Emily Stetzer, 27, and Lindsay Stetzer, 33, were both diagnosed with obsessive-compulsive disorder (OCD) and anxiety. But getting through those tough days together inspired the sisters to create a mindfulness bracelet company, Presently, to help people struggling with their mental health feel more grounded. Here, we spoke with the Stetzer sisters about navigating OCD, being there for each other, and the best ways to start talking about mental health with the people you love.
[This interview originally appeared in a July 2022 edition of the Wondermind Newsletter. Sign up here to never miss these candid conversations.]
WM: Can you talk a little about what being diagnosed with OCD was like for you?
Lindsay Stetzer: I started going to therapy and started taking medication in 2005 [when I was] diagnosed with OCD. For me, it was really scary prior to therapy because I didn't realize what I was going through was OCD. I thought that was just me [having panic attacks about] living in an alternative universe or me not being alive or my family not being alive. So, for me, that was a huge realization to then be told in therapy that that is a part of OCD. I think it was comforting, but it was also, obviously, scary because that fear in the moment could always come back.
Emily Stetzer: I was officially diagnosed in 2016. It was right after college, so before that, I just thought I had a ton of anxiety, and I was just kind of going to therapy to finally get some relief from that anxiety. This was the first time I’d been to therapy, and at the end of the session, the first or the second session, she was like, "You actually have OCD." And so that was very surprising to me because Lindsay was diagnosed years before, and we didn't really suspect it because we didn't have the same obsessions or fears. My compulsions were more mental and some of hers were more noticeable. So it was definitely a surprise, but it was also a relief because, like Lindsay was saying, the thoughts that you have, there's a reason behind it.
The nature of my OCD was based around relationships. It was revolving around more everyday occurrences, as opposed to Lindsay, where it's a little bit more other-universe kind of thoughts.
WM: Do you think the fact that you were both diagnosed with OCD and anxiety helped you understand each other more?
ES: Yeah, definitely. I think for me, I got home and I was like, "Oh Lindsay, I have OCD. Now we can share our obsessions and tools." And because our parents were familiar with it and had already had years of figuring out what Lindsay was going through, I almost felt like I had a parachute in a way.
LS: So as you were asking the question, I was thinking what I was gonna say, and for me when I was going through everything, I'm starting to get emotional, but my mom was someone that I'm so afraid to lose because she understood everything and she was the one that helped me through everything. But now having Emily share similar anxieties and OCD stuff, she's like another outlet, another resource, which is really nice.
WM: What is one main thing about OCD that you think people get wrong?
ES: There’s a lot of "sorry, I'm so OCD about that" either in reference to wanting to be clean or just wanting something a specific way or being anal about something. It's so frustrating because OCD is not about wanting to be tidy or wanting to be clean. That doesn’t necessarily mean you have OCD.
LS: That’s a huge one that Emily just mentioned, but I think also the term “being obsessed with something.” Of course you can be “obsessed” with something, but that doesn’t mean you have OCD. When you have mental obsessions because you have OCD, that’s a whole other [thing].
WM: How would you describe your relationship with OCD?
LS: An annoying friend ’cause it’s always there. She's always there, [and] she's always telling you stuff. And it's like, OK, I hear you. I hear what you're telling me. I understand what I should be concerned about, but I'm only going to take on the things that I think are relevant in the situation and check the facts and all that. So, she can come on a trip with me, but I'm also just gonna leave her in the room sometimes because it's too much.
ES: Tough love. It's like you're being tough on yourself. You have to accept that you have this OCD, but you have to be tough and willing to do the work so that you don't let it take over your life.
WM: What gets you through your worst days?
LS: What helps me get through a hard day is honestly remembering the time when [my OCD] was so extreme for me and the thoughts were so intrusive and so scary. Anytime I'm stuck in a "what do I do?” [or] “what if” situation or I'm anxious about [something], I always go back to the first time I had this fear, this existential OCD, of just not knowing if I was alive or dead. I’m always reminded that: OK, that was the hardest. I know I can do this, and I know I can take on this new exposure for that day, or this new thought, and be OK. I'll survive and get through it.
WM: What message do you want to bring to the world with Presently?
ES: Just like starting a business, managing anxiety is not that scary. I mean, it is, but there are ways to manage it. There are ways to get it under control where it's not taking over your life. Because there have been times before therapy, before really talking about it out loud, that I just felt like, I'm gonna be anxious forever. There's no way to manage this. And it just adds to that panic and having anxiety about having anxiety, essentially. There are ways to manage it and there are tools you can learn. And it's OK that you have anxiety.
LS: For me, it's the importance of knowing that you're not alone and that there are so many other people that are going through something very similar. And if it's not similar, there are people that are understanding of it.
WM: Presently's bracelets feature phrases inspired by cognitive behavioral therapy. What's your favorite?
ES: Mine is “my thoughts are passing clouds.” [It] was a phrase that I learned from Lindsay actually before going to therapy, which she learned in therapy, but then [my therapist] explained and reinforced the idea that someone with OCD, they’re going to have these intrusive thoughts and it’s inevitable and you can’t really stop them. But what you can do is observe them in a different way and look at them as an outside observer as opposed to identifying yourself with them and being like, "I am having this thought, me, as a person, so that must mean something about me."
LS: Mine would be “embrace uncertainty” because nothing in life is certain. And although it may seem that there is certainty in things that you do, at the end of the day, there is no certainty. So accepting that and understanding that and not being so scared about the uncertainty of little things, I think, allows you to live life to the fullest.
WM: What advice do you have for someone deciding whether or not they should talk about their mental health?
ES: First of all, the fact that you wanna share it with someone is an amazing first step. And then getting over that hump and actually saying it out loud is the most scary feeling, but it's also the most rewarding. It's important to accept uncertainty because it's true that you won't know how that other person will react. But you have to be willing to take that risk to be on the road to recovery because even if it's a family member or it's a therapist, opening that door for connection is, again, super rewarding. And even if that person doesn't react the way you want [them] to, that information is helpful, and just opening that dialogue is super important.
WM: What would you say to people on the receiving end of those convos?
LS: Think about it as if you were sharing your story to someone else. How would you want to be listened to and understood in that moment? Listen to them, and when they’re ready to share, they can share. And if they’re not ready to share, I wouldn’t push it.
This interview has been edited and condensed for length and clarity.
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