By Sebastian Jaramillo
Boston University Statehouse Program
For seven years, I hid my mental illness from my family. The monster inside my head fed on this isolation. It fed on my ignorance of mental health. It was only a year and a half after I told my parents about my disease that I found out the monster in my head had a three-letter name — OCD, or obsessive-compulsive disorder.
The reason why OCD is so difficult to get across to someone who doesn’t have it is because of how deeply enmeshed it is in the sufferer’s brain. OCD is almost like another color, only visible to one person. If that person tries to explain what that color looks like to someone who hasn’t seen it, neither of them will have an easy time.
For most of my life, OCD did not have a name or a definition. OCD was pain and suffering and isolation and guilt. It was a struggle no person should live through alone. And yet they do. By the thousands. All over the country — all over the world.
COVID-19 and its focus on mental health have helped shine more of a light on it. And the growth of telehealth may help offer better treatment options.
Diana Katsikaris developed OCD when she was 11 through PANDAS or Pediatric Autoimmune Neurological Disorder. And her biggest fear? A global pandemic.
It started with swine flu and developed strep throat, which ushered in all the anxiety and OCD she has dealt with for the last 14 years. Even after her diagnosis, it took her almost seven years to find a therapist she clicked with.
“I was in the heart of my teenage years. I did not want to be different. I refused to want to do anything to help myself,” she said.
It was only when she felt that her therapist “saw [her] as a person,” that her healing began.
Katsikaris is now a 4th-grade teacher in Boston and manages btone FITNESS in Wellesley. She used to see her OCD as something that would hold her back. Now, she realizes it has taught her valuable lessons about human communication and empathy.
“If somebody said, ‘would you go back and change it?’ I would say no,”’ she said.
While OCD really challenged her brain and some days it felt “so brutal and loud and challenging to cope or see anything without a feeling of panic” she now knows her OCD is a strength.
Ironically, her biggest fear was that a global pandemic would happen. Many therapists assured her that would never be the case. When the COVID-19 pandemic happened, she decided it was the perfect time to share her OCD journey with the world.
Although she loved it when her parents handed her a book about OCD, these books were always written from an academic perspective.
“I always wanted to pick up a book and read about someone’s personal experience,” she said. “When my biggest fear was actually happening, I was like, ‘you know what,’ I’m going to use this time to write about my story.”’
Hannah Oakley, who founded the Boston-based Moms with OCD support group, described her OCD as feeling like she constantly had “a person with me 24/7 constantly gaslighting me. Like, ‘Are you sure you locked the door? Are you sure you turned off the stove? Are you sure you just said the right thing to your son and that you’re not psychologically harming him for the rest of his life?’”
Oakley avoided sending her son to daycare for many years because of OCD-related fears. She was also hesitant to be completely honest with providers for fear they might find her unfit to be a mother.
“You speak this out loud, some of your fears, and someone takes away your children. They think you’re not fit to be a mother. They put you in jail,” she said. “These things happen. And they’re rare, but it is a problem with how we understand mental health as a country, and just the expectations we put on mothers to handle their own s–t.”
Finding a provider who could treat her OCD was an uphill battle. Most therapists she called would not answer their phones.
“It’s very laborious on the patient’s side to call 30 numbers and get zero responses. And then, someone calls you back and they say, ‘Hey, you called me.’ I called 30 people yesterday,’” she said.
According to Nathaniel Van Kirk, an OCD specialist and McLean Hospital’s coordinator of inpatient group therapy, Oakley’s experience is a common one. Earlier studies suggest that the average person with OCD waits up to seven years to receive an appropriate diagnosis and even longer to get adequate treatment.
“As a whole, the need for treatment still far outweighs the available services,” he said.
Even though Boston is a hub for OCD treatment, with hospitals like McLean and research meccas like Harvard University, people with OCD still struggle to find treatment to relieve their symptoms. In other areas of the U.S, such as in the Midwest, treatment is even scarcer, Van Kirk said.
However, the COVID-19 pandemic created a boom in telehealth services, which Van Kirk thinks offers hope for those without access to treatment. Out of all the terrible things that came out of the pandemic, Van Kirk said that “teletherapy has been one of the bright spots.”
“We made years of progress in a very, very short time,” he said.
One of the foremost challenges that people with OCD still face is the stigma related to mental health. David Miller, a participant in McLean Hospital’s “Deconstructing Stigma” campaign, who worked for almost a decade as an equal opportunity employment investigator for the government, stigmatized himself into avoiding asking for help.
“I waited because I wanted to be like everyone else. I wanted to get my work done and be a very conscientious worker, but really, I was shortchanging myself, because of my own stigma,” he said.
During his nine years as a government investigator, he did not see a single case of a worker filing a claim for a psychiatric disability. He realized that he was not the only one losing out on disability benefits because of the stigma related to mental health.
“I became a very good actor,” he said.
However, after nine years, Miller took a leap of faith.
“It took me nine years to tell my boss that the reason I could not do certain functions of my job was because I had an obsession with the number 13,” he said.
Miller has stepped back from his life as a government employee and now devotes his life to service. He volunteers at the National Alliance on Mental Illness and serves on a McLean subcommittee on combatting stigma.
“I like to always think of hope. If you lose hope, then you may go down a real slippery slope. And it’s important that if you can’t have hope, then to get the support that will help you maintain hope,” he said.
Wisconsin native Mandy Hougas always considered OCD to be her superpower. When she shared her OCD struggles with her two best friends in high school, she was surprised to hear that one of them had a sibling who also had OCD.
“People started to open up, started to talk about other things. I felt like my senior year of high school, I finally felt connected in a way I never was connected to people before,” she said.
Van Kirk said that one in three people will have some type of mental health diagnosis throughout their lives. And for those that don’t have a diagnosis, odds are that one of their loved ones or friends has struggled with mental health at some point in their lives.
“Mental health struggles are fundamentally human because that’s part of what it means to be human. We struggle and we find a way through,” he said.