5 reasons OCD gets misdiagnosed, explained by OCD specialist Alegra Kastens

I feel like a common misconception about ocd is that you have to be neat and tidy all the time. For years I thought I had more than just anxiety but whenever I mentioned the thought of ocd to my parents they would just brush me off and tell me I’m too messy to have ocd so for years I believed having ocd just meant you were clean and afraid of germs. It wasn’t until recently when my doctor diagnosed me with it and told me there’s a spectrum and each person with ocd isn’t going to behave the same way.

omg same for me. I would have NEVER in a million years believed that I have OCD until I was listening to a NOCD podcast and went wait a minute. the misconceptions are intense

I identified OCD in my child many years ago. I realized when my kid had a major crisis event that sort of snapped their ability to function. That was ten years ago when they were 9 years old. They were so disregulated that we were considering PANDAS (and even though we never were able to get a clear diagnosis of what was actually causing the crisis we have slowly over many years, been able to address the individual manifesting behaviors when they seemed to be the most critical to deal with. When I heard of “confession OCD” I saw it in the blink of an eye and my awareness of OCD flew open. Beginning in Kindergarten I noticed a quirk that my kiddo was developing. Every day my child would “confess” every little detail that they felt bad about from the day. “I didn’t put my markers away when the teacher told us to”, “I pushed a girl too hard on the swings and she fell”, I didn’t eat my snack at break.” “I didn’t go out to play when teacher told me to.” I have a collection of glass that I find on the playground and I keep it in my desk. But teacher doesn’t know about it and we aren’t supposed to touch glass.” And a million other little things. Then they began to say the exact same thing every time they got out of the car when we got to school in the morning and they would not get out of the car until they said it just right. “By mom, I love you. Help me be good today and make it a good day and let me have fun.” I thought it was cute (and it absolutely was!) however I began to see the stress behind these words. Slowly, slowly the rigid structure of the words set in and the insistence that they were a “bad kid” most days at school began to break my heart. Now at 19 years old we FINALLY have an OCD diagnosis and our basically sh@tty insurance at least has connected us with NoCD. Traditional talk therapy has caused years of additional pain and re traumatization whereby the thoughts of being “bad” were dwelled upon and dwelled upon and dwelled upon. They are now just beginning to see the compounding negative effects of revisiting and believing the fears over and over and over. Confession is not the only compulsion they struggle with but I can say that neatness and cleanliness are never something that we have identified as a problem for them. Just wanted to share in case it helps others recognize forms of OCD.

When my psychiatrist tolde me I have OCD I told him "but it was not about Germs!!?!"