“Mom, I think I have OCD,” Tom declared, at just 15 years old. He had spent hours searching on Google for answers to his symptoms. I remember replying in disbelief, “I doubt that, have you seen your bedroom?” My first stereotypical thought was that having Obsessive Compulsive Disorder (OCD) meant that you were neat and orderly and his room was certainly neither of those!. I immediately began doing my own research and was both surprised and scared at what I had learned. Our family’s long journey began on that day.
OCD causes you to have a pattern of unwanted thoughts and fears (obsessions) that cause you to do repetitive behaviors (compulsions). They interfere with your daily life and prohibit you from doing the most simple tasks like brushing teeth, or tying your shoes. In Tom’s case, he was doing 12-14 hours of compulsions each day. That left 10 hours in each day for school work, activities, friends and sleep. It was debilitating. He could not leave his room, go down the stairs, or leave the house without doing compulsions that would only exacerbate his anxiety and make his intrusive thoughts worse.
Tom was officially diagnosed OCD at the beginning of his junior year of high school. I say officially because prior to this he was initially diagnosed with depression and anxiety when he was ten years old. What transpired once we received the correct diagnosis can only be described as the most difficult and heart wrenching time of my life. Up to this point, I had always been able to advise and guide both of my sons through the difficult stages of their lives. I knew that this was something way bigger than me. I felt both guilty and an overwhelming sense of fear. The more I learned about OCD the more the realization set in that this was something that could not be cured. My sweet boy, Tom, would have to live with this mental illness for the rest of his life.
As we began to comprehend this diagnosis, we also had to search for the best therapy and treatment. Although there have been great strides made in mental health care, this was at a time when mental illnesses were rarely even talked about. People actually backed away from me when I shared that Tom had a mental illness. I then refocused my attention on finding the best treatment and care for my son. He was having suicidal ideation, not eating and unable to sleep at night. I spent my nights on the couch or sitting by the front door in fear that he would leave. I began calling every therapist that specializes in the most effective treatment, Exposure Response Prevention (ERP), and was turned away at least a dozen times. There simply was not a therapist within a 90 mile radius that was taking new patients. I was feeling deflated and worried that I would lose my son. I finally made contact with an empathetic psychiatrist that agreed to squeeze Tom in for an appointment. Then, after leaving countless voice messages, Tom’s current therapist called to say that she would see him.
In the beginning Tom’s therapy was 2-3 times a week and home or school visits were not uncommon. Exposure Response Therapy is extremely grueling, and yet Tom never gave up. After his therapy sessions he was always at his worst. My first instinct was to hug him, but he was so anxious and uncomfortable in his own skin after doing expulsions with his therapist that we would always head to Sasco Beach and would walk in silence. It was such a calming place for him.
One afternoon, Tom was especially reflective and shared that he truly felt that he was grateful for his life and had come to peace with having OCD. I remember telling him that we all have our own struggles and they are what makes us stronger. Together, we came up with the mantra “Struggle Into Strength,” and for the past 10 years it has been our family motto.
His dad, brother, and I have always been there to support him at every moment. We will always be so thankful for his teachers, counselors and administrators at Fairfield Warde High School. They were empathetic, nurturing and genuinely wanted to see Tom succeed. In time, Tom’s compulsions became less frequent. He began to have more time each day to do the things that he liked to do. His grade point average went up, and he was able to apply to college.
Tom still has intrusive thoughts, but now he has his own set of tools in his tool box that he can use. He recently finished graduate school and is now the Head Strength and Conditioning Coach at Impact Athletic Center in Half Moon, NY. He is a Lead Advocate for International OCD Foundation and also has his own podcast and website where he advocates for others with mental illnesses.
Tom does have setbacks and still struggles on most days to get out of bed, but he always shows up and does the work. He has a wonderful life, an amazing job, great friends, a supportive and loving girlfriend, and of course his older brother – who is truly his best friend and biggest fan. Tom is not just living with his mental illness, he is thriving in spite of it.
Me? I will always be advocating alongside Tom. I will continue to support him and yes, I will also worry. I shudder to think about what would have been had we not been so fortunate to receive the best treatment from one of the best therapists in Fairfield County. Tom did not give up ten years ago, and I am so grateful. I am also incredibly proud of him. I’ll conclude with something that he too always ends with when he is speaking to others about his journey with OCD….”there is always hope.”
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