Mental Illness Looks Like: Katy, 33
Updated: Mar 11, 2020
Q: Do you struggle with mental illness? If so what?
I have OCD, and at times have struggled with depression.
Q: When did you first realize you struggled with mental illness?
Since I was a kid there were times I noticed my brain worked a little differently than those around me. I found thoughts getting “stuck” in my head and having an inability to just move on like everyone else seemed to be able to. Around the age of 12 is when I really began to struggle with intrusive thoughts about harm. I knew something wasn’t right but I was too afraid to seek help out of fear of what might happen to me. Unfortunately, at this time I had no idea what I was experiencing was a diagnosable mental illness, so for over a decade my OCD kind of went on a world tour of obsessions. It wasn’t until I was in graduate school in my early twenties that I was formally diagnosed with OCD, and finally was able to put a name to what I had experienced for much of my life.
Q: How were you diagnosed?
After somehow coming upon the IOCDF’s website and reading through the descriptions of sub-types of OCD, I realized that there may actually be a diagnosable mental illness for what I had been struggling with for years. I eventually reached out to a therapist who confirmed for me that I did indeed have OCD.
Q: What does OCD feel like for you? Describe your symptoms.
Regardless of the theme I am experiencing, when I’m really struggling with my OCD it always feels like this need to find certainty about whatever thoughts are running through my brain. At the core of it for me, it’s often knowing that I did the right thing or that I’m not a bad person regardless of the content of the thoughts. If I’m triggered it’s this incessant feeling inside to find this sense of peace about whatever intrusive thoughts my disorder is throwing at me whether that be through physical compulsions or mental rumination. It’s needing to solve something right away, and feeling like I can’t move on until I do. The more I go down the rabbit hole the more I feel out of control and overwhelmed and the cycle repeats.
Since I’ve been in treatment I now feel like I can describe my OCD somewhat differently. While there are still triggers that can take me out, now when I become triggered, I often can say to myself, “I see you OCD. Today you’re going to sit in the passenger seat and come along with me wherever I WANT to go.” I find myself choosing to still follow my values, and allowing that discomfort of the thoughts and uncertainty to just come along with me. It doesn’t have to inhibit me, it can just be there. It can be challenging and uncomfortable at first, but eventually the anxiety dissipates. It’s choosing to embrace my thoughts as thoughts and nothing else, no matter what feelings, urges, or emotions come with them.
Q: Is there a metaphor or an example you use to describe your mental illness?
I’m going to keep it light-hearted here and say...pretty much just the asshole that shows up to the party uninvited, tells you the thing you don’t want to hear that you feel like you have some moral obligation to act on, and doesn’t stop talking to you, all the while you wish you were enjoying the party like everyone else!
Q: Do you believe your illness has held you back in any way?
You know if you were to look at my life on paper…no. I went to college and got a degree. I played a division 1 sport. I went on to graduate school and got my masters. I got married. I had a kid. I’ve accomplished many of the things that may be expected of someone at my age. This is where I’ve often convinced myself my mental illness can’t be “that bad”. How could I possibly accomplish these things if I was suffering from pretty severe OCD?
The reality is that my OCD has held me back though. It’s held me back from reaching out and grabbing these moments of joy in my life. I spent over a decade of my life feeling like something was “wrong” with me. I had no idea I had OCD, so all that time I feared the reasons why my thoughts were getting stuck. I often was in the midst of these beautiful things happening in my life, but stuck in my own head struggling to be present for what was going on around me.
Q: What have you been able to achieve in spite of your mental struggles?
For so much of my life my mental illness really did control me. I still was able to accomplish many things as I noted above, but I think for me some of my greatest achievements have come in the past few years. Choosing to go to therapy, and committing myself to winning back my life from my OCD. Allowing self-compassion to be a part of my story. It’s a beautiful thing when you can choose to be kind to yourself in the moments you think you deserve it the least. Trying to identify values that are important to me and moving towards those regardless of what my OCD has to say. My blog has been really important to me and is something I’m really proud of (that’s hard to admit). As a child I was too terrified to ask for help, and now I’m finding myself sharing my story on different platforms publicly, and sometimes it just blows my mind how far I have come in the past few years.
My decision to have a child was also quite an achievement for me. There was a point in my life I wasn’t sure if I could handle being a mother with my OCD in tow. I was terrified, but I moved towards my values and worked incredibly hard to do the work necessary to fight my OCD in the process. My daughter has brought immense joy into my life and while being a parent challenges me, and my OCD makes it even harder some days, I am so grateful that I allowed myself the opportunity to be a mother. It has brought a certain type of love and joy into my life that can’t be put into words. It also taught me so much about who I am, and in many ways even helped me take on my OCD.
Q: Do you go to therapy?
After trying a couple therapists who didn’t specialize in OCD, I eventually connected with an OCD therapist. I have worked with this therapist for the past three and half years consistently with a focus on CBT, ERP, and mindfulness. It has changed my life, in ways I never could have imagined. I also recently added a DBT therapist to my treatment team, which has also been incredibly helpful for me.
Q: Do you take medication?
I do not currently take medication. I think medication can have a positive impact on many people with mental illness, when properly prescribed. I believe it is a personal decision that everyone has to weigh the positives and negatives of, but I don’t believe people should feel any shame for going that route.
Q: Do you do anything besides therapy to manage your symptoms?
I find meditation and mindfulness to be incredibly helpful. I try to be consistent with my meditation practice as much as I can by finding time to meditate daily. I think meditation can be challenging for people with OCD because you literally have to sit with your thoughts. Initially it can feel daunting and overwhelming, especially in the midst of a tough trigger, however, meditation is a continuous journey and if you approach it with patience and an open mind it can have an incredible impact.
I also think physical activity is incredibly helpful for me. When I have a routine of going to the gym I often find it’s easier for me to manage my symptoms. Writing has also played an influential role in me processing my mental health journey whether it be through writing I’ve done as part of the therapy process or writing I share on my blog, both have helped me work through the rollercoaster of emotions I’ve experienced. I’ve also found connecting with people who have brains that work like mine has been an important component in me feeling less alone in my struggles. I’ve been able to connect with a couple people who also struggle with OCD via social media, and it has been so helpful to have people who “get it” and are there to support you without providing reassurance.
Q: Any stereotypes you'd like to address regarding the disorder?
What took me so long to get help? It’s simple. I was too scared to ask. Talking to a professional about these thoughts was off the table as a child because I couldn’t stomach the potential consequences of what people would think. I couldn’t go to a therapist and be the “crazy” person. I couldn’t risk losing things important to me. I couldn’t risk being locked up if people didn’t understand I DIDN’T WANT to think this stuff. As a kid I didn’t know what I was fighting and there was no way that I could. No one talked about mental illness, and no one talked about OCD. Especially the scary harm kind. While my OCD has jumped from theme to theme throughout my life, it was the stigma and shame I felt around my harm OCD that I think really inhibited me from reaching out and getting the help I needed for so long. I think more than anything people need to begin to understand what having OCD can really entail. The torment and distress it can cause on one’s life. The endless ways it can present itself. I think there are a lot of stereotypes out there. I believe many people don’t mean bad when they use the term OCD inappropriately. It’s often lack of education, and I think we can start to tackle stigma and stereotypes the more society is educated as a whole around mental illness.
Q: Are you an advocate? If so, please tell us about your advocacy work.
My OCD is telling me to answer this question “No”. So I’m going to go ahead and embrace the exposure and say “Yes”. I have a blog “Navigating Uncertainty” which can be found at: https://navigatinguncertaintyblog.wordpress.com/. I also run the Instagram page @Navigating Uncertainty where I toss around some of my thoughts and/or general dislike for OCD.
Q: Any books, resources, or influencers that have helped you?
Is Fred in the Refrigerator?- Shala Nicely
Everyday Mindfulness for OCD-Jon Hershfield and Shala Nicely
Overcoming Harm OCD and When a Family Member has OCD-Jon Hershfield
International OCD Website: iocdf.org
10% happier, Headspace, Insight Timer
Q: What do you want people to know about mental illness?
Everyone has a story. Mental illness is a part of so many more people’s stories than you could ever imagine. It can ruin lives. It can take lives. So choose to be kind, always. On my hardest days, the smallest bit of kindness made a difference. You don’t have to understand what someone is going through, and so often it really is impossible, but you can choose to be kind. You can also choose to educate yourself. I think there is an ignorance to the role mental illness plays in our culture as a whole, and that ignorance needs to be replaced with education and understanding.
For those with mental illness, never let your diagnosis define you. Don’t let it dictate the type of person you are. You are braver than you think, and stronger than you could ever imagine. Choose to be kind to yourself in every moment. Most importantly, no matter how isolating it can feel, you are never alone.
Q: Use three words to describe your experience.
Terrifying, Courageous, Empowering