How My Daughter Changed the Way I Thought About OCD

My daughter is 16. Since she was very small, she has displayed signs of obsessive compulsive disorder (OCD). I didn’t know enough about OCD to recognize the symptoms when she was little, so she wasn’t diagnosed until she was 12, when the stress of middle school hit and her symptoms went into overdrive.

I’m a single mom, it’s just been the two of us since she was 6 months old. Once I finally understood what was going on, I felt like a garbage parent for not recognizing the signs and getting her help sooner.

We started family therapy and it was just as important for me as it was for her. Up until her OCD diagnosis and starting therapy, she would say things to people and do things I didn’t understand, and I’m incredibly ashamed to say they would make me angry as a parent. She would offend people, including friends and family, coming across as rude. I would become agitated and try to make her understand why her actions were making people uncomfortable and she’d get even more stressed and upset. We argued constantly.

Understanding her thought process opened my eyes to an entirely different kid. She was fighting so hard every, single day to function. She had panic attacks multiple times a day. She sat at a table alone at lunch so her food wasn’t contaminated. It wasn’t because she wasn’t being social; she wished she could eat with friends, but couldn’t bring herself to do it. She experienced headaches due to her environment bombarding her with stimuli all day that was “wrong,” but she didn’t have control to fix.

So many people don’t understand OCD and that people battling it don’t mean to offend those around them. She experiences the world differently than you and I do.

Our family and friends understand what’s happening now too, and they’re very supportive of her. We’re so fortunate.

You may be wondering, “What does OCD look like?”

OCD manifests in many different ways. I can’t tell you what other people’s experiences with OCD look like, but I can tell you what hers used to look like before she started therapy. These notes turned into mantras for me when I was first trying to adjust my mindset and better navigate the world she lived in. Once we were on the same page, we were able to calmly discuss things that came up and address them together. We went from fighting non-stop to having an incredibly strong, close relationship.

The following were notes I wrote down to remind myself of things that were extra difficult for her when we started therapy. Once we identified and understood them, we were able to navigate them together.

• She will immediately pull out hand sanitizer if she shakes your hand. She doesn’t think that you specifically are dirty. She feels germs on her hands.
• When she asks you what time it is, she doesn’t want a rounded number. She wants to know the time down to the minute. If you don’t give her the exact time, she’ll keep asking until you tell her, and will become visibly upset if you don’t clarify.
• If you interrupt her in the middle of an activity, she will not fully register what you were saying. Her mind is completely focused on the task at hand and breaking away from it takes time.
• She will repeat things several times if her mind gets stuck on an obsessive thought. It will stop eventually.
• She has a tic. Sometimes it manifests as her clearing her throat over and over. When she was tiny, it was smelling every, single thing she put in her hand. Now, it’s blinking over and over again. She can’t control her tic. Pointing it out makes her self-conscious, amplifies her discomfort and makes it even more severe. It can get so intense it gives her headaches. Giving her the side-eye or bringing it up will not help.
• She has trouble with numbers. If the radio lands on a volume of seven, 11 or any other prime number, she will adjust it. She’s not trying to be controlling, she just won’t be able to pull her attention away from the dial long enough to interact with you if she doesn’t adjust it. (For years I didn’t understand why she kept changing the volume and I got really frustrated by it. When I finally asked her why she was doing it she looked at me with surprise and said, “It was on a prime number.” She assumed it bothered me as much as it bothered her.)
• She struggles to finish classwork, tests and quizzes on time due to erasing and rewriting words over and over until there are holes in the paper because she thinks the letters don’t look right, even though she knows all the material.
• She won’t touch doorknobs. She’ll use her shirt to open them.
• When she was little, she used to wash her hands until they bled. I thought she was washing them and going outside without drying them fully and we were trying to correct that behavior at home. Then I got a call from the school saying that she was late for each class because she was stopping to wash her hands after every class period. (Her therapist has helped with this significantly, giving her tools to use when the urge gets too intense.)
• She will straighten picture frames. If they are crooked, she won’t be able to converse with you until she straightens them. She’s not trying to make you feel disorganized. She just can’t focus on you until the issue with the environment is resolved.
• If you interrupt her, she will point it out and complete her thought before letting you speak. She’s not trying to be rude, she feels like she has to complete what she starts.
• She will not drink from a cup at your house if she notices you don’t have a dishwasher. She doesn’t think you’re terrible at washing dishes, she just can’t do it. We usually just take bottled water with us when we visit friends and family.
• She has to get ready in the same order every day. This includes clothing order. Interrupting this routine will cause extreme distress.
• Once she has a consistent routine, she has to have ample time in advance to prepare herself for an alteration to it. If she doesn’t, even if it’s something small, it will set her off. It will look like a huge response to a tiny thing, but that tiny thing is on top of the other 30 incredibly stressful things she’s trying to deal with because of her OCD — it will be like the straw the broke the camel’s back. (It took me a long time to get used to this. I’m the polar opposite. I make plans on the fly and go with the flow. Unlike me, having an order to things helps keep her stress levels under control.)

Now that she’s in therapy and is being treated properly, she’s able to much better navigate her world. She’s been taught coping mechanisms and given tools to use. There are no more bleeding hands from handwashing. She can sit at a table with friends and eat. Her quality of life has improved significantly. She still fights OCD all day every day, and most days she wins. When she’s experiencing something extra stressful in life, the symptoms come back in a tidal wave. We take each day one at a time.

She explained that up until we started therapy, she assumed everyone around her experienced the world the same way she did, and that she was just too weak to deal with all of the incredibly stressful, overwhelming stimuli we’re surrounded by every day. She didn’t understand other people experience the world completely differently. It broke my heart.

If you have a friend or family member with OCD, please know they are not trying to offend you or be disrespectful, rude or ungrateful. They’re doing the best they can.

My kiddo is doing her best, and I’m doing my best to support her. If you see a parent having a calming conversation with a child who looks visibly upset about something that seems minor, don’t immediately assume the child is a brat. They may be fighting a war to get through the day that you just can’t see.

In summary, I had no idea what OCD was until we started family therapy. I used to joke about it with friends who were super organized or who had clean houses. OCD isn’t a preference for neatness and organization. It’s a never-ending battle to survive overwhelmingly stressful stimuli in the world around us.

For those who are navigating OCD, my thoughts and heart are with you. It’s a beast, and takes so much strength to get through. I see you, and I’m amazed by you.

This article was originally published on Medium.