Finding New Ways to Advocate for OCD: Katy Marciniak

Help me welcome today’s guest, OCD advocate Katy Marciniak! As you’re about to read from Katy herself, she has dipped her toe into different kinds of advocacy and has found ways to spread awareness that work best for her and her life as a busy parent of two. I see so much of my story in Katy’s, and I hope you relate, too, even if your OCD journey has looked a little different. Thank you, Katy!

When were you diagnosed with OCD, and how long did you experience symptoms before you started to get some answers?

My OCD symptoms onset around the age of twelve and I experienced symptoms of varying degrees up until about twenty-three, without having any understanding that I had OCD.

I was terrified to go to therapy. When I was in graduate school I started to realize what I was experiencing may be OCD. I finally found a therapist and was diagnosed and received therapy for a short period of time. Eventually I convinced myself I could handle my OCD without professional support. Years later I started to fall apart, and my OCD really began to infiltrate all aspects of my life. I was resistant to attempting therapy again but I knew I couldn’t cope alone anymore. After a couple failed attempts at finding someone who could effectively treat OCD, at the age of twenty-nine, I finally found myself in the office of a therapist who specialized in OCD. It was the start of a life-changing experience for me. I worked with that therapist for seven years, and it gave me my life back and so much more.

Can you share some of your obsessions and compulsions with us? Did you have any idea they were symptoms of OCD?

As a child my obsessions were often centered around harm, and they onset shortly after seeing media coverage of a school shooting. My mind started to be flooded with these horribly violent thoughts. I had no idea why it was happening, and I was so disturbed and disgusted by it. The more I tried to make it stop, the worse it got. Everything started to be a trigger for the thoughts. I remember feeling so broken and isolated. I would obsess the thoughts meant something awful about me, and I would try to reassure myself that it would be okay through all sorts of compulsions like counting, praying, and eventually just incessantly seeking reassurance from others that I was indeed a “good person.” I had no idea what I was dealing with, and it really felt unbearable so many days. I was too afraid to ask for help, because I didn’t want what I was experiencing to be misinterpreted. That experience as a kid really rocked me, and I tried to cope with it alone for a long time. Eventually the day-to-day intensity of what I was experiencing gradually decreased, but various times as I got older I would have episodes where I would really struggle to cope with triggers. 

Between the onset of my OCD and eventually finding the help I needed at twenty-nine, my OCD went on a world tour of different obsessions and compulsions. I’ve struggled with many subtypes of OCD throughout my journey. Most of the obsessions falling under moral scrupulosity and the general theme of making sure I was doing things “right” and was a “good person.” Until I really found the right support in an OCD therapist I didn’t really see my struggles as OCD, I more or less thought something was just wrong with me. Now at thirty-six I still struggle with my OCD from time to time, but I feel like I’ve acquired the tools I need to cope when I do start to struggle. I’ve been incredibly empowered by the things I’ve learned in therapy over the last few years, and ERP has kind of just become a part of life. I try to follow my values, and learn to sit with the uncertainty that comes up along the way. Regardless if I had OCD or not, I kind of think that’s what it means to go after what you want in life; having OCD just makes that journey a whole lot more rugged at times.

You have two children. Do you feel like your OCD has impacted your parenting journey?

Absolutely. I think one of my most daring exposures was becoming a mom. After getting married I was pretty convinced I couldn’t hack it as a mother, but after working through a lot of my OCD I realized I valued starting a family. It was something I wasn’t willing to give up.

I worked really hard in therapy to address my OCD before I got pregnant, and continued that work through my first pregnancy to really get ahead of what my OCD “might” throw at me, which in turn helped so much once my daughter arrived. I will forever be grateful for the therapy experience I had, that helped support me into and through my first few years of my parenthood journey with both my daughter and son.

There for sure have been challenging moments with my OCD, but it is such a gift to have my children in my life. Having kids is a never-ending exposure. You really never know what they are going to throw at you. Some of those things I’ve handled with ease, and other things took more work to get through. There is so much love, pride, and joy to be found in motherhood, even with your OCD along for the ride. I have found my greatest joy in my children, and not in those picture-perfect moments, but rather in the mundane, simple moments where life seems to move in slow motion and I’m 100 percent present for their joy. Therapy helped me acquire the tools to truly show up for these moments. There is a certain level of joy I don’t think I had ever experienced until I had kids.    

You’re an IOCDF Advocate. What does that entail, and why did you decide to join the advocate program?

I looked into the IOCDF Advocate program when I was trying to expand the way in which I was advocating. I had a blog, been interviewed on podcasts, spoken at the IOCDF conference, and had an Instagram page, but I was trying to find a way to get plugged into other opportunities. At the time a lot of advocacy was focused on social media for me, and I really felt strongly I needed a break from that. Social media can be beneficial, but being unplugged from social media across the board for an extended period of time had an indisputable positive impact on my mental health. I chose to pursue other ways I felt I could make a difference, so I applied to the IOCDF Advocate program and was fortunate enough to be selected. Essentially it’s a group of advocates made up of professionals, sufferers, and family members trying to educate about OCD and raise awareness through different initiatives and projects across different mediums. It has been wonderful to be a part of.

You also have a blog, Navigating Uncertainty. What inspired you to start sharing about your experience in that way? 

I read this question and I had to pause a second, because I actually still can’t believe I ever started a blog. I was pretty convinced I would never share my experience with anyone. . .like no one. Even once I started effective therapy I found it laughable when my therapist suggested I share my writing.

Eventually given some time and progress in therapy, I started to realize that writing was incredibly therapeutic in many ways. I kind of turned to it when I was struggling or I had an insight burst. The more I worked through my OCD I started to wonder if in some way my writing could help someone in their journey. I often thought of the younger version of myself desperate for answers, and the validation and hope that maybe I could provide to someone else started to outweigh the fears and hesitations I had. I was inspired by others sharing their stories and grateful for them doing so (yourself included!). Eventually I just went for it, but honestly it has never felt “easy.” I often write things and am hesitant to post. The OCD shame bug still gets me sometimes. I go through periods where writing comes easier and I want to share, and other times my blog just kind of sits. I’m okay with that though. So really I think the therapy process as a whole inspired me to write.

Do you have advice for someone who’d like to advocate for OCD awareness but doesnt know where to start?

Any advocacy effort matters, so do what feels right for you, and meet yourself where you are at. You don’t have to share everything, you don’t have to share it in any certain way, and you don’t even have to share your journey. I think it’s so easy to start comparing yourself to other OCD advocates and feel like you aren’t doing enough, so it’s important to remember advocacy looks different for everyone, and all of it makes a difference. I also think it’s important to remember you don’t have to advocate all the time. I’m passionate about advocacy, but I’m also passionate about living the life that I won back from my OCD. Sometimes focusing on advocacy isn’t where I want my mental energy, and I’m realizing that’s also okay.

If you could give just one piece of advice to someone with OCD, what would it be?

Know that it’s going to be okay, and keep showing up for yourself by compassionately holding yourself accountable to doing the work throughout the journey. That doesn’t mean you have to do it all, or do it perfectly, but remember that you deserve to get better, and it starts with showing up for yourself wherever you’re at. That will look different at different phases. I also can’t forget this inspiring quote I once heard in therapy that helps more than you could imagine: “Flick self-judgment away like a booger.”