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Learning How To Live Again

When most children age, parents begin to leave them home alone. This is when my earliest memories of OCD began. While my parents were comfortable going out to do quick errands, I was home alone with the golden retriever, given I was an only child. I was a pretty average kid. I would indulge in a ton of writing, reading or video games. While snacking on goldfish or playing tug-a-war with my furry friend, my mind would wander — but not in the normal way.

Despite my parents going out to grab an extra gallon of milk or attend a parent-teacher meeting, I was convinced they were in some horrific car accident. I’d run to the phone multiple times in an hour, panic-calling my father’s cell phone in a crying fit to make sure they were still alive. Sometimes, my mom would be outside planting in the yard when the sound of an ambulance would suddenly pass, causing me to drop my snack on the ground and run to the window. I was always certain the ambulance was for her and not someone miles away.

My Experience & Reaction

I’d pace around the house, sweating, anxious, then usually would run to the bathroom feeling sick about the hypothetical trauma I just endured. It felt as if I was in some terrible 4-D movie theater. If we left on a family outing, I’d feel the need to run upstairs manically making sure no candles were lit, all things were unplugged, and no windows were open. My brain would always tell me, “What if you start a fire and your dog dies?” Or “What if you leave your windows open, and then your home is robbed and someone gets hurt?” This happened every moment of every day, and it was unbearable.

I could never relax and be in the moment, no matter how wonderful it was. I rubbed the skin off my hands from anxiety. I picked and clawed at my arms until blood ran down them and would call them mosquito bites. I often had to lay down and hide from all the extra noise because my mind couldn’t take it. The only antidote was a good fictional book, or soundtrack music, so I’d read about three a week and get headaches from the non-stop escapisms and loud headphones.

Searching for an Answer

My parents quickly noticed I had some unneeded levels of stress, so they took me to the doctor. The first one said I was just going through puberty. The second gave me a medication for my stomach acid saying my upset stomach (that was actually caused by high stress) was the thing bothering me and making me scared. The third said I was lying for attention. The fourth said it was my hormones. The fifth said, finally, “Oh, your daughter has anxiety.” This wasn’t unexpected for me as I was a premature baby, and easily overstimulated and emotional. Of course I would have anxiety! So they wrote me a prescription and sent me away. Problem solved, right?

But neither myself nor my parents were convinced. I could never relax and be in the moment, no matter how wonderful it was. Obviously, it didn’t work. I didn’t just have anxiety, I had Obsessive Compulsive Disorder. A subset disorder of anxiety that creates a weeded field of intrusive thoughts in one’s mind, but it would take over a decade to finally get someone to tell me that. So in the interim, I got worse.

I didn’t let that stop me from trying to see what the doctors couldn’t, so I would sneak into the “no” sections of the school library and open the few medical books we had. I read and I kept reading, clawing at the pages, desperate for an answer. Then, I would sneak into the computer labs to look up terminology I didn’t understand from said books. I was desperate to find a little line that could give me some hope I wasn’t slipping into manic insanity and that I was somewhere, even an outlier, on the normal spectrum.

Coexisting with OCD

Digging took a decade, but that digging eventually saved my life. I did, in fact, find the phrase that would help me get not just professional help but also the right kind. The phrase was “intrusive thoughts”. It’s been over two years now since receiving a Harm OCD diagnosis after a lifelong fight and recovering from a suicide attempt. I often have to re-teach myself the most basic elements of life, like how to eat and enjoy breakfast now that I’m not sick from anxiety in the morning anymore. I’m learning how to have enjoyable dinners despite all the triggers of “potential” allergic reactions and “dangerous” steak knives that have been born out of my Harm Obsessive Compulsive Disorder, another subtype.

I’m still trying to trust doctors after over twenty years of misdiagnoses and wrong medication. I’m working on letting people see my anxiety, crying and hand ringing, and accepting that I am not a burden. I’m letting the intrusive thoughts into my wonderful, intimate relationship with my significant other, and I bask in the fact that I am loved, and worthy of it. I used to spend so much energy trying to evict my chronic and lifelong issues such as OCD out of my space, but I found more joy once I became “friends” with them through coexisting.

How I Coexist with OCD

One of the definitions of “coexisting”, according to the Merriam-Webster dictionary is, “to live in peace with each other.” Coexisting comes with mutual understanding and acceptance — and that includes even the most violent, horrible thoughts. When you practice coexistence, you realize your value and potential don’t lie in how few or many thoughts you have (or how scary and irrational). You are a separate being, learning to share a space. And being at peace does not mean being in a season without questions. It is accepting that even in spite of not knowing all the answers, life goes on anyways.

The more you practice a state of coexistence, which in the first stages feels like pulling teeth, your Obsessive Compulsive Disorder becomes more of a nuance. Obviously, getting professional treatment is what ultimately taught me this – giving me valuable exercises that I still practice. While these were difficult, it pulled me into a world without as much anxiety, and I see everything differently now.

Grieving Myself

The second battle one has to face when getting a diagnosis of any sort is the grieving of themselves. Sometimes we grieve what we lost through the diagnosis. We take note of how drastically our minds or bodies change and the abilities or lifestyle we used to have. Sometimes we grieve the life we never had because of the condition(s) that we had to walk through. Currently, I am still learning how to grieve and find gratitude for my childhood. Sometimes I wonder what or who I could’ve been without this weight on my chest. However, I would walk through the shadows of all of those years again to discover what I know now, and make it my goal to pass that information to others.

This is why it is imperative to support funding and resources for mental health education; discussing and promoting the taboo terminology, uncomfortable questions, and realities to upcoming generations. The earlier we can pinpoint the type of struggle a child is facing, the earlier we can intervene and get them proper resources, professional help or support. If you’re currently on a path of trying to re-learn even life’s fundamentals after a diagnosis, I can promise you, it gets easier in time. I hope you someday feel empowered to share your newfound wisdom and understanding with others so we can begin to broaden mental health understanding together.

Written by Sarah Edwards (@setapart_company), TPCT Project Coordinator