn’t mention mental illness because he didn’t want to offend you. In my experience, I’ve had doctors talk to me about my son’s disorder by saying something like, “Your son has OCD but it’s not your fault.” They thought I’d immediately blame myself. So it can be uncomfortable for them to talk about but that’s certainly no excuse. Again I think it goes back to proper education about the disorder.

  9. Kristen says:

    My 13 year old daughter was just recently diagnosed with OCD. The first therapist claimed to be an expert in ERP/OCD, but after seeing her for a month and a half, the therapist still had no plan for us and wouldn’t do ERP. We just started seeing another therapist (an actual PhD.) would specializes in ERP last week. My daughter also just started liquid Prozac and I am hoping it will help. At the moment, ERP is extremely hard for our daughter to do. OCD makes her think the stomach flu virus is in the air everywhere except at home (she tries to hold her breath or take short/shallow breaths).
    Thank you for your blog….it helps just knowing others out there are in the same boat.

    • Thank you for sharing Kristen, and for your kind words. You certainly are not alone! There is so much hope for your daughter as she is so young and you are on the right track with therapy. Please keep me posted as to how she is doing!

  10. Susan says:

    Yes, Kristen, take heart in knowing that you are getting an early start for your daughter with treatment that can take a long time. In reading you may see ERP treatment referred to in numbers of weeks, but my experience has been that ocd does not always exist in isolation. It can spawn other issues along the way that must also be addressed, which can lengthen the treatment. By starting early, you may avoid a great deal of that. I did read an article recently (I am sorry I cannot remember the link for you) which stated that ERP in teens can be much harder and take longer due to the regular teenage issues and hormones, etc. Be patient and stay on target. Slow and steady wins the race!

    Janet, I have experienced the “It’s not your fault” comments as well. I remember thinking “I know it’s not, I was a great mother!” Haha, of course I did not say that as it would have seemed that I thought myself to be perfect which I did not. I did know that my husband and I had raised both of our children in a way that could never “create” this kind of thinking and low self-esteem. Quite frankly, the idea is preposterous! However there are many people who come from horrible situations and grow up to be well rounded members of society. I err on the side of heredity rather than environment.

    I think that people assume mothers will blame themselves because for so long doctors and society HAS BLAMED MOTHERS. The first scene of the movie, The Aviator (story of Howard Hughes who had ocd which became debilitating later in his life), is he and his mother. She is bathing him and scolding/warning him about germs. The suggestion being that her words set this whole terrible disorder in motion. Sure, because he had the disorder, these words carried much weight, but they are not the cause of the disorder (my opinion). And it’s not just ocd, but all mental illnesses – throughout history they have been seen as the result of some tragic event, or a lapse in care, or abuse/lack of care. In other words, they are created, can be avoided, etc. So if you really were a good parent, you would have protected your child better.

    Pardon my rambling, I guess I needed to vent.

    Thank you for being a pioneer in the fight to educate and enlighten the world on OCD, Janet!

    • Susan, I nodded my head throughout your whole comment. I never even thought to blame myself until a doctor said, “It’s not your fault.” Thank you for your supportive words……..obviously we still have a long way to go in the “educating and enlightening” department!

  11. 71º & Sunny says:

    Oh Janet, it was soooo scary seeking help for the OCD, both in 1996 when I was first diagnosed and then again in 2009 when I finally sought CBT/ERP. The first time I got treated, I saw a therapist who had no experience at all (or any real knowledge of) OCD. The therapist admitted this to me and because I was afraid of ERP, I stuck with this therapist and just did talk therapy anyway. It was pretty useless of course. I blame myself, because I knew better. I knew what the right therapy was, but I was just too afraid of it. I do think the therapist should have advised me though, to seek an expert instead of just trying to work with me with talk therapy. I would have taken this therapist’s advice to heart if I had been pushed to get the right kind of treatment in 1996. Oh well. Thank goodness I finally got the right kind of treatment. It just took me 13 years to get up the courage to do it.

    • Thanks for sharing, Sunny. I don’t understand how that first therapist could have felt it ethically correct to “treat” you when he/she knew it was not the proper therapy for OCD. I don’t blame you at all, I blame the therapist, who as you say, should have referred you to an expert on OCD.

  12. The Hook says:

    I haven’t been around lately, but you’ve remained a staunch defender of truth and healing, my friend. Good for you.

  13. Faye Zare says:

    Hi,
    I am new here and need help to find treatment for my teen son. He has OCD, severe anxiety and depression. It strared with OCD and not being treated right, it got to anxiety and finally depression. We are sick of incompetent doctors and therapists. Medications have not helped either. My family is in crises. Please help.

    • I’m so sorry to hear your son is having such a tough time. I would suggest visiting the IOCDF website as well as Beyond OCD. Their links are located on my sidebar.They are both excellent resources and give you suggestions how to locate competent therapists. You can call them also. I know it’s frustrating but please do not lose hope!

      • Faye says:

        Dear Janet,
        Thanks for the info. I will look into them. The only treatment we are doing right now is neurofeedback. No medication or talk therapy. The CBT never worked on him. He believes doctors do not understand what he has, and I am afraid he is right. He is very smart. he does not take anything that does not make sense.
        He is smarter than everybody we have seen so far. He is very frustrated that there is no real help for him out there. But, we have not given up and thanks for the people like you who are there to help us get through. If I find anything that works, I certainly share it with all. Thanks again.

      • Hi Faye, I’m sorry to hear you have not found the right treatment yet. The frontline treatment for OCD is Exposure and Response Prevention Therapy (a specific type of CBT) and you need a treatment provider who specializes in this therapy and the treatment of OCD. I’m glad you are not giving up, and good luck as you move forward.

      • Faye says:

        Dear Janet,
        His CD is not ritual. It is racing random thoughts. It is over thinking every thing he does. Including eating, dressing, bathing, talking, etc…. It is not something specific or a specific situation. I do not know how ERP would help. He would be exposed to what? He believes his main issue is anxiety. He just does not know how to stop his racing thoughts. He says he feels his brain is on fire 24/7. Do you still think ERP is the way to go?

      • I am not a therapist, but will tell you that my son also had issues with eating and over-thinking everything. OCD comes in all shapes and sizes, which is why you need a competent therapist to help you sort this all out. If your son does indeed have OCD, then ERP Therapy, done correctly, is the therapy of choice. The important thing is to find a therapist who really understands OCD and its treatment.

      • Faye says:

        did you find the therapist?

      • If you are asking if my son ended up with a good therapist, the answer is yes….but it was not an easy journey.

      • Faye says:

        I live in South CA. Is your therapist close to me?

    • staticcalm says:

      Faye,

      I’m not sure how far you have gotten in your treatment for your son. I’ve suffered from general anxiety most of my life and encountered a bout of Panic and Agoraphobia the summer after I graduated from high school. I was hit with moderate OCD at the same time. With the anxiety came a slew of obsessive thoughts, often ruminations about hurting others, being a good person etc. However, they were not always related to compulsions as they are now. Likewise, I’m not a therapist, but when I read your post, a light-bulb went on. Your description reminded me of what some people refer to as “Pure O” or Purely Obsessional OCD. http://en.wikipedia.org/wiki/Purely_Obsessional_OCD

      Personally, cognitive behavioral therapy, including thought replacement and desensitization did help for many of these purely obsessive thoughts. In other words, if the thought came on I could counter it by simply not responding to it at all. I remember reading that it was like telling yourself not to think about something. The more you fight the thoughts and tell yourself to stop thinking them, the more difficult they ruminate and become difficult to control. I’m still not sure if that’s what you were referring to at all, but I figured it was worth a shot.

      -S.C.

      • Thanks for sharing your insights, S.C. We can all learn from each other……

      • F. Zare says:

        Hi S.C., Thanks for your input. We are not therapists, but I think only we know what we are going through. Does it matter what it is called? I know the symptoms that my son has and I really do not care what it is. Not any more. I just want him to get better. He has never had panic attacks. His issue started with over thinking everything. Never sure of his opinion even though he has never been wrong (school). He is super smart and deep. Way beyond his age. His thoughts are all over the place. They are not about harming others or himself. It is about him and how his life got ruined and all his friends are happy, continuing their path and he got behind. He does not have rituals. He is perfectionist, but I would not call him extreme, because I have seen worse. he likes to be neat and organized, but he does not fuss if something is out of its place. He just over thinks everything and he gets lost and stuck in that process. Not being able to go to school is killing him. He is very depressed. Regarding CBT, he said his brain always finds a way to beat the technique, so it only works a few times, then it does not. May be the therapist was not good, I am not sure. Because he could not make it work, he does not want to do it anymore.

        .

      • Faye, I hope some of your new leads pan out. I understand your frustration and just wanting him to get better. An accurate diagnosis is important, of course, so that your son can hopefully be given the right treatment.

      • Faye says:

        Hi Janet,
        I am talking to Jon. He is a wonderful person.My son is refusing to talk to anyone. I need to work at it. Thanks for the tips. He is great. He is not sure he can help. He wants to talk to my son. That is my challenge now. How long did it take for Dan to get better after you found the right person?

      • Faye,
        Dan’s recovery was complicated by the fact that he was on medication that was hurting him. Once he was off all meds and only focused on Exposure and Response Prevention Therapy, he improved dramatically,and quickly.

  14. Mike M says:

    I have OCD:obsessing about painful things 24/7. ERP is not possible because I can’t control my thoughts. Good old talk therapy was very helpful to me, but I have to make clear that it’s not “just talking about my problems,” but having the therapist elicit a heartfelt description of my feelings and reactions in a situation, which immediately activates the part of the brain (both T’s brain and my brain) that sees a better way through. Talking about problems in Talk therapy is not pointless; it is done to stimulate new ideas about making it through those problems. It can be very effective for OCD, and in the case of OCD that is incompatible with ERP, it has a special relevance.

    • Hi Mike, I’m glad you found therapy that worked for you, and obviously different approaches might help different people. I am not a therapist, so don’t like to comment too much on specifics. The one thing I will say is in regards to your sentence “ERP is not possible because I can’t control my thoughts.” ERP is not meant to help you control your thoughts, it deals more with how you react to thoughts, which none of us can control. Again, glad you found what worked for you.

      • Mike M says:

        Hi, thanks for your welcome, Janet. I just mean that I can’t do ERP because I can’t control my “exposure level” or “response”–I have no control what thoughts I am exposed to, nor can I postpone a response to them.

    • Faye says:

      I believe a skilled therapist could be very effective in any mental problem. The challenge is to find one. We have tried several and given up. Absolutely worthless. And the sad thing is that they were all referrals….

  15. ateamaemae says:

    I have a little girl who I am really worried about. I am fairly certain she has OCD. Everything that I am reading is pointing to this. I do not even know where to begin for her. She is a teenager and she is really scared. Her dad and I handled her the way we handled all our teenagers, we told her that she was ok, she was taking her fears, worries, guilt, way too far. That she had nothing to feel guilty about any more now that she had asked for forgiveness. Yet, she has taken her guilt and fear to a level that is something that we cannot understand. She has become quite obsessive about it and suddenly is wanting to protect her littler brothers and sisters from every kind of temptation imaginable. She imagines things that may have happened, or could happen and she confuses herself. She panics that there are things that are not proper for their little minds in our home. She does not trust us to protect their minds from things that she never seemed to be bothered by before. This has all happened in one week’s time. We have seen small signs of this before, but I am talking VERY SMALL. This has gotten very out of control. She is frightened and she is scaring us. We have tried to talk her into seeing that she is ok and everything will be ok if she just changes her pattern and does some fun things or sweet activities to get her mind off of her guilt and issues. We are afraid she has put herself into a rut and her mind into a glitch that she cannot seem to pull herself out of. She is a very good girl who does not ever cause us problems. But I fear we have not understood what she is going through by reading some of your page and other things I have been reading tonight about OCD. I would love any advice you can give me about how to proceed with our first steps. I am worried about finding the wrong help for her and pushing her further into this. Thank you so much!!

  16. I’m sorry you and your daughter are going through a difficult time right now. If she does indeed have OCD, please know that with the right therapy, it is absolutely treatable. Those of us without the disorder find it frustrating and hard to understand why we can’t just reason with our loved ones. Unfortunately trying to talk your daughter out of feeling or acting a certain way won’t help. Telling her not to worry is like telling someone with asthma to stop having trouble breathing.
    I think it’s great that you are educating yourself about the disorder and I would recommend contacting the IOCDF or Beyond OCD (both links are on my sidebar) for help finding a competent therapist in your area. They also provide questions for you to ask potential treatment providers so you can find someone who really understands OCD and its proper therapy. Good luck, and please keep me posted.

    • ateamaemae says:

      Thank you so much, I feel like you are such a blessing! I have spent a great deal of time reading at the site Beyond OCD already and so many of my daughter’s fears are listed there. I, of course, realize that I am not qualified to diagnose her, but I feel like we are on the right track. I have asthma and your word picture is so appropriate, I appreciate you, very much. I will keep you posted. Thank you!!

      • I appreciate your kind words, thank you. You are a caring mom who is doing what needs to be done for her daughter…..she is lucky to have you in her corner. Family support is so helpful when fighting OCD.

  17. ateamaemae says:

    Janet,
    Could I bother you to ask you one more question? My daughter has an extremely busy couple of weeks ahead of her with summer activities. Her father and I are already researching therapists in our area. I am not sure what to communicate to her at this time. What I have read has given us so much hope. I did not know if I shared this information with her if I was going to cause her to worry about having to talk with a therapist or if she will just be so relieved to have some direction. I would guess that she will be happy. I thought about sharing the article for teens that I found at Beyond OCD. I thought that might help her until we got everything in order, but I didn’t want to bring on new anxiety in her mind. I am not reading any advice on what to do prior to treatment.
    Thanks again!

    • I’m not a therapist, but my own personal opinion is to talk to your daughter and share whatever sites and information (especially directed toward teens) you have. I would think that would make her feel less alone. Also, she needs to be “on board” when she sees a therapist, and just springing it on her, in my opinion, just doesn’t seem right. The more you all talk about your thoughts, fears, opinions, etc. about the road ahead, the more I think it will help you all. Those are just my thoughts! Maybe some readers will chime in…….

    • sethgillihan says:

      I thought I’d chime in from a therapist’s perspective. I think it’s a really important point, ateamaemae, about preparing for treatment. There are many very useful websites out there, and the BeyondOCD teen-oriented page about CBT is great. I include on my website some information about what to expect in ERP (http://sethgillihan.com/wp-content/uploads/2013/06/Exposure-and-Response-Prevention-for-OCD.pdf). I think Janet’s ideas were wise about providing information and making sure a person is as “on board” as possible going into the treatment. It’s usually a little scary going into something new and unknown, and demystifying what’s to come seems to be helpful to most people. All the best to you!

  18. Susan says:

    To Faye, Mike M, ateamaemae, and all…

    I am not a therapist, but I “play” one in real life, lol. Seriously, as parents of children with OCD, we do become psuedo-experts (well- educated) on the disorder because we delve into reading, learning, questioning,and studying it and its therapies. I have read half of all books written on the subject! (not really, but it seems like it) There are two which I highly recommend. TORMENTING THOUGHTS AND SECRET RITUALS by Ian Osborn, M.D. is the best and most compassionate and hopeful general book on the disorder that I have read. The other is a juvenile literature book, but it is NOT childish (not a child’s picture book). It is a must-read (in my opinion) for anyone wanting to better understand the process of CBT/ERP and HOW it works. It’s called WHAT TO DO WHEN YOUR BRAIN GETS STUCK: A KIDS GUIDE TO OVERCOMING OCD by Dawn Hueber. This book really gave me hope. I had read descriptions of ERP and thought I understood it, but this book gave analogies/examples of the process and (as an educator who knows how material is learned) I could see aha! exactly how it WOULD work.

    Also to address your fears about ERP not working due to your child’s issues not being action-based, but thoughts only, I would like to say this. All OCD involves thoughts like these and you may only know of that part of your child’s OCD at this time because they will keep a lot hidden from you due to fears of being unlovable, etc. They may indeed have several action based issues. And even if they have pure- O (all obesessions/no compulsions), the recommended treatment is still ERP but with modifications which are explained well in the children’s book I mentioned.

    And one last thing… Sometimes I believe ERP doesn’t work right away with OCD because the sufferer may have other issues which need to be dealt with first. This happened with my daughter. She self diagnosed her OCD in college and we started ERP treatment right away. She did not make progress though. She had another issue that interferred, a secret eating disorder. While her therapist tried to address her OCD she secretly was “dying” for him the address the “elephant in the room.” Six months later the anorexia was severe and she went to inpatient and residential treatment for a month, followed by a year of intensive outpatient therapy. She is only now starting ERP for OCD again and having a much more hopeful go of it. If you do not have any experience with eating disorders, you may not understand why it was so important to address it first and I will not go down that rabbit hole here, but suffice it to say that it was! I am not suggesting that your child has and ED (not everyone with OCD has an ED, but many, many who have an ED do also have OCD), but they may have some other issue that is interferring with OCD treatment. This is just something to consider.

    Be informed, be hopeful.

    • Thanks so much for sharing, Susan. I’m sure your story will be helpful to others. It’s amazing how educated we parents can become once our children are suffering. I’m glad ERP Therapy is going well now for your daughter.

    • Faye says:

      I am still looking for a good therapist in my area. I was referred to one doctor who was highly recommended, but he charges $345 an hour. I cannot afford that. I just cannot afford to do trial and error with therapists any more. My son is very frustrated and disappointed and he is a lot worse than 2 years ago when all this started. he does not want to talk to any one any more.he is tired of telling his story to strangers. His life has come to a total halt
      How do you know who is good? When I talked to the ones we went to, they all knew what he had, they had all helped other people with the same issue and nothing was delivered but disappointment.

  19. Kristen Yule says:

    Does anyone know of a good, reputable intensive outpatient or inpatient program? I live in Michigan and there aren’t any around that I know of. My 13 y.o. daughter refuses to give up her rituals or do ERP. She believes the stomach flu virus is in the air everywhere. If I bring stuff into the house she freaks. If I go to the store, mall, etc. she freaks. She won’t go anywhere. Her rituals include avoidance and taking short, shallow breaths instead of breathing normally. Not sure how an inpatient setting would work, seeing as though she can’t function outside of our house. My husband and I are at our wits’ end, as is her younger brother. But we don’t know what else to do since she will not do her ERP homework her therapist has provided. Any feed back is welcomed.

    Thanks.

    • Hi Kristen, I would suggest contacting the IOCDF and/or Beyond OCD (both links are on my sidebar) for suggestions as to the best way to help your daughter. Even if you felt strongly that a residential program was the way to go, her age is a factor. Please don’t lose hope……once she is on board with treatment she will improve. I know it’s hard right now, but keep searching for the right fit for treatment for her…….has she read any of the books geared for kids/teens about OCD? Those might give her some extra insight into her disorder and give her some incentive to fight. Good Luck!

      • Kristen Yule says:

        She refuses all and any help. She told me she would rather live with OCD ruling her life than to do ERP, because it’s easier. We can’t get her to do anything at the moment and alll the IOPs are out of state. Trying not to lose hope, but it’s really hard.

      • I’m sorry things are so difficult for your family right now. I would still suggest contacting the resources I mentioned. At the very least, you could get some advice as to how you should deal with your daughter (for example, enabling). Good luck, I’m thinking of you.

  20. ateamaemae says:

    Thank you to Susan, sethgillihan and again to Janet for your information and help for myself and my daughter. I have been doing so much research since I last came here and failed to check back. But I really appreciate all the support here!! It has been quite overwhelming for us all, but I have taken all of the advice given here and we did share with our daughter. At first she was even more upset than she had been before we shared with her, but she is so much more at ease now. She really feels like we are on her side and working together with her to understand how she feels and she actually says that she wants to find a counselor who will work with her now. At first she did not want to share with others outside of our family, but now I think she understands that no one will look at her in a negative light and that her dad and I do not think badly of her but only want to give her help and some new tools to develop new ways to handle her emotions and her anxiety that she experiences so often. I think she actually is feeling hopeful now a lot of the time. We have had out of town family company and that has been a good distraction, but they will be going home, so this evening she was getting anxious again. I assured her that we will get through this together, so now we will need to really buckle down and find her someone that she can feel comfortable with. We are praying that we can find a counselor that she will react well with so we are back to figuring out what our options are again. I just don’t want to jump into this before we know that we have found the doctor that will be the correct fit for her. But thank you all for your help and concern.

    • Thanks for the update, ateamaemae. I think that’s great news that your daughter is willing to get help. Good luck as you search for a therapist and please keep me posted!

    • Yes, ateamaemae, that is great news. I’m glad that Janet’s wonderful blog is such a resource. I was struck by what you said about when you shared things with your daughter, how at first she was even more upset, and then she was much more at ease–it reminded me of what typically happens in ERP treatment! First things are harder as the person takes a stand against OCD, and ultimately things get easier. Sometimes I compare it to paying a credit card balance: Doing OCD’s work is like being eternally in debt and only paying the interest, whereas doing ERP is like making bigger payments and actually paying off the debt. I don’t know if that analogy resonates with other people. In any case, I wish you and your family all the best throughout this process!

  21. ateamaemae says:

    That really makes sense to me and I am so touched by everyone here taking time out of their days to help others. I keep coming here and reading what others are going through and how you all reach out to each other to help and I am so thankful to Janet and to you all!! Bless you all!! I hope that our little girl will get the help that she needs and that someday we will be in the position that we can reach out to help others, too.

  22. Nicole says:

    I agree with everyone else here – fantastic blog! OCD is very hard to understand for those who don’t have it. The thing is that most people who have OCD are fully aware that their obsessions and compulsions don’t make sense. But try to explain that to someone who doesn’t understand OCD, and they’ll just say “If you know it doesn’t make sense, just stop doing it. Simple as that, problem solved.” But as you and I both know, it is NOT simple as that. If OCD were that simple to get rid of, NO ONE would have it – it is an absolutely MISERABLE condition to have, and I only WISH there were such a quick fix as “just get over it” or “just stop doing those things.”

    I have OCD myself, and my experience was actually very similar to your son’s. I was always checking to see if I had lost/dropped something, and eventually the idea of even throwing trash away freaked me out, so I inadvertently became a hoarder. At one point, my OCD got so bad that I couldn’t even leave my house for almost a year. Not only that, but at its worst, I actually had to check the driveway and cars every time ANYONE left the house, and usually check the people’s clothes and shoes too, and this would often be followed by a phone call 5 minutes after they left to make sure they didn’t have anything of mine in the car or on their person. It was exhausting, and I didn’t even have a life anymore because my anxiety level was pretty much at a 10 all the time. I had a therapist for a couple of months, and she was all about talk therapy, talking about my childhood and emotional fears. While she was a great person and meant well, I only got worse during this time, likely because talking and talking about my compulsions and fears was just reinforcing them instead of diminishing them. When my OCD got so bad that I had to move back in with my parents (I was in my 20s), I had to find a new therapist. The first one I saw didn’t seem to have any understanding of OCD. She blamed and shamed me for making everyone else’s life hard, and told me that I had a ZERO percent chance of getting better without heavy doses of medication (which I did not want), and she was assembling a “team” of people to take care of my meds, come into the house to do a cleanup, etc. She was very gung-ho about addressing and putting Band-Aids on the symptoms rather than doing anything to really treat the condition. I knew something was not right with her, so I stopped seeing her almost immediately.

    When I found an OCD specialist who was very hardcore with ERP, I was surprised at how quickly I started to recover. Granted I was working very hard and spending hours every day on my own with the ERP as well, but I was actually able to function at a reasonable level again inside of a month! The OCD wasn’t gone by any means, but we had gotten it to the point where it was just a moderate hindrance rather than something that controlled my entire life. And guess what – I didn’t need to take a single pill for this to happen.

    I only wish someone had told me about the effectiveness of ERP earlier – then I wouldn’t have wasted months and months trapped inside my room, seeing the wrong therapists, etc.

    I think there needs to be some serious awareness raised about the effectiveness of ERP with OCD. The truth is that a lot of the time, talk therapy just doesn’t work for this condition – it’s great for depression and even PTSD, but the very nature of OCD already involves enough circular reasoning that the last thing that you need is to focus on the flawed logic again and again in therapy. I’m thinking that the best thing for severe OCD is to do the ERP first, until the person can function normally again and the compulsive behaviors are gone, and THEN do the talk therapy to address the underlying fears. More therapists need to be educated about OCD as well, because truly, with this condition, if you have the wrong therapist, it can actually do more damage than not going to therapy at all.

    I am so glad that your son is doing better now. Every success story gives hope to all of us!

  23. Thank you so much for sharing your story, Nicole, and I’m so glad you eventually found ERP Therapy. Of course, as you say, wouldn’t it have been great if you had the right therapy from the start! It’s unacceptable that so many OCD sufferers are being mistreated. We all need to keep spreading the word that OCD, no matter how severe, is treatable, and ERP Therapy is the front line treatment for the disorder. At the very least, all therapists should know this! Thanks again for your insight.

    • Nicole says:

      Thank you for your words, Janet – I really appreciate it! I read recently that only 50% of people improve at all once they have OCD, and only 10% really recover from it. And I’m willing to bet that ignorance about OCD, especially within the psychiatric community, is at least partially responsible for that. And that’s really scary and sad to me – that people with so much potential and so much to contribute to the world could just end up wasting away from a disorder that is actually treatable.

      When I finally got into ERP, I was able to function again within a month, and I was pretty much back to my old self within about three months. Absolutely amazing – compulsions and rituals that I had developed over more than a year were just undone within weeks. It was hard, and even painful at times, but it definitely worked. And I was in BAD shape, so I really think if it worked for me, it could work for just about anyone who is willing to try it.

      My experience was that I actually saw three therapists before finding one that worked with ERP – the two that I mentioned, and a third. The third one, right after my initial assessment, saw me checking and re-checking the couches and the room for at least 5 minutes, and she told me that it was then that she realized she wasn’t the best person to deal with my disorder. She then referred me to the therapist that really helped me. I am SO GRATEFUL that she had that much of a conscience that she was able to do that, when she could have just continued seeing me and taking my money. That is what the second one was about to do – she saw how bad my condition was, she clearly didn’t have a clue about OCD, and she was all ready to use me as her OCD guinea pig rather than having the ethics to refer me to someone who was actually qualified to treat me. And I’m sure she is not the only therapist out there like that, which really makes me sad – vulnerable people with OCD are going to these so-called professionals and only getting worse, because the therapists care more about making money than doing the right thing. In my case, I was actually a little bit traumatized by my appointment with her, and all of the negative and shaming feedback that I got from her (she said that I seem to think I’m “entitled” to hoarding in other people’s homes, and mentioned that my parents should not be obligated to take care of me at my age – as if I really needed to hear that, and as if living at home at 28 didn’t already make me feel bad about myself without her rubbing it in), causing me to shy away from any more therapy for months – I think two whole months were wasted there. And it breaks my heart that this same thing has probably happened to countless others too, all because some therapists see their profession as more about the bottom line (or professional ego – wanting to add an OCD patient to her resume) than about their patients. I wonder how many people she, and others like her, have seen, who didn’t end up finding a qualified therapist eventually and just kept getting worse and worse until they were entirely paralyzed. I agree with you – everyone who can needs to raise our voices and STOP this from happening, as it is absolutely unacceptable. It’s one thing for the general public to be ignorant about OCD, but it is just absolutely egregious that therapists are ignorant about it and treating people incorrectly, making them worse. I cannot say enough how grateful I am to the OCD specialist that I worked with, as well as that third therapist, who saw that my problem was over her head and found me the help that I needed. Had it not been for them, I have no idea where I would be today.

      People like you are really making the world a better place with blogs like this. I only wish there were some way to increase visibility – there is just a disgusting amount of ignorance in the world when it comes to OCD, and there are so many people I can think of off of the top of my head who need to read your posts.

      • I agree with everything you say, Nicole, and I appreciate your support. I know it’s amazing how quickly ERP Therapy can work. I also realize how tough the therapy can be and know you must have worked very hard and been totally committed to getting well. Good for you! And I’m certainly all for increasing the visibility of my blog. Feel free to share it with anyone and everyone you know 🙂 !

  24. Grackle says:

    “In my son Dan’s case, he correctly diagnosed himself with OCD, but then met with a therapist who, unbeknownst to us, didn’t know how to properly treat the disorder. Appropriate treatment was therefore delayed, and of course his OCD worsened. He also became disheartened. Why wasn’t the therapy working? Was his OCD not treatable? ”

    This was me exactly. My OCD started up in childhood about 20 years ago, I self-diagnosed about 15 years ago–and I only just got involved with CBT in the last couple of years. I AM improving but of course, it is a very hard uphill battle. I am just so grateful to have found a fantastic doctor who actually knows what OCD is instead of trying to treat me with talk therapy. When I was younger I dealt with too many doctors who were frankly ignorant about OCD and it was incredibly discouraging and depressing. Why couldn’t they just TELL me that they didn’t know enough about the disorder? Frequently I was way more informed than they were, but not nearly enough to treat myself. I had no idea what was happening and really did think that perhaps my OCD was just untreatable!!

    • Hi Grackle, I wish I could say your story is unusual, but sadly there are still so many OCD sufferers out there who are being mistreated. I agree with you totally; if a therapist doesn’t know how to treat OCD, they should refer their patient elsewhere. Unfortunately I think many therapists don’t even know they don’t know how to treat OCD! We have a lot of work to do in spreading the word about proper treatment for the disorder.

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