When you hear the acronym OCD, what do you think of? Someone who needs to put their silverware in order each time? Someone who must wash their hands 20 to 30 times per day? Or perhaps someone that needs to say someone’s name 10 times before actually being able to talk to them?
Yes, those are all potential characteristics of someone who is diagnosed with Obsessive-Compulsive Disorder, but it doesn’t stop or even start there. For many people – especially children and teenagers – having OCD means having additional co-morbid neurological disorders, such as Tourette Syndrome, anxiety, depression, ADHD, Asperger’s Syndrome and even autism.
To better understand what children and teenagers with OCD and their parents are going through and how their co-morbid disorders fit into the picture, I’m going to provide a couple of examples that have come through the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) in the past year.
First, here are what some parents have to say about their children and teenagers with OCD and associated disorders:
- On coping with stigma and bullying: “As the parent of a child who is different – my 14-year-old son has Tourette Syndrome and OCD — I worry constantly that he will be ridiculed and ostracized because of his peculiarities. And with (him) starting high school in the fall, that worry is even bigger.” – Michelle M.
- On eating out at a restaurant: “On the occasions that her OCD isn’t bothered greatly by the restaurant, we have to next deal with the ADHD. That means (she) cannot sit on her chair, she needs to fidget on her chair, stand up, bounce, go to the bathroom several times, she cannot wait to be seated, cannot wait to be served, cannot wait for her drink refill to arrive, cannot wait to leave when she’s done.” – Missy B.
- On dealing with school: “At age 7, my daughter was diagnosed with OCD. The OCD has become increasingly more of an issue than the tics from the Tourette (Syndrome she also has). Despite being an A-plus student, my daughter struggles with intrusive thoughts and had much difficulty adjusting to middle school this year.” – Dee C.
Now, here is what a few teenagers have deduced from first-hand experience living with OCD and associated disorders:
- On being accepted by family, from 19-year-old Katie D.: “Being diagnosed a little over a year ago with OCD has been a struggle. Mainly because with my parents being so accepting with my Tourette, it was a hard change when they didn’t accept my OCD. They didn’t even believe I had it!”
- On OCD inducing anxiety and panic attacks, from 17-year-old Jordan C.:“My OCD often controls my life, and I feel like a prisoner in my own body. Contrary to popular belief, OCD is not just ‘clean freaks.’ Below are the things that set me off into panic attacks (ones with a * are extremely bad):
- Finger licking*
- Nail biting*
- Nail picking
- Showers that aren’t white
- I’ve NEVER washed my hands without lotion*
- Other people’s driving
- My hair not being perfect
- People pulling at ears/belly button
- Textures of certain foods*
- Being alone
- The smell of other peoples car/home
- Being told I’m wrong
- Chewing on ice*
- Not having a Butterfinger
- Air blowing on me*
- And lastly, what OCD looks like through the eyes of a 9-year-old, Jaden E.: “I have to have certain things or know certain things. I must have cereal in MY cereal bowl; if not, I feel I’m not having actual cereal. It feels unnatural to me. Whenever I go somewhere, I must know where I’m going, why I’m going and how long will I be there. I must have the TV on at night, if not I get freaked out.”
Things look a little different when observed through the lens of someone else, don’t they? It’s much easier to gain perspective of a neurological disorder such as OCD with the help of first-person stories.
There are many more of these stories on the Teens4TS and TSParentsOnline blogs. One click on “OCD” in the tag cloud will reveal not only a host of personal experiences with OCD, but a number of research articles as well. Good information on dealing with OCD – and, more importantly, properly dealing with those who have the condition – is out there. You just have to know where to look. Then, once you find the information, you just have to be prepared to have an open mind – for whatever you might discover.
After all, individuals with OCD are people, you know – people just like you and me. Learning about the condition they are forced to carry with them everywhere is paramount in the quest to treat them as such. Why not start today?
This guest post is written by Jeff Weber, the blog administrator for the Teens4TS and TSParentsOnline blogs. These blogs are for individuals and families with Tourette Syndrome and associated disorders such as OCD, and have been rapidly gaining popularity since their inception in November 2011.