I find it impossible to sit down at night and relax with Transformers and Avengers littering my peripheral vision. There is no going to sleep with dishes in the sink. I can almost feel the thick orange Doritos crumbs in each crevice of the couch, like I’m the princess and they are endless peas. I jokingly refer to these annoying traits as “my OCD” on occasion, but while my penchant for a clean house DOES get in the way of other things I enjoy, I don’t actually have Obsessive Compulsive Disorder.
My nine year old son does.
Pea (an affectionate nickname turned pseudonym) was diagnosed with an anxiety disorder just before his third birthday. I’ve spent so many hours with doctors, psychologists, and therapists that I’m pretty sure I deserve an honorary degree. Despite considering myself a somewhat reluctant expert on behavioral disorders, it turns out that I was totally wrong about OCD. You probably are, too. After having the diagnosis added during evaluations last spring, I went through a crash course in understanding. Prevalent OCD cliches caused us to overlook something that was more serious and harder to control than anything we had faced before.
Knowledge is everything, y’all. I share the reality about living with these disorders in an effort to raise awareness, get rid of the stigma, and replace it with the truth. Obsessive Compulsive Disorder turned out to be much different than my perception, so here are a few symptoms of my son’s illness and the way it manifests for him. You might be surprised!
It’s Not Just About Germs
Pea doesn’t wash his hands all the time. In fact, he probably never would if I didn’t remind him! He is just fine being covered in dirt and muck. He’s not all tied up in knots over the germ thing. When I picture OCD, I imagine the person standing for hours at the sink, washing their hands until the skin is raw. . . and then washing some more. The constant fear of being soiled or contaminated is a real obsessive symptom of OCD, but it’s not the only route the disorder takes. OCD wears many hats, and that’s just one.
Compulsions Are More Than Counting
When you think about a person with OCD, you likely think of someone locking the door five times in a row or constantly rechecking them. I never entertained that Pea had OCD because he didn’t walk around all day completing classic rituals like hand washing and counting. While rituals (compulsions) are a hallmark of OCD, they take many forms and don’t always draw attention.
Pea has always had a handful of “quirks” that we brushed under the rug. Treating mental health is often about picking battles. You focus on the issue causing the most disruption to daily life and worry about the other stuff “later.”
Pea’s little oddities actually turned out to be his rituals. When faced with more anxiety than he could process, Pea developed compulsions in an effort to self soothe and ward off the chaos in his brain. In his case, it’s making badges. He likes to play “real life” role playing games — like police officer, FBI agent, or teacher. This is another ritual; he plays games to step outside of his fears and be a strong adult. In order to play, he must make very realistic badges for the chosen profession.
At first, it was cute. He got very good at it, and we were impressed with his graphic design abilities and how accurate they were. But as months turned into a year, and beyond, interest turned into obsession. His self imposed rules kept getting harder to follow. Soon he couldn’t play, or even function, without a badge, and it had to be perfect. The compulsion to make and wear a badge at all times is now glaringly obvious. If I had understood more about compulsions and rituals, I might have seen the quirks as red flags much earlier.
Obsessions Can Simply Be Thoughts
I used to assume the “O” in OCD was for obsession with an activity, item, or collection. Though it makes perfect sense once pointed out, I had never entertained that obsessive thoughts went into that category. This was the piece of the puzzle that was the hardest to identify. Pea didn’t share the extent of what was going on inside his head until it was out of control.
All day long, Pea’s brain tells him horrible things. He obsesses about being a bad person, a horrible student, a terrible friend. His head brims with tiny facts and memories that he considers proof of his failings. He spends his life running on a hamster wheel, chasing the dangling prize of perfection, which is always just out of his reach. Nothing he can do is ever good enough to meet the standard of perfection his brain seeks. Imagine a vengeful bully handcuffed to you around the clock. You are expected to function normally like everyone else around you — all while he spews venom and hate into your ear. He does this all day long and then crawls into your bed at night to join your dreams. That is what it’s like to live with obsessive thoughts.
Everyone needs to know that kids like mine are just like yours in so many ways. Pea doesn’t look different. He will return your smile. He will laugh with his friends. A good day means that he’s strong enough to carry on in spite of the turmoil inside, and his hard won coping skills can hide it. A bad day means that he can’t look at the word “happy” on his own birthday tablecloth.
I’ve been fortunate to counsel many parents just starting to question if certain behaviors are “normal” in their kiddos. My first and most important piece of advice is also the simplest. If you are worried, unsure, or even the slightest bit concerned about your child, do not hesitate to consult a professional. Pediatric psychiatrists, psychologists, and counselors are amazing people who can and will help. The earlier these disorders are diagnosed and treated, the better the chances that your child can overcome, cope, and carry on with a normal life. There is no downside to an evaluation. If it turns out that no intervention measures are needed, you can rest easy and put those worries aside. If the opposite is true, and therapy and/or medicine will change the possible trajectory of his life, you have gained everything. Don’t be afraid to ask for help!
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Thank you for sharing this. All my life, as far back as I can remember, I have had those obsessive thoughts, including impulsive and irrational or harmful thoughts. I knew it couldn’t be normal or right, but didn’t want to be labeled any more delinquent as a kid than I already was. It was really frightening. Most of the time, I was able to self talk myself through it, knowing those thoughts were not right. Anti-depressants off and on as a teen and adult did nothing. Several years ago my thyroid tested normal but I had nearly every symptom of hypothyroidism. My endocrinologist decided to try treating me anyway. With a couple weeks, those thoughts were GONE. First time in my life. Normal TSH range is 1-5. If mine gets up past 1.5 I start to develop symptoms again, including those thoughts. I know when it’s creeping up. We have to keep my TSH right at 1. Weird, huh? Honestly, I’m glad to have relief from that nightmare.
That’s SO interesting, Kymberlie! I’ve never heard anything about thyroid issues being connected to obsessive thoughts before and I’m always excited to have new things to look into! Leave no stone unturned, I say! I hate that you went through such pain as a child – I’ve made fighting against those labels and stigmas my personal mission in life! Thanks for sharing with me!!
Oh yes, thyroid issues are huge triggers and often play a role in anxiety and depressive disorders. In fact, there is some literature to support a bolstering of thyroid function in connection with other medications to help treat certain types of cases of bipolar disorder.
Thank you for what you are doing to help others understand what OCD truly is. My 9-year old son was diagnosed with OCD two years ago, and I now realize that I knew virtually nothing about what OCD was before that. And now I realize how little most people understand about it. I appreciate what you are doing…everyone who learns a bit more will make the world a better, more understanding place, for your son and mine.
Oh, THANK YOU, Sarah!!! It means so much to me to hear from my fellow mamas!!! I’m bound and determined to bring these struggles to the light of day in an effort to get rid of the stigmas and misconceptions! It bouys my strength to hear that it might be doing some good! I’m fighting with you, friend!!!
Thank you for sharing. My son, now 17, was diagnosed with OCD at age 7. I’m a child psychologist, but didn’t realize that when he told me he had bad thoughts in his head and wanted help to “make them go away” that he was talking about obsessions. It wasn’t until he started having stereotypical germ fears and washing rituals that I got clued in. Now I see it as my mission to share with other parents what OCD really is. You just did a beautiful job of doing that, and I thank you!
This makes my heart happy, Angie!!! That is a HUGE compliment coming from a pro!! ? If I can make things easier for at least one child and their parents, I’ll be a happy camper! Behavioral Health is so misunderstood and I pray that one day there won’t be so many stigmas and false truths associated with these disorders. Thank you SO MUCH for taking the time to comment!! It made my day!
We adopted a little girl out of the foster care system a few years back. We got her when she was 7 months old and she is now 3. We have searched and searched and searched for mental and behavioral help for her. I believe like you said , that catching it and treating earlier is better but I cannot find anyone that will see her because of her age. She tends to have ODD behaviors as well as ADD/ADHD. I have called so many offices in tears and they have told me they cannot see her for 1-2 more years and they offer no advice as to what to do in the mean time. It has been THE most frustrating part of our foster/adoption journey. I feel like I am failing her because I do not know how to help her or how to respond to her behaviors. 🙁
Cortney, I am SO GLAD that you posted this comment because that’s a WHOLE BUNCH OF CRAZY! Three is most certainly NOT too young to get help! I’m going to send you a message shortly!
Thank you so much for chairing! I live in Sweden with my family. We also have a son with OCD and we had to struggle until he was 15 years old before he got his diagnosis! Like so many people out there we had never heard about OCD before that day.
When the doctor told us that it was genetic, I started to think that it had to come from my side of the family. I contacted a specialist in psychiatry and at the age of 44 I got my OCD diagnosis! From that day I started to read everything about OCD that I could lay hand on. I also realised the sad fact that there are to many people in our society that are ignorant about OCD.
I now fight to eliminate stigmas and false truths associated with this disorder in my home town in Sweden. ??