PLEASE NOTE: The following blog post contains discussion of topics that may be upsetting, including suicide. Please take care of yourself as you read this article. If you are in crisis, know that help is only a call or click away at 1-800-273-8255 or suicidepreventionlifeline.org.
Chapter 6: Life after treatment
Several years after extensive treatment, here I am about to graduate college. I was able to take acting classes and improve myself as an actor. I was in many plays and musicals during my time in college. I made connections with my peers and with my professors. I was able to study abroad for a summer in Barcelona. I tried new foods and explored Europe. I now live on my own in an apartment with my friends. I cook meals for myself every day. I have the most wonderful friends who are supportive and kind. I work at a toy store down the street from my apartment. I love to do art and my bedroom is covered with my imperfect paintings and drawings. I love to write stories and plays and I share them with my teachers and with my friends. I can finally say that I am living a happy life. These are all things I never thought I would ever be able to do because of how OCD had taken over my life.
Of course, I still have challenges in regards to my OCD. Occasionally my OCD will slip into my school work. I often have to challenge myself to do things imperfectly instead of striving for perfection that will never be. I still have a hard time eating from time to time. Trying new food is hard, though I can usually get myself to do it. Washing dishes in my apartment can sometimes be a challenge. I sometimes will feel insecure in my friendships and will compulsively ask for reassurance that everything is still okay.
Despite these challenges, I can gladly say that OCD does not impede on my ability to function. I now consider myself to have mild OCD, where at one point it was considered to be extremely severe. I never thought I would be in a place in my life where OCD wasn’t always on the forefront of my mind, but these days it doesn’t come up much at all.
Before treatment, I was always secretive about my struggles with mental health. I felt ashamed and never wanted anyone to know what I was dealing with. When it was time for me to go back to school, I knew that people would have questions about where I had been for the past few months. My therapists at the program told me that I should have an answer prepared for these questions. They told me it was completely up to me how much I wanted to tell people or if I even wanted to tell people at all. I spent a long time thinking about what I wanted to tell people. I practiced answering the questions in the mirror before bed. I ultimately decided that the telling the truth would be the easiest route. I didn’t want to hide what I was going through anymore. After going through treatment, I didn’t have nearly as much shame surrounding my OCD. I knew that it didn’t define me. I also knew that the lack of education available about OCD was the reason why there were so many misconceptions about it. I decided that I was going to be an advocate for myself and for the other people in the OCD community by being open and honest about my experiences.
The first person I ended up telling was a girl in my tutoring group. She asked me one day why I was there. I hesitated at first. My instinct was to brush her off. I took a deep breath and I told her that I was getting tutoring because I had missed school for a few months to do intensive treatment for my OCD. She asked me questions about what it was like and I answered honestly. I told her that it was long and difficult but that it ultimately was the thing that saved my life. She told me that she was asking so many questions because she had just been diagnosed with OCD and she was looking for treatment options. We talked for a long time about what treatment options are available and commiserated about the things that OCD had taken away from us.
To this day, I try to be open and honest about my experiences with OCD. I aim to educate the people around me about what OCD is and how misunderstood it can be. For the past few years, I have led a team for the IOCDF 1 Million Steps for OCD Walk. Together with my team, I have been able to raise money for this organization that means so much to me and my family. Every year at the Walk, I get to see some of my old therapists who are also walking. They always tell me how proud they are of me. I can’t help but agree with them. I couldn’t be prouder of how far I have come.
Conclusion: Looking Back
I have a memory of being in a heap on the floor in front of my parents’ bedroom door. I was probably about five or six. I remember banging my tiny fists on their closed door and screaming for them to hear me. I banged on the door until my hands were bruised and I screamed until I lost my voice. I eventually gave up and wept right there on the floor. I felt alone and scared. Did they not hear me? Or did they just not want to listen? After a while I brought myself back to my bed and stared at the ceiling until I fell asleep.
I look back at that tiny heap on the floor and I see that all she wanted was to be heard. She was scared and didn’t know how to express that to the people she loved the most. She yelled and screamed at them and pushed them away. I look back and see I was doing the best I could with what I was given. Struggling with something didn’t make me a bad kid.
I still am working on not viewing myself as someone who was a bad or angry kid. I also look back at my parents and know that they were also doing the best they could. We were all fighting OCD even though it might have seemed like we were fighting each other at the time. This is why educating people about OCD is so important. The more people know about it, the easier it will be for families to spot when their child is struggling.
Since my diagnosis in 2015, my dad has made education his mission. The hospital where I did my program was participating in a walk for OCD. My dad asked to join their team even though no one else in my family was able to go with him to the walk. At the walk he met some other 50 people who had had similar experiences as our family. They encouraged him to get involved with the International OCD Foundation.
After hearing about the foundation he decided he wanted to be involved. In the summer of 2017, I went to San Francisco with my dad for the Annual OCD Conference. While at the Conference I went to seminars and met other people who also had OCD. I learned so much about OCD and how to be an advocate for people with OCD.
I know that I am incredibly lucky to be able to tell my story. I am thankful that I was fortunate enough to have access to the treatment that got me to where I am today. Not everyone who has OCD is so fortunate. Many people cannot afford treatment. Others live far away from any sort of program for OCD.
A lot of these people who are struggling go their whole lives without receiving any treatment, simply because of a lack of accessibility of treatment. Many will not even receive a diagnosis due to lack of understanding of this disorder. Without any sort of treatment, I don’t know what my life would have looked like. It is likely that I would not have lived long enough to be where I am now. OCD disrupted my life for over 17 years and I will not allow it to disrupt my life moving forward. That being said, I know that it is a privilege to be able to say that.
OCD can be complicated and hard to understand. It can be difficult to recognize in both children and adults. However, there is always hope for a better life free from OCD. There is no cure, of course. I will be living with OCD for the rest of my life. It will ebb and flow and sometimes it will make my life more difficult. Having these experiences with OCD has made me strong and resilient. I am very different than I was when OCD had its hold on me. But I will always have a soft spot for that little girl crying in a heap outside her parents’ bedroom door.
Adams, Gail B., et al. “Obsessive Compulsive Disorder in Children and Adolescents: The Role of the School Psychologist in Identification, Assessment, and Treatment.” School Psychology Quarterly , vol. 9, no. 4, Win 1994, pp. 274–94. 1995-33363-001, EBSCOhost , doi:10.1037/h0088290. Beyond Fear: Incompleteness and Disgust in Pediatric Obsessive-Compulsive Disorder . Lund University, Faculty of Medicine, 2019. Children with OCD. [Electronic Resource] . New York, N.Y. : Films Media Group, , c1997., 1997. Chilvers, Rebecca. Different for Dads? : The Association between Paternal OCD, Parenting and Child Functioning . 2013. Dacey, John S., et al. Your Anxious Child: How Parents and Teachers Can Relieve Anxiety in Children . John Wiley & Sons, Incorporated, 2016. ProQuest Ebook Central , http://ebookcentral.proquest.com/lib/emerson/detail.action?docID=4457837 . Gold-Steinberg, Sharon, and Deirdre Logan. “Integrating Play Therapy in the Treatment of Children with Obsessive-Compulsive Disorder.” American Journal of Orthopsychiatry , vol. 69, no. 4, Oct. 1999, pp. 495–503. 1999-01577-007, EBSCOhost , doi:10.1037/h0080 Hershfield, J., & Bell, J. (2016). When a family member has Ocd: mindfulness & cognitive behavioral skills to help families affected by obsessive-compulsive disorder . Sydney: Read How You Want. 53 “International OCD Foundation | What Is OCD?” International OCD Foundation , https://iocdf.org/about-ocd/. Accessed 4 Sept. 2019. “International OCD Foundation | Have We Forgotten the Children Who Have a Parent with OCD?: Accommodation and Early Intervention.” International OCD Foundation , “International OCD Foundation | My Parents Don’t Believe I Have OCD.” International OCD Foundation , https://iocdf.org/expert-opinions/my-parents-dont-believe-i-have-ocd/. Accessed 4 Sept. 2019. Ivarsson, Tord, and Robert Valderhaug. “Symptom Patterns in Children and Adolescents with Obsessive–compulsive Disorder (OCD).” Behaviour Research and Therapy , vol. 44, no. 8, Aug. 2006, pp. 1105–16. ScienceDirect , doi:10.1016/j.brat.2005.08.008. Kelly, K. (2018, December 7). ‘Glee’ Jayma Mays has OCD like character Emma. Retrieved from https://www.digitalspy.com/tv/ustv/a331994/glee-jayma-mays-has-ocd-like-character-emma/ Kenyon, Katherine M., and Warren O. Eaton. “Age at Child Obsessive-Compulsive Disorder Onset and Its Relation to Gender, Symptom Severity, and Family Functioning.” Archives of Scientific Psychology , vol. 3, no. 1, Nov. 2015, pp. 150–58. 2015-51690-001, EBSCOhost , doi:10.1037/arc0000022. Kohler, Kirsten Celeste, et al. “Living with Obsessive-Compulsive Disorder (OCD): A South African Narrative.” International Journal of Mental Health Systems , vol. 12, no. 1, Dec. 2018, p. 73. Springer Link , doi:10.1186/s13033-018-0253-8. Landsman, K. J., Rupertus, K. M., & Pedrick, C. (2006). Loving someone with Ocd: help for you and your family . Oakland, CA: New Harbinger Publications. 54 Leonard, Henrietta L., et al. “A 2- to 7-Year Follow-up Study of 54 Obsessive-Compulsive Children and Adolescents.” Archives of General Psychiatry , vol. 50, no. 6, June 1993, pp. 429–39. jamanetwork.com , doi:10.1001/archpsyc.1993.01820180023003. Myrick, Amie C., and Eric J. Green. “Incorporating Play Therapy into Evidence-Based Treatment with Children Affected by Obsessive Compulsive Disorder.” International Journal of Play Therapy , vol. 21, no. 2, Apr. 2012, pp. 74–86. 2012-10037-001, EBSCOhost , doi:10.1037/a0027603. Newhouse-Oisten, Mindy K., et al. “An Evaluation of Modified Exposure Therapy for a Child Diagnosed with Obsessive Compulsive Disorder and Pervasive Developmental Disorder–not Otherwise Specified.” Behavior Analysis: Research and Practice , vol. 16, no. 3, Aug. 2016, pp. 147–55. 2016-31966-001, EBSCOhost , doi:10.1037/bar0000048. Reid, Keshia M. “The Relationship Between Parents’ Poor Emotional Health Status and Childhood Mood and Anxiety Disorder in Florida Children, National Survey of Children’s Health, 2011–2012.” Maternal and Child Health Journal , vol. 19, no. 5, May 2015, pp. 1071–77. Springer Link , doi:10.1007/s10995-014-1607-8. Stearns, Peter N. Anxious Parents : A History of Modern Childrearing in America . NYU Press, 2003. Viol, Kathrin, et al. “Erroneously Disgusted: fMRI Study Supports Disgust-Related Neural Reuse in Obsessive-Compulsive Disorder (OCD).” Frontiers in Behavioral Neuroscience , vol. 13, 2019. Frontiers , doi:10.3389/fnbeh.2019.00081. Weg, Allen Howard. OCD Treatment through Storytelling : A Strategy for Successful Therapy . New York : Oxford University Press, 2011., 2011. 55 Wu, Monica S., et al. “Comparing OCD-Affected Youth with and without Religious Symptoms: Clinical Profiles and Treatment Response.” Comprehensive Psychiatry , vol. 86, Oct. 2018, pp. 47–53. ScienceDirect , doi:10.1016/j.comppsych.2018.07.009.