Full-time OCD advocate Tia Wilson is stomping out stigma in nearly everything she does, and she does it with such irresistible humor and creativity you almost forget she’s schooling you on mental health! Thank you, Tia, for sharing your story with us and for giving us hope that life with OCD can be fulfilling and fun.
How long have you had OCD? How did you know what you were experiencing might be OCD?
I have had OCD for as long as I can remember. Symptoms started when I was as young as three when I put myself in timeout due to scrupulosity OCD (or fear of being immoral). From there, symptoms expanded and grew as I did, latching on to every facet of my life. My friends, family, faith, existential existence—everything! I slowly started to notice that my friends weren’t washing their hands as much as me or weren’t anxious to walk home because stepping on the sidewalk might not be perfectly symmetrical. So I got good at hiding the more obvious symptoms and doing a lot of rituals in my head—things like compulsively praying, ruminating, or reassuring myself. These symptoms continued to expand through high school as my compulsions grew more and more dangerous. I knew something was wrong but didn’t know what. Eventually in college things hit an all-time low and I started researching. I stumbled upon a book about OCD and the symptoms were so in alignment I scheduled my first therapy session the very next day with a specialist.
Once you knew you had OCD, did you tell people about it? If so, how did you go about it?
I have always been an extroverted person who can’t keep her mouth shut so my close friends and family knew pretty quick. But the shame was so strong I didn’t want to talk to anyone else about it! In fact, I knew word of my treatment would reach extended family so I emailed them to let them know I would not be answering questions. As I navigated the therapy process I started to realize that I wanted to share and help more people like me. I chose to wait until I left therapy to share my story publicly. It was terrifying! I made a post on social media and the response was so loving and has led to the advocacy platform I have today!
Can you tell us about any of your symptoms?
OCD is characterized by having intrusive thoughts that cause you distress and so you do compulsions to try to escape the consequences of them. For me, these thoughts latched onto everything! My religion, my relationships, anything I valued was fair game for my OCD. They could be violent, disturbing, or just plain scary.
“What if that stranger goes home and hurts themselves because I didn’t say hi?”
“What if I go to hell because I forgot to repent for something?”
“What if an earthquake kills my entire family?”
Because of this I would try to do things to give me comfort or certainty like religious rituals, asking for reassurance, sleeping with an earthquake whistle—anything to feel better. It reached a point where I was no longer really able to take care of myself or leave my house because everything felt too daunting.
I love your videos on Instagram—they’re funny but informative, a perfect mix! What inspired you to start spreading awareness that way?
Through proper treatment I was able to go from clinically severe to subclinical—truly a 180-degree shift! My life was exponentially better and I couldn’t wait to share that with others. I’m a creative and love to find unique ways to speak up for the things I care about so my page has become all about that!
I also find that when making videos funny and relatable it helps people who don’t have OCD not only understand it better but also apply principles of recovery to their own life! Because we all have black and white thinking or get stuck seeking certainty to a degree!
Speaking of videos I love, I love “OCD: We Sink.” I watched it so many times when you first posted it, and it still gets me. Can you tell us a little more about it, and what it means to sink?
That is so kind! I was working with these two filmmakers who wanted to showcase OCD in a unique way. We went through many iterations of script and decided the best way to illustrate OCD as it actually shows up (and not in the stereotypical way it’s presented) was to take a step back and share how the process of recovery can look. To “sink” can be interpreted many different ways but to me it’s all about letting go. Stop resisting the uncertainty of the world, stop trying to figure everything out with absolute certainty, stop trying to control what can’t be controlled. Exposure and response prevention (ERP) therapy (the gold standard therapy for OCD) is all about that.
Why does it matter that people know what OCD really is?
It is so misdiagnosed! When I was thirteen I remember talking to a therapist about my struggles and asking whether it might be OCD (some part of me knew deep down I guess!) and she said “Is your room clean?” And I said “never” and she responded that then it must not be OCD. A huge mischaracterization caused by stereotypes. Understanding OCD as simply a cleaning disorder discounts all the other valid ways it shows up. OCD can grab onto anything. Your newborn baby! Your sex life. Your political ideologies. When we recognize this so many more people are able to get help.
If you could share just one piece of advice with someone who has OCD, what would it be?
You deserve to get better. I truly didn’t believe that until I was on the other side! OCD loves to tell us that we are the exception to the rule. But it gets better and small steps build up over time. You can do it!