It was June 27, 2018, and a Wednesday almost like any other. I had just gotten back from the gym, and I decided to sit down in front of my computer and watch The Joe Rogan Experience with dinner. He was talking to his guest about the new God of War game, and I was preparing to eat a new veggie burger I hadn’t had before.
I took the first bite, and my throat immediately went sore. I have pollen allergies, so I thought that the fresh ingredients in the burger must have triggered my allergies that, up until this point, had caused no serious problems for me. So I took another bite, and I took another bite, and I took another bite. My throat progressively felt funnier, as did my eyes. This had happened once before, and Benadryl made me feel better, so I figured that was the solution here too. I ran to the nearby supermarket and went to the medicine section.
My eyes and throat continued to feel worse, and I began sneezing uncontrollably as I picked up Children’s Benadryl—the first thing I could find. I paid some amount of money for it, went outside, and took it immediately. I then ran home wheezing through my mouth, as my nostrils clogged on the way home. I looked up anaphylaxis, wasn’t sure if I met the criteria, and then looked in the mirror. My eyes were puffed, blue, and barely open. Oh shit. I need to go to the emergency room immediately.
Instead of calling an ambulance like I should have done, I sprinted to the ER 10 minutes away because I thought running would cause adrenaline to go up which would have EpiPen-like effects and protect me from anaphylaxis. Do not do that. It’s not the same thing, and exercise makes allergic reactions way worse. If you’re having a serious reaction and don’t know if you should call 9-1-1, please call 9-1-1.
When I got to the emergency room, I looked so bad that they didn’t even give me the chance to sit down. While I didn’t have anaphylaxis, I did have an acute allergic reaction that needed attention. They gave me an IV with a steroid and Benadryl, and I got home recovered-but-still-puffy-eyed around 4 a.m.
I was on edge for days after that, wondering whether another allergic reaction was right around the corner. That Sunday night, I had just finished recording some podcasts with my friends when my stomach suddenly felt very weird. I thought I was having an allergic reaction to the ice cream I was eating even though I wasn’t, and I went home feeling extremely nauseated.
That night, I couldn’t sleep, and I spent the entire night hunched over a toilet for a vomit that never came. I went to the ER the following night because I felt an intense pain like my chest and stomach was on fire. Thinking I had GERD, they gave me omeprazole, sucralfate, and told me to see my primary care doctor.
The following month involved me taking stomach drugs for intense nausea and heartburn while getting scared every time I ate something, thinking it was going to kill me via allergic reaction. I had panic attack after panic attack, and in addition, I was afraid that I was either going to die or throw up in my sleep—or both. I still have no idea how that fear developed. I also developed an intense hypochondria during this time period. One day I thought I had appendicitis. The next, stomach cancer. The day after that, colon cancer. I told myself that each subsequent disease was going to be the one that got me. My sleep fell to roughly five hours a night.
I realized, thankfully, that my mental health was in an unsustainable state, and my solution was to try everything I could. I began meditating both on my own and with Headspace (a guided meditation app), I took on a serious exercise regiment, I studied CBT with When Panic Attacks by David Burns, and I read books by people like Claire Weekes. I buried myself in work, went on visits to see family members, used tried-and-true coping mechanisms—the works. I tried it all, and the more I tried, the worse it got.
I found out after a month or so via endoscopy that I didn’t have any stomach issues, and that said issues were likely a combination of anxiety and the drugs I was taking.
And so, my stomach felt better, but my anxiety marched on. In addition to random panic attacks and a fear of sleep, I started to get weirder issues, like songs stuck in my head for days at a time alongside a fear that I would never let go of them. This may have been my first sign of OCD. Before any of this happened, the only OCD-like trait I really had was that I checked the stove a handful of times before bed every night, but I lived with four other roommates so doing so didn’t feel unreasonable.
Everything continued until one Saturday sometime in July, when I wondered if I was going to forget to breathe. As a result, I began to get obsessed with my own breathing. In, out, in out, hundreds of times a day. It drove me absolutely nuts over the following weeks, and I thought I was never going to lose awareness over my breathing.
I went to Google and discovered something called “sensorimotor OCD” in some places, with some people posting that they were dealing with it for years, that it was horrible, that they couldn’t escape it, and that, in some cases, they were having dark, hopeless thoughts to the extent of suicidal ideation. I was convinced that this breathing obsession was something I was going to have to deal with for the rest of my life. That it was going to be the death of me.
My solution was to practice meditation until I perfected my practice and the scary thoughts and sensations would no longer hold power over me. It was my last hope to beat these demons.
Only, as I tried to meditate and practice more coping mechanisms, everything, once again, kept getting worse. My breathing obsession improved and I built up a tolerance, but it was replaced by obsessions with the blinking of myself and others, followed by weird intrusive thoughts and images, followed by an obsession with the feeling of the inside of my mouth, followed by an obsession with the feeling of air on my skin, followed by an obsession with movement, followed by obsessions with the colors red and white for no clear reason. I was scared I would never let go of these awarenesses, and that I would be trapped in this state forever and ever.
The one that broke the camel’s back was one in early September where I questioned whether anything outside my peripheral vision was real, and I questioned whether things existed or were just hallucinations. Google, my trusty “friend,” suggested I could have a delusion disorder, which is, so I read, one of the worst things in the mental health world. I didn’t actually believe my thoughts, mind you, but my mind kept coming up with intrusive thoughts questioning it all, and I listened. I would later learn that existential crises were totally common in the OCD world, but I didn’t know that at the time, so I went back to the ER for a mental health evaluation.
After a day of waiting in the emergency room, they thought I had a mood disorder like bipolar, and suggested that I go inpatient. I made the decision to because I knew I needed medicine and ran out of patience to see a psychiatrist long enough to get the right med balance. So I went from having no psychiatric experience (nor need for it) to, three months later, spending nine days at a psychiatric hospital.
At the hospital, the nurse practitioner there thought that the prednisone I had been given for my allergic reaction made me crazy, which it had been known to do to some people. Not bipolar. They gave me Zyprexa and Luvox, and let me go ultimately because I wasn’t actually suicidal and didn’t really belong there even though I didn’t feel better by any means.
After being discharged, I went to a partial hospitalization program where I went to five groups a day and met with a counselor once a week for about a month or so. Contrary to the initial bipolar and prednisone-based diagnoses, she said she thought I had OCD (which is what I originally thought I had before the obsessions got scarier). She also introduced me to The Happiness Trap by Russ Harris (an amazing, amazing book) as well as some initial ACT concepts.
But because the Luvox hadn’t fully kicked in yet and because I didn’t fully grasp the ACT skills, my obsessions continued to get worse in the PHP, and I thought I’d have to go back to the hospital. I even, at one point, developed a proper harm obsession (I was afraid that, almost like a werewolf, I would lose control, sleepwalk in my sleep, and harm myself despite having no desire nor history of such things). It was not good. I also found a psychiatrist at this time who I told my story to, and he said, I quote, that I was “f*cked” (thankfully I did not see him a second time, and my next prescriber neither said nor believed such things as far as I know).
And then, two things happened. The first is that, despite my life being a nightmare of obsessions and questioning reality, the Luvox started to kick in, and I began to slowly-but-surely retake control of my life. The second is that, on the official International OCD Foundation website, I tracked down a therapist that specializes in OCD treatment. I found a brilliant dude named Gabe who taught me all about how OCD works and how to properly utilize ACT skills. He explained that I had a rare OCD called hyperawareness OCD and that it was treatable through exposure work and ACT. I’m learning to drop the struggle and let my mind do what it’s going to do, all while living my life in the process.
And over the last month and a half, I’ve been recovering! It’s still early in the recovery part of my journey, but it’s happening! A few months ago, I was so paralyzed by constant fear and intrusive thoughts that I couldn’t even play a video game, let alone function properly in day-to-day life and enjoy the company of my wonderful partner, friends, and family. Today, while I am by no means fully recovered, I feel like I have a life again, and my prognosis gets just a little bit better every day.
I’m sharing my story with you so that, first and foremost, you know you’re not alone. If you’re someone whose OCD overcame them like a tsunami in a matter of months, know you’re not alone. If you’re someone who feels like they’re at life’s darkest moment after trying every coping mechanism they could find, know you’re not alone. If you’re someone with a rare form of OCD who feels like they’re not going to get better, know that you’re not alone and that it is possible to get better.
Here are the things that helped me a lot, that I wish I knew from the beginning, and that I want to communicate to other people with OCD so that I can potentially save some people from the worst of what I went through:
Read The Happiness Trap/Look Into ACT
ACT is an incredible form of therapy that, outside of medicine, became my primary way of dealing with my intrusive thoughts and obsessions. The therapy is a combination of acceptance strategies and mindfulness that asks one to, rather than struggle with thoughts and fight them, do nothing and let your mind do what it’s going to do. And, when you drop the struggle and move your efforts towards taking valued actions, you can create a life of meaning (and the thought-demons you’re struggling with hold far less power over you). The Happiness Trap is a wonderful book that goes over these principles in detail, and I highly, highly, highly recommend anyone with OCD to give it a shot. It’s been crucial to my recovery.
In addition to ACT, I recommend looking into the cognitive distortions piece of CBT, which tackles the irrational, unhelpful thought patterns we often find ourselves in. Learning about some of the more common pitfalls has been very helpful.
Stoicism is a school of philosophy that, among other things, teaches that we should accept the moment that presents itself and find meaning in what life has dealt us—to use our challenges in life to become greater human beings. Learning about philosophy might sound a little bit silly here, but it allowed me to find meaning in my suffering. It allowed me to say that if I can get through this, I can help other people get through it too someday. I recommend The Obstacle is The Way by Ryan Holiday and Meditations by Marcus Aurelius (Gregory Hays translation).
Straightforward enough! Training your body has a few key benefits. In addition to making you look better and feel better, exercise provides an outlet to get some of that pent-up energy out of your system. It also gives you something to work towards in a time when you really need to work towards something.
For me, meditation allows me to train my concentration and build up a greater tolerance for distress. If you want to get started, I recommend both 10% Happier books by Dan Harris. One is more of an autobiography, and the other is a guide for various meditations to try. You can also look into Headspace if you want to try guided meditation (which is easier). My one piece of advice is to not expect too much out of meditation once it starts to help you. It’ll take about a week or two to get any kind of benefit, and while the benefits are great over time, it won’t fix your problems. Learning how to grapple with your thoughts through exposure work and ACT will provide more immediate benefit, I believe. That said, meditation has proved to be an excellent tool in the tool kit for me.
If you need help, ask for it. You are worth it.
Enough said. The world needs you. You are valuable and deserve to recover.
Look Into an OCD Therapist
I didn’t think it would be such a game-changer for me, but it was. Look up OCD therapists and find one well-reviewed that you trust. For me, my therapists (hi Kate and Gabe!) were invaluable in teaching me the principles of ACT and proper exposure (ERP) work. If you have OCD, exposure work is going to likely be a necessity in feeling better (yep, even for less-common ones like the sensorimotor/hyperawareness OCD I have), and working with a professional can make things go a lot smoother than trying to use Google as your OCD coach. I recommend the IOCDF website as a first resource.
Please do not Google any symptoms from now on.
It will hurt you, in the end, every single time you Google symptoms unnecessarily—especially if you have hypochondria. See a doctor if you need to, but Google will, in all likelihood, make you think you have something you actually don’t.
It’s okay to take medication.
I come from the school of thought that you should take as little medication as necessary, but there are good medications out there that can change the way you think for the better and healthier. That said, only take medication prescribed to you by a prescriber, and when you get a prescriber (if you decide that’s a path you want to go down), find a good, compassionate one. Remember it can take time, however, to get one you click with. It took me a couple tries to find one that worked for me.
Hyperawareness/Sensorimotor OCD Tips
- For the breathing/blinking thing, I learned that I was breathing/blinking too forcefully when I was stuck on these obsessions, and once I calmed down some and breathed/blinked softer and slower, the OCD became a lot easier to manage.
- You don’t notice your breathing and blinking normally, and that place of awareness is possible to get back to once you learn how to let go of the struggle. ACT is helpful here; the less you feed the fear, the less it dominates your life.
- Like all OCD, awareness OCD is a fear and anxiety-related issue. Once the fear is no longer there, the OCD can’t survive (at least at its current scary state). It’s not a problem with breathing, or blinking, or what have you. It’s a fear judgment that has you looking at neutral things as something worth being afraid of.
- Practice exposure exercises with a trusted OCD therapist. I assumed that this OCD was too weird or rare to be treated this way, but it really is just like any other OCD.
Thanks for reading, and if you have any questions or need more tips, feel free to reach out to me on Twitter.
I believe in you!