Happy Monday! Help me welcome Genevieve Kales, who started advocating for OCD awareness a few years ago and has already made a huge impact on our community. You might recognize her from the documentary “Uncovering OCD: The Truth About Obsessive-Compulsive Disorder,” directed by Ethan Smith, in which she shared her experience with OCD.
You played a big role in the documentary “Uncovering OCD: The Truth About Obsessive-Compulsive Disorder.” How did it feel to be so open? What has the response to the documentary been like?
It was scary, to say the least. I remember the feeling of being in the dressing room before getting ready to be filmed. I instantly got tunnel vision, couldn’t feel my legs, and my heart was pounding out of my chest. I felt scared to share my truth. Thoughts were running through my head about what would people think about me. I didn’t think I could do it, being so vulnerable.
I was able to ground myself prior going on with the help of some amazing people who were alongside me.
The response to the documentary was incredible. People reached out to me saying they had no idea how things had really been for me before they saw the documentary. I’m thankful the message of my story came out that way and I’m thankful something with that magnitude displayed my truth. Educating people is our power and how we advocate for those with our illness.
What inspired you to become an OCD advocate?
My first IOCDF conference, I remember seeing people share and talk about their story. I was only 15 turning 16 at the time. I wanted to help others, just like how people had inspired and helped me along my journey. I remember exactly who inspired me to find my truth and I don’t think I’ve ever told him this, but Ethan Smith’s story saved mine. No one told me when I started my journey that I wasn’t alone. I thought I was the only one with this mental illness until I went to a convention and saw thousands. Over the nine years I’ve been going, I see new faces every time. Seeing more and more new faces pushes me to be an advocate.
You’ve presented at several OCD conferences, and a couple of your panels focused on how to navigate relationships with OCD. How has OCD affected your own relationships?
I’d be lying if I didn’t say my OCD was the third wheel in most of my past relationships. I’ve struggled with them for years. Some were healthy and others were toxic and unhealthy. Through the years it triggered my OCD to an unhealthy state and that’s actually what put me into a deep-seeded depression. I was coping in unhealthy ways. My OCD is triggered by traumatic events and life-changing situations. My relationships were the root of most of my problems through the years. I truly didn’t see the light nor did I want help at that time. I struggled; my friends and loved one saw a different side of me. I went through major PTSD, trauma, and pain. It’s a huge reason why I speak about relationships now and over the past few years. I used to think I did not deserve better than the way I had been treated because of my OCD. I struggled with relational OCD and contamination OCD, which was a deadly combo for some of the past relationships I had been in over the years. I now share my story regarding relationships to help others.
I’ve learned over the years how to deal and manage my OCD in relationships. I am currently in the most mentally, physically, and emotionally stable relationship I’ve ever been in. Yes, my OCD pops up in my current relationship and yes it’s been troublesome at times. I do tend to get very insecure due to that. Personally, being open and vulnerable has helped my significant other get a little glimpse into my thoughts and feelings. I shared my OCD with him early on because I’ve learned through my trauma and pain that it’s easier to be honest and open then to hide behind your truth. I wanted someone to finally love me for me!
How long have you had OCD? How did you first realize what you’d been going through might be OCD?
I was diagnosed with OCD at the age of 11 by my family physician. Through the years up to age 11 my family noticed a change in my behavior and tendencies. I feared harming others, I was repeating certain phrases and hoarding certain clothing and accessories, and repeated handwashing. Now, looking back at my life, I see OCD tendencies and traits going back to when I was younger, at the age of 4 or 5.
My OCD manifested over the years into different subtypes. I am currently more of a mental ruminator than physical “compulser” at this point in my life. To be honest that’s been more painful so to speak because my head becomes a dark place more often due to more of my compulsions and thoughts being mostly mentally intrusive.
Once you were diagnosed how did you go about treating it?
Being diagnosed at age of 11, I was mad, angry, and to be honest didn’t want to believe I was different. I didn’t want to believe I wasn’t like the other kids. I didn’t seek help till I was 14 or 15 and didn’t know where to start. I didn’t want to accept therapy back then because I though therapy was only for people who were very sick. I was in denial.
The intrusive thoughts and repetitive actions seemed impossible to stop. I couldn’t believe I was struggling that much. So, I carried on with my middle school life and didn’t let it really bother me, or so I had thought. I started seeing myself changing and being fearful of everything including student lunch time. Sitting next to people in close quarters being scared of everything. I started treatment after I remember going into the bathroom and crying and screaming “Why am I not like other people”. I didn’t want to go back to school. I started treatment and found a therapist that was a good fit for me. It took a few tries to find someone who I connected with. Looking back at it now, my journey was mine for trials and errors. I wouldn’t change my struggles because it made me into the women and advocate I am today.
How did you tell your family and friends about your diagnosis? Were you nervous?
My immediate family knew and was by my side through it all. They didn’t quite understand what I was going through but they supported my process and treatment. My mom researched everything and how to help me. I didn’t tell my friends or public till I was in my second year of college. I went through about four years of treatment before I felt comfortable telling people. I was afraid of judgment. The only people who knew about my illness was my parents and sister, for a long time. It’s how I choose to keep it. I wasn’t ready to be judged or bullied due to my illness. I wasn’t prepared to be different. I was incredibly nervous to be vocal about it.
As years went by I knew my voice and story could help those fighting similar battles. I knew that as my story grew in the mental illness avocation community, it would soon be known in the world. I came out about it publicly in 2017.
We’re all going through such a strange time with COVID-19. Some of us with OCD feel as though OCD prepared us for living with so much uncertainty and even isolation. How have you been coping with the doubt?
Well, I know one thing for sure is my OCD has prepared me for everything including a pandemic and The Purge. My anxiety has, of course, been difficult to handle. My depression has been slipping in, but many years in therapy has prepared me for times like this. Even if certain days are more challenging, I know “this too shall pass.” I feel as if my OCD likes this isolation. No germs, people, or social gatherings. Sounds great, right? Yet, the fear of health and harm trigger my OCD. I’ve been worried about the health of my loved ones. I try not to let my mental rumination take hold of me as I practice what I’ve learned through therapy to keep me grounded.
If you could share just one piece of advice with others who have OCD, what would it be?
I know what it’s like to cry alone on your apartment floor at 2 a.m. because you just can’t do it anymore. I know what it’s like to feel hopeless and at rock bottom. It does get better. When I started my journey, I wish I had known that I wasn’t alone. I also, felt like I was the only one dealing with it. I wondered “Why am I anxious and depressed?” “Why am I the one that has to experience this?” I didn’t know there were millions of people just like me. I wish someone told me it’s okay to not be okay and that you are never alone in your fight with mental illness.
Alison Dotson 