2022 PLV Scholarship Winner: Natalie Salvatierra on OCD, Anxiety & Striving to Make an Impact
Our second PLV Scholarship winner this year is Natalie Salvatierra, a recent graduate of Foothill High School in Tustin. My mother Patricia — in whose loving memory this scholarship program was founded — graduated from Foothill in 1970. There’s another parallel, too, connecting our paths: as individuals with lived experience of anxiety and obsessive-compulsive disorder (OCD), both Natalie and I have a keen interest not only in mental health, but in spreading hope and awareness to those who struggle. Having just returned from the International OCD Foundation’s (IOCDF’s) annual in-person conference in Denver, I was delighted to meet Natalie for coffee one sunny afternoon in mid-July.
IOCDF conferences are unique in that they are open to OCD sufferers, family members, clinicians, and researchers alike and provide an incredible sense of community for those connected to a very isolating condition. Moreover, many mental health professionals who specialize in OCD have OCD themselves and have gone full circle from patient to provider, living testaments to the efficacy of treatment. I myself hope to specialize in treating OCD as a therapist.
As a fellow human with an OCD brain, I knew that Natalie was someone who would “get it.” While anxiety in its various forms — whether it be social, generalized, panic, agoraphobia or another phobia — is very common and typically better understood by the general public, the true face of OCD is something of a mystery to most people and deserves further illumination.
OCD Is No Joke: A Crash Course on the Condition
OCD is unfortunately one of the most widely misunderstood mental health conditions thanks largely to its misrepresentation by the media and consequent use as a colloquialism. How often have you heard someone say they are “so OCD” because they are especially neat or well-organized, or perhaps they pay fastidious attention to detail or color-coordinate their closet? OCD is often confused with obsessive-compulsive personality disorder (OCPD), a condition in which individuals do not find any fault with their own rigid ideals of orderliness and perfection. People with OCD, by contrast, do not enjoy performing compulsions. Far from being a joke or personality quirk, OCD is a painful and debilitating neuropsychiatric disorder that affects about 1 in 40 adults and 1 in 100 children in the U.S. It tends to run in families and was once listed by the World Health Organization (WHO) as one of the top 10 most debilitating illnesses — mental and physical — by lost income and decreased quality of life. Its cause lies somewhere in the complex interplay between genetics, endocrinology (hormones), upbringing, trauma history, and triggering events (like life transitions or hormonal changes, such as in puberty or during the perinatal period).
People with OCD have brains with hyperactive amygdalae, or fear centers. Distressing thoughts and worries that others can dismiss as white noise become “sticky” in the OCD brain, generating extreme anxiety, disgust, guilt, and/or shame. These are obsessions. The OCD sufferer resorts to compulsions, or physical or mental strategies used to neutralize obsessions, which unfortunately make obsessive thoughts more likely to reappear via the behavioral principle of negative reinforcement. The individual falls into a vicious cycle, attempting to get rid of feelings that seem unbearable while unintentionally falling deeper into torturous mental spirals. While OCD fears may seem ridiculous and irrational to others — and even likely to the sufferer — the OCD brain experiences feared outcomes as though they were real threats, a fact that can be difficult for non-sufferers to grasp. To make matters worse, OCD often attacks a person’s values or preexisting insecurities, meaning that individuals can be haunted by what they fear most. People with OCD often suffer for years in silence, too ashamed to tell others about their experiences. Moreover, OCD is usually accompanied by co-occurring disorders, especially anxiety and mood disorders (like depression).
Cleaning, hand-washing, perfectionism, and checking stoves and door locks are the tiny slivers of OCD most frequently portrayed in the media. However, the reality is that literally anything can become an OCD obsession. Common themes include obsessive concerns about physical or emotional contamination, symmetry, perfectionism, sexual orientation or gender identity, health, and the “rightness” of relationships. Many OCD suffers experience obsessions in the form of unwanted taboo thoughts, such as intrusive sexual or violent thoughts (e.g. harm OCD, perinatal OCD, pedophilia OCD, religious/moral scrupulosity OCD, and more). People can also become obsessed with such things as sensorimotor preoccupations (e.g. whether they will always notice their blinking, swallowing, breathing, falling-asleep process, etc.), “magical thinking” (i.e. whether one could unintentionally cause a feared event to occur through some unrelated thought or action), the credibility of memories, existential worries, feelings of unreality, meaningless stimuli, obsessing about obsessing, doubting whether one really even has OCD, therapists, and therapy itself. The condition is, quite aptly, commonly referred to as “the doubting disease” and is partly characterized by “what if?” thoughts. OCD can sometimes have quite a “meta” flavor to it. Importantly, OCD sufferers do not want for their minds to be constantly occupied by such topics; OCD is ego-dystonic rather than ego-syntonic. It is precisely their resistance to such thoughts that gets them stuck in OCD loops. OCD is a disorder of cruel ironies.
While OCD obsessions are unseen thoughts, feelings, urges, or impulses, OCD compulsions can be either physically observable or mental. Physical compulsions include checking, cleaning, hand-washing, reordering/rearranging, researching, reassurance-seeking, body movements that feel “just right,” countless other rituals, and avoidance of feared stimuli. Mental compulsions, on the other hand, involve mental reassurance-seeking, rumination, reviewing memories, replaying events, counting, comparing, monitoring, praying, creating mental lists, purposefully thinking of an obsession to gauge one’s emotional reaction to it, evaluating one’s psychological responses to stimuli, and more. Compulsions are ultimately futile forms of analysis and problem-solving. Unlike with physically visible illnesses, people with OCD are sometimes very sick inside but still appear to lead functional and productive lives. OCD is a largely invisible illness.
The primary reason why misusing OCD as an adjective doesn’t sit well with OCD sufferers, clinicians, and mental health advocates is because it perpetuates ignorance surrounding this complex disorder, creating a formidable barrier between OCD sufferers and life-changing treatment. Most commonly, sufferers first seek help from primary care physicians. Unfortunately, about 50% of the time, general practitioners misdiagnose the condition, sometimes mistaking common OCD subtypes for other mental illnesses, including psychotic disorders, generalized anxiety disorder (GAD), and ADHD. This is thought to be largely due to the heterogeneity of OC symptoms. Psychiatrists, on the other hand, misdiagnose an estimated 30% of OCD sufferers, as I discovered at the IOCDF conference in Denver. They frequently prescribe medication, which does, at least, reduce symptoms in about 60% of cases.
Regrettably, though, psychiatrists often fail to recommend exposure and response prevention (ERP), the gold-standard treatment for OCD bolstered by decades of solid research (see Chris Trondsen’s article “Addressing the Barriers to Effective OCD Diagnosis and Treatment” to read more about the abovementioned facts and figures). ERP involves exposure to the feared stimulus while the individual refrains from performing compulsions. The magic of ERP is that it breaks the OCD cycle, freeing the individual from the spell of OCD. Acceptance and commitment therapy (ACT) is another evidence-based treatment for OCD seldom recommended by MDs that works on changing an individual’s relationship with distressing internal events like intrusive thoughts.
The majority of OCD sufferers see significant improvement with ERP and ACT, while medications like SSRIs (at higher doses than are typically used for depression) often provide people with further symptom relief and can make exposure therapy easier to tackle. Even though OCD is a chronic condition, freedom from OCD is obtainable in that individuals can learn the tools needed to cope with overwhelmingly distressing thoughts and feelings. Having OCD is rather like having a manual car: the sufferer must learn the tools to shift gears manually, unlike those born with “automatic” brains that naturally make these maneuvers from topic to topic.
Although powerful treatments and incredible podcasts and self-help books are now available in the 2020s, it is unfortunately the norm rather than the exception for sufferers to share personal stories of years, or even decades, spent in talk therapy with mental health providers who were ineffective in treating OCD. Some even report stories of “co-compulsing” with therapists about obsessive worries in treatment, fueling the OC cycle. Many recall playing games like Uno or Candy Land in play therapy as children with well-meaning clinicians who somehow missed the mark. It takes an average of 14-17 years for people to receive OCD-specific treatment after the onset of symptoms. The suicide rate is high, with many not even realizing that what they are suffering from is OCD, a treatable condition. Graduate programs provide sparse information about the condition to future mental health professionals, and most providers are not equipped to effectively treat obsessive-compulsive and related disorders (OCRDs), which is why it is vital to find a qualified specialist (such as through the IOCDF website). It is thought that less than 10% of people with OCD receive evidence-based psychotherapy like ERP, representing a major failing of the mental health community to serve this population. Over ninety percent of this community is out there struggling.
Meet Natalie
Now back to Natalie’s story. Natalie was lucky enough to receive treatment for her OCD and anxiety as a teen. Early intervention can be miraculous in the lives of people with OCD, sparing them from many years of unnecessary suffering.
At the start of the pandemic, Natalie’s own experience of the disorder caused her to reflect on how many of those within the OCD population — most obviously those with contamination fears — had a harder time coping with the threat of COVID-19. In April of 2020, she made an Instagram post calling for people to write letters of encouragement to those receiving OCD treatment at inpatient programs. Natalie was pleased by the letters that poured in.
This inspired her to found Solely Sunshine in May of 2020, an organization that allows people to send letters of support to individuals in inpatient treatment overcoming a variety of mental health conditions. Contributors compose letters on her website, and Natalie’s team of over 100 teen volunteers transcribe the letters by hand. Natalie’s team has sent approximately 20,000 letters written by people in about 60 countries to over 150 mental health facilities primarily in the U.S. (click here to write you own). Meanwhile, she has continued to use her Instagram as an advocacy platform. Her video containing the phrase “OCD is not an adjective” received nearly 50,000 views. She has spoken as a mental health advocate on live national television and on more than 10 podcasts.
But Natalie’s contributions to the mental health community don’t end there. At the age of 16, she wrote and published a picture book to help young children struggling with anxiety. Her book Do Not Worry, Little Donkey (2020) is about a young colt who faces many common childhood fears, including storms, monsters, ghosts, and the dark. In a heartwarming tale, his mother helps him to overcome his worries by sharing her perspectives. Natalie’s book can be purchased here on the Barnes & Noble website.
On top of these accomplishments, Natalie is a member of the National Honor Society, recipient of the Girl Scout Gold Award, Polynesian dance artist, and has been active in several other academic organizations and community service projects throughout her time at Foothill. As if her high school days were not busy enough, she also worked as a babysitter, caretaker for an elderly woman, and provider of gardening/lawn maintenance services.
What is Natalie’s dream? She will be starting university at Cal Poly San Luis Obispo’s Honors College this fall as a Food Science major. She hopes to one day craft a tasty and nutritious beverage for those undergoing chemotherapy who have experienced an altered sense of taste. For more information straight from Natalie, check out her written interview below:
Natalie In Her Own Words
What advice would you give to aspiring authors who are interested in writing children’s literature?
Natalie: If you are an aspiring author who wants to write children’s literature, I highly encourage you to find a notebook or open up an online document and just start writing! When writing, make sure that you are telling a story you are passionate about, rather than trying to write about what you think other people want to hear. If you are passionate about what you are writing, that energy will be reflected in your writing and make people excited to read it.
What inspired you to found Solely Sunshine, and what practical steps did you have to take to transform your idea into a reality?
Natalie: In April 2020, I learned that people with mental health conditions were struggling significantly more during the pandemic due to feelings of isolation, hand-washing compulsions, and high anxiety. Empathizing, I wanted to spread encouragement (or what I call sunshine) to people struggling with mental health conditions. I asked my friends to write letters of encouragement that I would mail to mental health facilities to inspire the patients. The response was fantastic, so I decided that I wanted to make a website so that anyone, anywhere could make a difference virtually and for free by writing an online letter that I would transcribe to paper and mail to mental health facilities. I created the website, and from that moment “Solely Sunshine” was born.
What do you wish the public knew about OCD?
Natalie: Primarily, I wish that people knew OCD is not only about putting things in rainbow order or even extreme organization. It is so much more than that. Some people with OCD do not even experience those symptoms. There are so many other forms of OCD, including intrusive thoughts, checking things repeatedly, hoarding, rituals, and cleanliness. OCD is when people become obsessed and unable to change their habits or thoughts out of concern something may happen. It can be very debilitating, overwhelming, and frustrating, which is why it can be insulting when people say, “I’m so OCD” when they do not understand the diagnosis. It is a real mental health condition that people struggle with.
What would you tell an OCD sufferer who feels hopeless but is considering seeking specialized treatment for the disorder?
Natalie: If you have OCD or think that you might, seeking treatment is a good way to learn tools and techniques to make yourself less worried or anxious. Asking for help is never something to be ashamed of; so many people love you and want to help you feel your best.
What three things does the world need more of?
Natalie: I believe the world needs more love, kindness, and tolerance. If people were kind to one another, there would be fewer arguments. If people showed more love, people would feel less alone. And if people had more tolerance, the world would be much more peaceful.
Resources
Recommended Books (Nonfiction)
Brain Lock: Free Yourself from Obsessive-Compulsive Behavior, Twentieth Anniversary Edition, by Jeffrey M. Schwartz (2016)
Freedom from Obsessive-Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty by Jonathan Grayson (2014)
Needing to Know for Sure: A CBT-Based Guide to Overcoming Compulsive Checking and Reassurance Seeking by Martin N. Seif & Sally M. Winston (2019)
The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad Thoughts by Lee Baer (2002)
The Mindfulness Workbook for OCD: A Guide to Overcoming Obsessions and Compulsions Using Mindfulness and Cognitive Behavioral Therapy by Jon Hershfield & Tom Corboy (2020)
The Self-Compassion Workbook for OCD: Lean into Your Fear, Manage Difficult Emotions, and Focus On Recovery by Kimberley Quinlan (2021)
This is only a selection of titles, but there are many more great books on OCD currently available, including books on specific OCD themes (e.g. harm, relationship, etc.).
Recommended Books for Children & Teens (Nonfiction)
Standing Up to OCD Workbook For Kids: 40 Activities to Help Children Stop Unwanted Thoughts, Control Compulsive Behaviors, and Overcome Anxiety by Tyson Reuter (2019)
Stuff That’s Loud: A Teen’s Guide to Unspiraling When OCD Gets Noisy by Ben Sedley & Lisa Coyne
Talking Back to OCD: The Program That Helps Kids and Teens Say “No Way” — and Parents Say “Way to Go” by John S. March & Christine M. Benton (2006)
The OCD Workbook for Teens: Mindfulness and CBT Skills to Help You Overcome Unwanted Thoughts and Compulsions by Jon Hershfield (2021)
Recommended Books (Fiction)
Because We Are Bad: OCD and a Girl Lost in Thought by Lily Bailey (2018)
Turtles All the Way Down by John Green (2019)
When I See Blue by Lily Bailey (2022)
Podcasts
Purely OCD by Lauren Rosen & Kelley Franke (2020-present)
The OCD Stories by Stuart Ralph (2015-present)
Your Anxiety Toolkit by Kimberley Quinlan (2016-present)
Websites
OCD Center of Los Angeles (OCDLA)
The International OCD Foundation (IOCDF) *This website is packed with useful information and can help you locate an OCD specialist.
Instagram Accounts
Resources for Family Members & Loved Ones
AT Parenting Survival Podcast by Natasha Daniels (2017-present)
Family Support Group, a free, monthly virtual support group offered by The Gateway Institute that has been running for 10 years; moderated by Chris Trondsen, Liz Trondsen, and Tiffany Vicencio
Loving Someone with OCD: Help for You and Your Family by Karen J. Landsman, Kathleen M. Rupertus & Cherry Pedrick (2005)
The Family Guide to Getting Over OCD: Reclaim Your Life and Help Your Loved One by Jonathan S. Abramowitz (2021)
When a Family Member Has OCD: Mindfulness and Cognitive Behavioral Skills to Help Families Affected by Obsessive-Compulsive Disorder by Jon Hershfield (2015)
