I fought back tears and growing panic as I said to my therapist, “ok so I know it’s a super low risk but my fear is that I will be one of those few people who gets that rare side effect and it will completely destroy my lungs and then I’ll never be able to run again.”
“Maybe you will be,” she said back to me.
Not “Oh Amelia, that won’t happen you have nothing to worry about.” Or “You will be fine I promise.” Those are the reassuring responses I had sought from a young age and gotten used to over my 40 years.
Instead, it was an acknowledgment that maybe things won’t go well. That yes, actually, maybe I could be one of the unlucky few. That perhaps things won’t be ok.
I was a month into thrice-weekly exposure and response prevention (ERP) therapy for obsessive-compulsive disorder and by now I had started to become accustomed to this refrain.
“Maybe you will…but you have no way of knowing that now, and the worry will not decide the consequences.”
I’ve spoken quite openly about my eating disorder and recovery, but have been more hushed around the original diagnosis that predated the ED: obsessive-compulsive disorder (OCD).1 There are a few reasons for that: (1) it’s luckily been pretty quiet for a few decades; (2) the eating disorder (which I firmly believe is entangled as a manifestation of it) was very loud and took center stage; and (3) for some reason, I find OCD more misunderstood and more shameful to speak about.2
“But you can’t have OCD,” family and friends would say, “look how messy you are!” That is true - my desk is littered with papers, my room is cluttered, and organizing has never been a priority for me (it’s organized in my own little way, ok?!), but what every person suffering from OCD would love for you to know is that being a “neat freak” is NOT what OCD is.
For some reason, eating disorders are easier for people to understand: they have been discussed so prominently over the past 30 years, and almost glorified in many ways. From the ‘90s “heroin chic” look or the association of being able to withhold food as virtuous or the “yeah well every woman has an issue with food” response, eating disorders are, sadly, socially acceptable.
But it’s much harder for people to understand that you suffer with a crippling fear that you might stab your cat with a knife on purpose, or that you wear a respirator into your garage because you are sure there are mice in there that will give you hantavirus, or that if you don’t do the exact 20 warm-up exercises in a precise order, you will absolutely get a stress fracture on that run.
Those things…well…those sound…absolutely fucking crazy to someone who doesn’t understand OCD.
I’d started to notice a re-emergence of health OCD symptoms about a year ago when I had a few legitimate health scares. But it was this past fall that the walls came crashing in around me and I found myself in a full-blown relapse to the point where I was unable to function for multiple days at a time. I was terrified something in my house was going to kill me so I wasn’t safe at home, but I was terrified things in the world were going to kill me, so I couldn’t leave. I had reached crippling paralysis. More than anything, I was frustrated and ashamed that it felt like my brain was overdrive betraying me and I couldn’t logic my way out of it.
So I reached out for help.
In many ways, eating disorder treatment was a form of exposure therapy: eat the thing that terrifies you, sit with it, learn that some unimaginable consequence didn’t happen, and do it again until it loses the power over you. But I had never done ERP specific for OCD before.
And what I found, for me, is that the exposure was important, but the most valuable part was learning to take away reassurances and to live in the uncertainty.
Because if you think about it, that’s really what life is: nothing is guaranteed. And OCD is desperately seeking certainty in an uncertain world.
Moreover, OCD tends to attack the things that you value most. For example, one of my themes of OCD was around illness or substances that would potentially hurt my lungs or my heart. It seemed wild to me, especially being a person who ran and crawled through filthy mud (and whatever could be in there) for so many years without a second thought. Why, now, would I be obsessive over germs and disease? It made no sense to logical me.
But it started to make sense why I assessed something that I love and value: being able to use my body and lungs and heart to run through the mountains. It made sense that fears would center around the potential to permanently lose that part of me. And it also made sense why it re-emerged at the time that it did: it was at a time when I had just lost two crucial aspects of my identity and two things that brought me so much joy.
While scary and intense, ERP works: after several months of very intense therapy, the brain has quieted and I feel back to baseline, equipped with tools and skills to keep it at bay.
And that means acknowledging the daily uncertainty of life. That, yes, one day I could get diagnosed with Stage 4 cancer as a result of my 20-year Diet Coke habit or use of tanning beds. And that worrying about that now is not going to have any effect on whether or not that actually happens: the only thing it does is suck the joy out of the here and now.
This is why I chose the word “maybe” as my theme for 2024. I’ve spent so much of my life trying desperately to control outcomes or have certainty of what my life will be like when I’m 80 years old, and it’s time to let that go.
Maybe it will all be ok.
Maybe it won’t.
And my job is to acknowledge that and flourish in the present.
For more, read here: https://ameliaboone.substack.com/p/when-anxiety-has-no-place-to-go
I will admit that this is one topic I am very nervous to address because of the stigma and lack of understanding around it - to a “normal” person, some of the things that go through the brain of a person with OCD sound absolutely ridiculous (and look, we know they are!). But hey, I was nervous the first time I talked about my eating disorder and that ended up ok, right?
Thank you for sharing your journey. My illness has dogged me my whole life. There is such a stigma around mental health that I never feel I can express my feelings. I’ve always admired your bravery and this just elevated that. “Maybe” we will be ok.
Thank you for sharing and for being vulnerable. I admire your willingness to expose something that affects many. I think maybe this will be your best year yet! Stay strong 💪