Please help me welcome Morgan Rondinelli to Tuesday Q&A! I loved getting to know her better through her answers, and realized how much we have in common—and not just in our OCD stories. When she included the “fun fact” that she recently declared a minor in writing, I knew she was a girl after my own heart. I hesitate to call Morgan wise beyond her years, but when I was 21 I had none of this figured out. Thanks for spreading awareness and living fearlessly, Morgan!
When were you diagnosed with OCD, and how did you first realize you might have it?
I was first diagnosed at 20, the summer after my freshman year of college, but I am pretty sure I have had OCD my whole life. As early as elementary school, there were weird behaviors I had to do, such as tapping the light switch when I left a room or “knocking on wood” a certain number of times if I thought about someone dying. I knew these were irrational and stressful, but I just accepted them as part of my day. I even remember being aware that my fears changed every couple of years. If a fear was particularly distressing, like the “knocking on wood fear” was, I would just hope that when it switched in a few years it would switch to something less stressful.
As I got older though, I began to realize that maybe my level of stress wasn’t “normal.” I even started seeing a therapist for more generalized anxiety and depression. I don’t think I thought my weird fears and rituals were relevant and something I should mention. My junior year of high school I took AP psychology, and after learning about mental illnesses, I think that’s when I first began to wonder if I had OCD specifically. I even chose to write my research paper on OCD, which was probably an excuse to read more about the disorder. Even after learning more about the disorder, though, and starting to think this was probably what I had, I still for whatever reason kept silent about it.
It wasn’t until I went to college that my OCD got severe enough that I couldn’t remain silent. The stress of moving away from home and taking difficult classes caused my OCD to grow rapidly, especially since I had never learned how to fight my OCD with exposure and response prevention (ERP). I was terrified of my dorm room catching fire, hoarded Post-it notes filled with nonsensical lists, and was unable to read because I would reread so many times, among other things. I started researching my specific fears and OCD again. I read a lot of blogs, probably including yours, and watched several documentaries. At that point, it seemed clear to me that I had OCD; it fit too well. That following summer I asked my mom if I could see a different psychologist and that professional easily diagnosed me with OCD.
I was so relieved to be diagnosed with OCD, but some people feel ashamed and embarrassed to have been “labeled” with a mental illness. How did you feel about your diagnosis?
I was definitely in the camp of feeling relieved. (I wrote this blog post about my thoughts just after I was diagnosed.) Because this was something I had been secretly struggling with for over a decade, learning it had a name, there was an effective treatment, and there were other people who understand felt incredible. Having the diagnosis certainly didn’t take away my OCD, but it did give me hope that I could get better and made me feel empowered to fight back. Maybe if I had been diagnosed when I was younger I would have felt differently, but a diagnosis was something I sought out as the first step to helping myself.
At first, I was shy about revealing my diagnosis, even to close friends. I don’t think it’s because I thought they would react badly, but because I didn’t know how to even start explaining it since I had done such a good job keeping it a secret. With practice, I have become more comfortable sharing my diagnosis and story. Today, I feel next to no shame about having a diagnosis of a mental illness. It truly is just an illness, probably caused by a mix of my genes and the environment I grew up in, so I don’t view it as different from any other illness.
With a blog of your own as well as features on The Mighty, speaking events, and videos, at age 21 you’re already a recognized voice for individuals with OCD. How did you get into advocacy? Did you expect to be heard so quickly?
Oh gosh, that’s weird to hear someone as prominent as yourself call me a recognized voice for people with OCD. But to do my therapy homework for the week, which is practicing aligning how I see myself with how others see me as competent, thank you!
I started my blog shortly after I was diagnosed with OCD, and that was probably my first step into advocacy. Really it just started as a place to express myself after keeping all of these thoughts and fears secret for so long. I hoped other would read it, but I didn’t mind if I was just writing for myself. Gradually though, I became more interested in also using my writing for advocacy. I started sharing my blog more widely and looking into other places to publish essays or speak.
Around the same time I started my blog, I also got involved with mental health organizations on my campus. My first big involvement was speaking in our first ever Mental Health Monologues show about OCD. Since then, I have stayed involved with several mental health clubs on campus and now direct the Mental Health Monologues show. I love being able to write for different websites and reach individuals with OCD, or people who just want to learn more about the disorder, anywhere in the world. But there is something powerful about speaking and advocating in your own community, and meeting other advocates on campus.
One of your posts I really identified with—and I identify with a lot of them!—is Why it’s tricky to joke about OCD. Not to toot my own horn, but I have a great sense of humor. I love to laugh and to be goofy and I feel uncomfortable around overly serious people. But I cannot get on board with jokes made at the expense of OCD sufferers. What prompted you to write this particular post? Have you ever called someone out for making light of OCD, and if so, how did that go?
What prompted me to write this post was how many times I have heard or read people saying people with mental illnesses just need to take a joke and learn to laugh at themselves. The thing is, I do laugh at myself and about my experiences with mental illness. A lot. But the difference is underneath it all, I know just how serious and painful OCD and other mental illnesses truly are. Whereas, I don’t think most people joking about the disorder really grasp how bad it can be.
I think about this especially when I am in my worst moments with OCD. I am vastly better compared to when I was first diagnosed, but I still have OCD and there are still times when I get quite stuck. To go off on a tangent, the most recent example was this summer, when I came home from taking classes at my school’s biological station. I had gotten little sleep, taken an exam that morning, and then rode several hours home, all of which are the prefect recipe for OCD. When I got home, I learned a pipe had burst a few weeks ago and water had gotten in our basement. To keep my college stuff (which of course I kept in the basement) from getting damaged, my mom had to move it. For most people this might seem inconvenient or even a little stressful. But for someone with OCD, small things can be very big things.
I still have a massive fear of people touching my things and rearranging them, especially if things are placed in multiple rooms, rather than all together. I am irrationally terrified that something will get damaged or lost. When I got home and saw my stuff, I was completely flooded with anxiety and had a breakdown. I ended up curled in a ball on the floor in between piles of my stuff, sobbing for about three hours. Once I could move again, even though I was exhausted, I ended up staying up late carrying boxes around and reorganizing all my stuff. It’s hard to describe just how overwhelmed and stressed I was about this, and about things as simple as one pair of shoes being put in one room and another being put in the room next door.
I wish people who joke about OCD could see moments like this. Most of the time I am a normal-looking, high-functioning individual, but not when OCD is hitting hard. If they could see these moments and how serious and painful the disorder is, I don’t think they would ever joke about OCD again.
When I joke about the disorder, I’ve lived through these moments. I know they are the reality. I think it’s that knowledge of how bad something can be that makes it okay to joke about it. On a similar note, I’m not bothered when someone like my psychologist jokes about OCD. He treats countless patients a week and, again, knows how debilitating and painful the disorder can be. I know he knows this and empathizes with his patients, considering he is spending his whole life treating the disorder, so I can laugh and joke along with him in those contexts. It’s that underlying understanding of what OCD really is that make it okay to use humor to cope.
The other large reason why jokes about OCD bother me is the simple fact that it perpetuates myths about the disorder and increases the time it takes before individuals who actually have OCD get diagnosed and treatment. I like to hope that if society jokes about OCD less and instead has a better understanding of what the disorder really is, the gap between onset and diagnosis will decrease, which only increases someone’s prognosis of recovering.
Did you have any hesitations about sharing your story before you started your blog? What has the response to your advocacy been like?
I definitely had some hesitations at the start, and originally used a pseudonym on my blog rather than my real name. My main concern was that when I go to apply to graduate schools, someone will see it and it will negatively influence their decision. At this point though, over two years into writing and speaking publicly about OCD, I’m pretty much an open book. That might be because responses have been overwhelmingly positive, from both friends and strangers. It especially makes it worth it if I see someone found my blog by searching their symptoms or tells me something I wrote helped them, just as others’ blogs helped me. I’m glad I can give back to others just figuring out their own OCD.
As for graduate schools, I’ve decided if a school doesn’t accept me because I speak openly about my mental illness, then that isn’t a school I want to attend anyway. I want a school that values and supports the mental health of their students, and a campus that has open conversations about mental health.
For me, writing and speaking at conferences about my OCD has been like ERP because (a) public speaking has always made me really nervous and (b) I hid my obsessions for years and years. Have you found your advocacy to be beneficial to your mental health?
For as shy as I am in person, it might seem weird that public speaking doesn’t make me uncomfortable. I think it’s like when I dance; I’m a completely different person when in front of an audience and “performing.” So yes, I do find writing and speaking about OCD beneficial to my mental health. It provides a great outlet for me to express things I might have otherwise kept to myself for another decade. Writing, in particular, tends to boost my mood and I always feel better after I write. One of many reasons why I have just declared a minor in writing!
If you could share just one piece of advice with others who have OCD, what would it be?
If possible, find a good therapist who knows ERP. Expose as much as possible and make uncertainty your best friend!
Alison Dotson 