A lot of people suffering from OCD have spent countless hours scouring over the internet looking for any resemblance of familiarity in their experiences. They have a great deal of insight that something is not working correctly. It’s this sense of isolation that often drives them to finally make the decision to get help.
Tragically, so many people who truly suffer from OCD will see a professional, and work up the courage to talk about some of the most difficult thoughts they experience, only to be told they don’t have OCD. Many will be misdiagnosed and mistreated. All too often they’re given the wrong treatment and, sadly, their symptoms get worse.
I’m no stranger to this myself, both from my experiences living with OCD and seeking treatment, and from my professional life as an OCD specialist. I’ll talk a bit about how I have seen these worries occur, and what you can do about it if they feel familiar.
My own experiences
I vividly remember one of my earliest therapy experiences. I knew that I had OCD. I had read so many books on the topic. I had suffered over a decade with this, and I knew it inside and out. There was, ironically, no doubt in my mind, for once.
When I finally saw a therapist who claimed to have experience treating OCD, I remember crying and telling this therapist how my life was consumed with fears of horrible things happening that would all be my fault. I was in a constant state of panic and unease. I knew I was taking things to the extreme. I kept rewashing things so much that my hands bled. I was not being the mother I wanted to be because I was so consumed with intrusive thoughts.
However, they only validated my fears and compulsions as “normal” behaviors of a new mother. I didn’t even have a chance to tell her what I considered the scariest of all the thoughts—after I saw her response to the smaller ones, I just knew she would not be able to handle the most significant ones.
I spoke of how I allowed no one to watch my child, and that I was exhausted from waking up all night to ensure my child’s safety. I was obsessing over so many things. Not only was I told that this was all normal, but my therapist even told me that I should continue living the way I was. At one point I actually excused myself. I went to the bathroom and had a panic attack and cried.
When I returned she asked what happened. I told her about my anxiety. I told her how I would spend hours shaking from anxiety, that I was immobilized with fear. I asked about medication, only to be told that I didn’t need it. So what would the treatment be? According to her, it didn’t seem like I needed it. I was being a good, safe mom. In some ways this was reassuring, but the positive feeling vanished quickly.
I left that session feeling more broken than before. I had hopes of getting help, and finally treating this condition that was eating my entire life up. It had taken years for me to build up the courage needed to even attend that session, let alone talk about some of the things that I was experiencing.
Unfortunately, this was not the only experience in which a therapist reassured me that I was actually doing something good and that I shouldn’t seek to change anything about my life or mental health. I disclosed my fears of terrible things happening to my children if I left them alone with anyone, with another therapist later, and they actually said that if I had these feelings I should listen to them. This left me in a state of confusion—how could these fears that left me suffering horrible be a good thing?
Again, I felt alone, like no one understood me. I was so confused. It seemed like everyone wanted me to do general “talk therapy.” I continued doing this for a time, but time and again I was met with misunderstanding and empty reassurance. In the moment it felt good, but my fears and suffering always returned. Deep down, I knew I had OCD—and I had read enough to know that the treatment was very different from what I was engaged in.
My experiences as a professional
Many people that I have had the privilege to work with have shared similar experiences. They have felt heartbroken after finally gathering the strength to seek help, only to be mislabeled, mistreated, and left questioning what they knew was true.
“Kendra” was a young woman who reported classic signs of OCD to me, from her high school years and beyond. She described nearly every imaginable obsession and painstaking compulsion that one could experience. She finally met me after several attempts at finding help, including mental health hospitalizations. She came to me exhausted, tormented, and in need of an accurate assessment of her symptoms.
Kendra had recently been an inpatient at a hospital and had been diagnosed with schizophrenia, Bipolar II Disorder, and a multitude of other things. She was terrified for her future. She was newly married and had wanted a family. She was housebound and unable to work. Someone who took a great deal of pride in her appearance and had been an avid bodybuilder prior to the onset of her symptoms, she gained a great deal of weight as a result of the multiple medications she was placed on. She was depressed and felt that working with me was a last-ditch effort to try and figure out if she could be helped by therapy.
After a comprehensive assessment, it didn’t take long for me to see that Kendra was misdiagnosed, not once, but several times. This young woman was given some of the most serious diagnoses and was being actively treated for these things, but the problem was that she didn’t have these conditions. Thankfully, after months of intensive ERP for OCD and a medication management plan with a new provider, she began to see astounding results. She began to thrive in her life again and live the life she had always dreamed of, all because she was equipped with the correct treatment and diagnosis. Today, Kendra lives life in remission and recovery, managing her symptoms day to day with the skills she learned in ERP.
Not everyone who says they understand OCD actually does
Many therapists will claim that they treat OCD—however, do they use ERP? Do they even know what ERP is? If not, this is a huge red flag.
Currently, ERP is the gold standard treatment method for OCD. ERP works to provide long-term relief from anxiety and distress. By facing your fears head-on and allowing distressing feelings to be present, you can learn that you are able to tolerate them, without horrible things happening. The idea is that we are learning to experience uncomfortable emotions and habituate to them without relying on compulsions that only make our symptoms worse.
The goal of ERP is not to get rid of intrusive and unwanted thoughts. ERP teaches that everyone has similar thoughts, they just respond to them differently. The more a person with OCD responds to the thoughts, or engages with the thoughts, the more likely they are to return again and again. The goal of many talk therapy sessions, on the other hand, is to engage with and challenge unwanted thoughts and patterns of behavior, which may be very effective in the treatment of other disorders, but only makes OCD symptoms worse over time.
If you feel that you are misdiagnosed or being treated with the wrong type of therapy, it is so important that you get more opinions from other professionals. Do your own research, look up specialists in your area—people who have a proven track record for helping people with OCD. The IOCDF website is an excellent place to locate resources.
ERP will gradually help you fight OCD
A successful ERP therapist will guide, support, and motivate you. They will come up with reasonable and creative ways for you to gradually face the fears that are holding you back from living the life that you want to live.
If you have any questions about starting ERP therapy or need more information about the treatment, please don’t hesitate to book a free 15-minute call with our care team. On the call, we’ll assist you in either getting started with a licensed therapist at NOCD who has specialty training in OCD and ERP or connect you to other resources that might be helpful.