I knew when we were in workshop together at Vermont College of Fine Arts that Rachel was a wonderful writer. But after reading Don’t Touch, I also think she’s an important writer. There are not many books that are so honest about mental illness and so empathetic towards teens who are struggling. We need many more narratives like this. I was delighted that she agreed to sit down and answer a few of my questions about her own experiences, about writing about mental illness, and about kids who are struggling. Thanks for tuning in to join us!
Would you be willing to share a little more about your own experiences with anxiety and OCD?
Sure. Around age ten, I started experiencing OCD symptoms, mostly magical thinking and handwashing. Magical thinking is akin to a very strong superstition—believing that something you do or fail to do might have consequences. In one of the first episodes I remember, I was watching TV and saw a disturbing commercial—there were several that really bothered me, one about AIDS and one about the destruction of the environment—and I had the thought of making a bet that I could keep my eyes closed for three minutes straight or else something horrible would happen. I closed my eyes, and then realized I had no way to time myself, so I sat there with my eyes closed through a whole TV show to make sure it had been a full three minutes. The tricky thing about OCD is that you know these rules don’t make logical sense, but there’s enough doubt that the idea of breaking them is terrifying. It isn’t worth the risk.
The handwashing attracted attention because it made my skin raw. I saw a psychologist for a while, but I didn’t like talking to her, and I was really good at pretending nothing was wrong, so I shifted to compulsions that were easier to hide. The people around me were caring and perceptive, but I kept my OCD hidden for about four more years. Eventually, I was under so much stress and so upset all the time that it became clear I needed help. I visited a psychiatrist and started taking medicine. Throughout high school, I continued to be anxious and shy, kind of coming to terms with what all this meant. The experience raised a lot of questions for me about the brain and personality and how much we’re in control of ourselves.
What was it like for you to write this book? Every book is challenging, obviously, but was it a triggering experience for you, or was it freeing? (Or anything else . . .)
I wouldn’t say it was triggering. I experienced some anxiety while writing tense scenes, but in an excited writerly way – like, ooh, I’m feeling this. When I first started writing about a girl with OCD, I did feel like I was doing something a little taboo and daring. I felt very close to the text and to Caddie, and that’s probably part of why I abandoned it for a number of years. I think I needed more distance from my own experience to be able to write fiction inspired by it. By the time I was writing the version that currently exists, I had a good bit of distance, both from that experience and from Caddie as a character.
What is the difference and relationship between Obsessive Compulsive Disorder and Anxiety Disorder?
OCD is one of many types of anxiety disorders, which include panic disorder, social anxiety, phobias, PTSD, and generalized anxiety disorder. When people talk about “anxiety disorder,” they may be referring to generalized anxiety disorder, which involves ongoing and exaggerated worry and stress but not the compulsions associated with OCD. It’s common for people who experience one type of anxiety disorder to experience another, and it’s also common for anxiety disorders to co-occur with depression or other mood disorders. Whatever combination of biology, genetics, and life stress makes a person vulnerable to one of these disorders often seems to include a vulnerability to a spectrum of symptoms.
In Don’t Touch, Caddie’s OCD becomes much worse when her father leaves, but it’s suggested that her struggles go beyond that, that perhaps there is even a genetic component. What is the relationship between anxiety and stress? Is OCD always brought on by stress?
Well, as a caveat, I’m no expert, and even among experts, the exact causes of most mental health problems still aren’t clear. With OCD, though, we do know that it’s related to an imbalance of serotonin in the brain, and also to heightened activity in some parts of the brain. There’s strong evidence that OCD is at least in part genetic—people with OCD are four times more likely than the average person to have a close relative with OCD. Studies have identified some potential genetic markers for OCD and even a causal relationship between strep throat and some types of OCD.
It’s also pretty clear that stress alone doesn’t cause OCD—a lot of our storytelling tropes around mental illness suggest that there’s always some single, triggering event that brings it on, but that’s rarely the case. That’s why I wanted to make it clear that Caddie’s father leaving wasn’t the start of her illness. It is true that stress makes these disorders much worse—someone with a vulnerability to anxiety may not have major problems until an extreme life event creates so much stress that regular coping mechanisms no longer suffice. Other times, the symptoms appear with no triggering event, seemingly out of nowhere. That’s how my own symptoms were, and it’s very frustrating to have people seek out some underlying cause for (or completely dismiss) a disorder that’s largely biological.
Several of Caddie’s friends realize what is going on with her by the end of the book, and they are very supportive of her. How easy is it to tell that someone has OCD? Do people usually notice?
That probably depends on the symptoms. Very young children are less likely to hide their symptoms, so it’s often easier to see it in them, and when OCD is very severe, sufferers of any age are less able to resist or delay acting on compulsions that draw attention to the problem. But secrecy does seem to go hand in hand with OCD, and it’s probably under-diagnosed because of that. People with OCD are often very good at hiding their symptoms, and even when the symptoms are noticed, they may be misinterpreted. For example, when I washed my hands raw, my parents and doctors thought I might have an allergy, and when I repeatedly asked to go to the bathroom to wash my hands, my fourth grade teacher thought I might have diabetes. When circumstances made acting on compulsions very difficult—like when I was at summer camp—I was able to set them aside for a time. Of course, the pressure to keep the problem secret creates its own stress and is incredibly isolating. Once a sufferer gets past the shame and secrecy associated with the disorder, it’s much easier to approach treatment.
What signs can we look for in the children and teens we work with to tell that they are struggling with anxiety or OCD?
For OCD, some signs are repetitive behaviors like tapping or flicking a light switch, a need to have objects or rituals just so, dry or raw hands, an obsessive approach to cleanliness or exercise or religion, repeated questions as if double-checking to make sure the answer was heard correctly or rereading passages to make sure no word was skipped. One tricky sign is an exactness of speech—repeating or clarifying something that’s just been said or apologizing for a statement that was inexact or metaphorical. Many compulsions (and worries in general) happen in thought—repeated praying or counting or mantras—and from the outside, this might look like spaciness, poor attention, or aloof contemplation.
For kids with OCD or anxiety, tension is a major symptom, and this might show up in the form of headaches, jaw pain, stomachaches, difficulty sleeping, or nightmares. Worries and fears that are blown out of proportion and that don’t pass with time are another sign. A kid who won’t talk about their compulsive rituals might still be willing to talk about the obsessive thoughts he or she finds disturbing.
On a positive note, it seems that creativity and intelligence are often associated with anxiety and mood disorders. They don’t always go together, but if a gifted child seems to be under unusual stress or troubled excessively by fear and worry, it’s worth delving deeper.
How can we support them once we do realize it?
It’s important to let them know that you support them and that you’re open to talking about anything. At the same time, I think it’s important not to get maudlin or pitying or to treat them like a victim. You might feel very bad for a kid who’s suffering, and expressing empathy is great, but no one likes to hear, “I feel so bad for you,” or, “this must be so hard for you,” or, “I can’t imagine how awful it must be to be you,” over and over. OCD and anxiety are both treatable and common—certainly not the end of the world—so while it’s important to take them and the suffering they cause seriously, I also think it’s important to normalize that experience, to share what’s known about the biology of the disorders, and to keep a sense of humor.
Do you have any suggested resources?
As a kid, I benefitted a lot from reading Judith L. Rapaport’s The Boy Who Couldn’t Stop Washing. It includes really interesting accounts from a variety of OCD patients, but it was first published in 1989, so the science around OCD has developed a lot since then.
Parentbooks also has a pretty great booklist geared toward a range of age groups, some of which delve more specifically into a particular type of OCD: http://www.parentbooks.ca/Obsessive-Compulsive_Disorder.html
The internet was not a thing when I was in high school, but there are tons of websites for kids with OCD, and online support can be really helpful.
And just for fun: the book trailer for Don’t Touch just came out and it’s great.