A version of this post first appeared in May 2013:
Over the years, I’ve connected with many people who have obsessive-compulsive disorder. It seems to me that almost every one has some kind of story to tell about their early experiences reaching out for help. And they’re typically not positive stories. They are accounts of misdiagnosis, mistreatment, or both. 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 people with OCD will attest, asking for help, especially that very first time, is a difficult and scary thing to do. In some cases, those with OCD muster the courage to tell a loved one or a professional about their obsessions and compulsions. In other situations, 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 those with OCD not only leery of future treatment, but hopeless. What’s the point?
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 (ERP) therapy, but finding the right help was far from easy.
How much smoother the journey back to good health would be if all health-care providers were able to properly diagnose obsessive-compulsive disorder and point those who are suffering in the right direction. 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……..
Two of my kids (as young adults or teens) had experience with the eclectic approach…still looking for that true ERP therapist. In every case, it was really bait-and switch.
Thanks for sharing, and I am so sorry to hear that your children have not yet found the right help. Have you checked out the IOCDF website? They give a good list of questions to help find a good therapist, though of course as you know, you won’t really know what they’re like until you go to them. TheIOCDF also maintains a list of therapists, and those who have been trained at the BTTI might be worth your consideration. Good luck and I wish your family all the best! Help is out there; it’s just not always easy to find!
Thank you. Now busy adults, my kids don’t always see their need for help and pursuing it is in fits and starts. I will try to guide with your advice. Thanks.
I have several members of my family who suffer from OCD ranging from myself who has to check things multiple times before leaving the house to a cousin who comes home from work and counts the pine cones in her yard every day. Most people just don’t understand what it is like.
I agree, Henry, most people do not understand. I hope you and your family members have been able to get some help.
I was diagnosed at 17. Before that, I had seen therapists for 5 years. They kept trying to see if I had blocked being molested since my outer symptom of OCD was excessive hand washing. Once diagnosed I was just put on meds. It wasn’t until I was 26 that I got the proper ERP therapy. And I only found out about that b/c my sister had just graduated with a social work degree and got a job at the inpatient OCD clinic at Rogers Memorial Hospital. The therapist I see now (when I need a “tune up”) originally worked at Rogers with my sister and is now in private practice. He does STRICT ERP in his practice. He is listed on the IOCDF website you mentioned above. It’s a great resource.
Tracy, Thank goodness your sister worked at Rogers! What a story! I’m so sorry you went so long without the right help but am so glad you finally got on the right track. Thanks for sharing!
Hello! Just found your blog and have read some of your posts. I am 30 years old, from Sweden. Early spring, last year I went to see a therapist. She thought my biggest problem was anxiety, not OCD. I got to see a doctor who put me on a small dose of medication. It wasn’t anywhere near enough. It ended with me going to the ER, with strong suicide thoughts and severe anxiety. It took them like 10 minutes to diagnose me with OCD. After that, I spent 4 weeks in the hospital, trying to gain some strength that I lost during those 8 months of therapy that only made things worse and filled me with even more anxiety and doubt than I had when I first came there.
I´m so happy I found this blog. Thank you for sharing!
Thank YOU for sharing and I’m glad you finally got the right diagnosis. Your story sounds similar to my son’s in many ways. I hope you are getting the right therapy (ERP) now and hope to hear from you again!