12 Comments

Thank you both for the sharing and insights. As I was reading it occurred to me that my periods of heightened procrastination could be a kind of relative of OCD.

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Thank you both so much for this. My son was diagnosed with OCD at 15 and it remains a struggle for him and us, although at 20 he has made lots of progress and is able to function (go to school, have a job, engage with friends…). The learning curve as to what OCD really is was wild. I also have used the IOCDF resources to learn and am so grateful to their and your efforts to make OCD less stigmatized and more recognized! If you haven’t seen the Instagram page of Allegra Kastans who goes by Obsessively Ever After, check her out. She is a therapist who is in recovery from OCD and no longer meets the criteria for active OCD. The information she shares is so helpful. Thank you again. ❤️

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Thank you for this 🙏

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Thank you for this! I could relate so much! I want to share as a PSA that OCD can occur as a secondary diagnosis with autism. Tony Attwood, in his Comprehensive Guide to Asperger Syndrome does a beautiful job outlining pathways to diagnosis of ASD, and is worth checking out for brilliant creative types who have always wondered why they feel weird/different and have other struggles not fully explained by the OCD diagnosis (including but not limited to sensory sensitivity, social struggles, executive function struggles ie starting or finishing projects, procrastination, etc). Sharing because this diagnosis was life changing and life affirming for me. Thank you for this deep dive into a struggle that is so often silent and private. The more open and public we are the more we can support and de-marginalize each other! And if de-marginalize isn‘t a thing, then I just made it one!

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Words are inadequate to express my gratitude to the two of you for offering this to us. I'm in my seventh decade and your writings lend me much-needed encouragement.

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Really, really generous of you both. Your conversation here sheds so much light on OCD and the resources list is priceless. Great thanks to both of you! Brain “stuff” is basically invisible without someone opening the door and allowing people to see what it is all about. ❤️

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Jesse - I am up early and just amplified this post on to my Facebook tribe saying:

"My inspiration for https://the-harold-b-gill-foundation-zao3m.zensmb.com - Jesse Paris Smith - I hope this amplification of her latest Substack post will help others as it helped me." - and it's so true. The Harold B Gill Foundation and its supporting Substack "Harrowings" is directly inspired by both your mother and you - but having lost my father just April 7, your memorialization of your own father is driving me to work hard on the Foundation just founded last month to memorialize my own. We are stewards of what we have and, in the end, as Margaret Atwood reminds us, we all become stories. Our ability to sit around the cyber-fire and tell each other stories goes back to that primal urge that helped our species survive its first few million years as we evolved into who we are now.

I believe we are a transition species - or perhaps it is as many futurists predict - thinking of Terrence McKenna - that we are approaching the end of history and that "Transcendental Object at the End of Time" - I don't know. I just know how things seem to me and it seems to me that Love is the answer with all that entails. More to come but thank you.

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Thank you Hillary and Jesse for sharing! I've been lucky not to have had any major issues with my mental health such as OCD, though I've had periods of depression in my life. I only recently experienced my first, I think, anxiety attack related to a physical health issue; I was diagnosed with a hiatel hernia earlier this year, which can cause symptoms that can feel like pressure around the heart or even what may seem like a heart attack. One day, my mind got caught in a loop that I was going to have such an attack even knowing about the hernia. Fortunately the anxiety passed, but it spurred me to change my diet and take better care of my physical health. So far so good.

Many of the aspects of OCD you both mentioned are common to my own experience (and I would think everyone), albeit to varying degrees: analysis paralysis, indecisiveness, intrusive thoughts, worrying that certain thoughts or decisions will lead to a result that is entirely unrelated, and so on. I began studying Buddhism in my mid-20s (including intensive meditation courses) and have found mindfulness practice and meditation helpful in achieving a general equilibrium (or equanimity), but challenges will always arise--fuel for practice, my teachers would say. Meditation is not a panacea, however, and can have its own pitfalls. As a measure, the equanimity afforded by mindfulness (or any number of practices and therapies) is a good destination to work towards.

I appreciate having the opportunity to learn so much about OCD from you both. A very good friend of mine (one of the best guitar players I've ever had the pleasure to make music with) has been diagnosed OCD, so for his sake and others, sharing this knowledge can only be for the greater good. I wish all good speed for this knowledge and information to reach those who may need it and success in all your endeavors!

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Thank you for this extremely thought provoking post. I had my own battle with OCD type behavior which lasted for decades. In my case it came in partnership with Anorexia, which I suffered from from the age 13 to my early 40's in varying degrees.

Interestingly enough, many studies have revealed that those with eating disorders have statistically higher rates of OCD (11-69%). To go a little further a study by Kaye et all found that 64% of individuals with eating disorders possess at least one anxiety disorder and 41% of those have OCD in particular.

Anyway, stats aside I had so many rituals during that time of my life. The worst being from around 13-25. Part of it stemmed from my less than happy home life with my parents divorcing and my father overstaying his welcome for over a year ( I write about that phase in my own Substack, 'Misfit'). When my father left for work and left in the evening to visit his girlfriend my self-appointed job was to erase all trace of him. The kitchen was my target area and EVERYTHING from surfaces to door handles would be scrubbed twice daily. That whole cleaning thing stayed with me long after that phase of my life had ended. In fact I could not leave my apt every day without cleaning it thoroughly. If I had no time, I would be guilt ridden and do it on my return home. I was the ONLY one living there!

So these would be my rituals, although counting things and obsessively checking that appliances were turned off and doors were locked was another one.

Of course mealtimes were also ritualistic and had to be at a specific time each day. Any delay would cause overwhelming anxiety.

So that is some of my story. I love that you both shared yours so openly. It is so misunderstood as a condition (for want of a better word) with people thinking all you have to do is snap out of it.

I am glad those days are finally behind me - and have been for over 2 decades - but I remember everything about them so very well.

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Hi Lee! Thanks for sharing. I'm glad those times are behind you and that you can share your own story so openly as well. Both OCD and the different eating disorders are challenges that I've not had to deal with personally but have known or know people that have. Knowing how to be supportive can be its own challenge, so having more knowledge and understanding is helpful for those of us who want to be that support. Take care!

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Thank you Brent. I felt it might be a bit wordy and oversharing . It's only now that I can separate myself that I can see how it shadowed so much of my adult life.

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It can be a fine line, I suppose, between sharing and oversharing, but your story is certainly appropriate here and this seems like a space in which you don't need to worry too much about crafting too fine a piece. It can be helpful just to get things out sometimes, too.

I tend to believe that we are happiest and most at peace with ourselves when we no longer have to carry around our secrets or our suffering on our own. How we share, of course, is an important consideration, nor is it to say that we should just open up the doors and let everything out. Some things take time and/or require a certain amount of processing or guidance before they can be shared in a healthy way. I suppose it speaks to the idea of transforming suffering into grace (something I first heard Ram Dass talk about); to be able to share your own experience in this way is, I think, positive. Anyway, I'm pretty wordy myself! I also hope I'm not oversharing. :^)

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