Advocating for OCD on Twitter: Shira Folberg

Shira Folberg is a force to be reckoned with! When she tweets about mental health and obsessive-compulsive disorder (OCD) in particular, people pay attention. She’s also started a personal blog about her experiences with OCD as well as a series called Faces of OCD with the International OCD Foundation (IOCDF). Shira has gone through a lot with OCD, but she’s come out the other side with a passion for spreading awareness and helping others get to a diagnosis and proper treatment sooner. Thank you, Shira!

Shira, you’re only 18 but you’re already making a huge impact on the OCD community! Why did you decide to start advocating for OCD awareness?

I don’t think I ever really made a conscious decision to start advocating. As you know, I started off doing some advocacy on Twitter, but the story of why I decided to get Twitter is actually kind of funny. Several months ago, I watched a Netflix comedy special by a comedian I’ve always admired and he did a whole bit about OCD that really irked me. I wanted to reach out to his writers about it, and figured I could contact some of them via social media. That’s why I made my Twitter account. I never heard back from any of the writers I contacted and I’m pretty sure one of them blocked me. But that was what inspired me to get Twitter. I think a lot of my advocacy comes from a place of frustration and a sense of injustice when I encounter stigma (like the OCD bit in the comedy special). I’ve seen so much suffering caused by OCD and other mental illnesses and if there’s anything I can do to fight the stigma around it, I will.

Speaking of spreading awareness, you just had an enormously popular tweet! You summarized what so many have been trying to impart for years, feeling like we’re talking to a brick wall—but people paid attention to your tweet. Were you surprised by the reaction? What led you to write that tweet and include what you did?

Yeah! That whole thing was wild! I certainly did not expect for that tweet to blow up in the way that it did. I really wish I had a better answer as to what inspired me to write the tweet, but the truth is that I didn’t really plan it out. I just sort of wrote what was on my mind. I just listed off some misconceptions about OCD and reiterated that they were misconceptions, and that the symptoms of OCD are not favorable. Most of my Twitter activity is around mental health and OCD, and I don’t think I’ll ever be 100 percent sure as to what made that tweet take off (as opposed to any of the other hundreds of tweets I’ve written on the same topic,) but I’m so grateful for the overwhelmingly positive response that it got.

Why is it important for us to clear up these misconceptions about OCD? What’s the harm in some people not understanding exactly what OCD is?

I think that any misconceptions that romanticize or fetishize any physical or mental illness or disability can be harmful. The stereotypes reducing OCD to being clean and organized are dangerous because they have the potential to discourage people experiencing real symptoms of OCD from seeking help. If I’m having intrusive thoughts around harming my parents and I’ve only ever heard OCD used in the context of cleaning, I might be much less likely to speak openly about what I’m going through or seek help.

I also believe that if society was more educated about OCD and aware of the symptoms and warning signs, people could be diagnosed earlier. Early intervention is so beneficial, and if educators were trained to recognize these symptoms in their students, it might be more likely to happen. The longer symptoms go undiagnosed, the worse they’re likely to get. But if these misconceptions remain prominent, early intervention (let alone appropriate intervention) is a lot less likely.

After this tweet went viral you compiled some “what OCD is not” responses in a blog post. Was there one that particularly spoke to you? Why?

I think I managed to read most of the 800+ comments and reading them was incredibly emotional and powerful. There wasn’t one tweet that spoke to me more than others. I was really moved by the honesty in the comments, by the willingness of these strangers to be vulnerable and open about their struggles. As you know, it’s not often easy to be open about the specific content of your intrusive thoughts, but people were. And honestly, those comments were what made the tweet so powerful. There were so many responses along the lines of “Oh my gosh! I thought I was the only one who had this!” The whole thread proved that there is power in sharing your story. That was what stood out to me.

You also recently wrote a blog post in response to the misguided Wall Street Journal article about dealing with COVID-19 called “We All Need OCD Now.” What did the author of the piece get wrong?

As I talked about in the blog, the problem was less about what the author got wrong and more about what the author failed to mention. In the op-ed article, the author references evolutionary theory, saying that OCD exists because it served an evolutionary purpose of keeping us safe and away from dirty and potentially harmful things. And while it’s true that anxiety (and all emotions) serves a biological purpose, that doesn’t make OCD itself useful, productive, or safe. The author also fails to properly illustrate the extent to which OCD can debilitate a person. He talks a lot about what his client does, but not a lot about what actually goes on in his client’s head. It’s a mental disorder, but there’s no mention of OCD cognitions or the OCD cycle. These are some specifics I noticed when reading the piece, but the truth is that the author gets it wrong in the title. We don’t need OCD right now. And it’s not the same as a healthy amount of anxiety.

When were you diagnosed with OCD? How many years passed between your first symptoms and getting diagnosed and into proper treatment?

The onset of my OCD was pretty sudden and severe, and my parents took me to a child psychologist in my area when I was nine. I was actually diagnosed by my psychiatrist a short while later, who recognized my “timing” rituals as compulsions. We were lucky enough that the psychologist I was seeing was familiar with exposure therapy, and I got enough help to return to my quote-on-quote “baseline” for a while. I was in exposure and response prevention (ERP) therapy on and off until I was 16, when my OCD became so debilitating that I couldn’t go to school and I had essentially stopped functioning. Later that year, I was lucky enough to get residential treatment at the OCDIjr in Massachusetts. That treatment saved my life, and gave me invaluable skills that I will carry with me for the rest of my life. This question is hard for me to answer, because while my outpatient therapists growing up used the right treatment with me (ERP,) it became increasingly apparent that I needed a higher level of care as I got older. But the short answer is that I was incredibly lucky: I got ERP treatment almost instantly upon diagnosis. But most people don’t, and that needs to change.

You spent so many of your teens years in treatment for OCD that you earned a GED instead of a traditional diploma. What advice do you have for kids and teens whose daily lives have been put on hold by this illness?

Here’s the biggest thing: school can wait. Your health is always the top priority. And by taking time off to get the help you need, you are in no way compromising your academic or professional future. If anything, you’ll be able to perform better academically in the long run once you have had treatment. You can still graduate high school, even if it takes a bit longer than expected. Getting a GED was the right choice for me, but everyone is different. And if you do decide to get a high school equivalency like I did, you can still go to college. I wrote my college essay about my experience with OCD and I ended up getting merit scholarships for six different schools. In short: mental health comes first. You won’t jeopardize your education by caring for it.

Tell us about some of the work you’re doing with the IOCDF.

Yes! I love the IOCDF. I am so grateful for the tremendous community I have found through the foundation. Last week I participated in a teen town hall through Facebook Live, moderated by Ethan Smith. I got to talk with some therapists and another teen on topics specifically related to OCD in young people, as well as answer some live “audience questions.” We’ll be doing another one this weekend, as well. I’m also working on a blog called “Faces Of OCD” through the IOCDF. It’s been almost two months since my last post, but the next one is in the works, and I’m making a plan to post regularly. The purpose of the blog is to give faces and voices to a disorder that is so often invisible and silent, and for people to share who they are outside of (and despite) their OCD.

If you could share just one piece of advice with others who have OCD, what would it be?

I’m not sure this is advice and I know it’s pretty cliche, but it’s true: you’re not alone. You are not the only person going through this. There are millions of people going through similar things, and there’s proven treatment that can help a lot. I would strongly advise anyone who is struggling and doesn’t know where to find help to visit the IOCDF. They have tremendous resources and will do everything they can to help connect you with the help you need.