I would like to make sure I note- that writing this has been one of the hardest posts for me to write. It’s also been hard to share this photo- well getting the courage to even take the photo was huge for me. It took me a long time to write it, and even longer to post it. This is part of me trying to be more honest about not just T1D, but my mental health. These are my experiences and symptoms of my OCD so please know that everyone is very different. If you need help, please reach out to a professional!
What does OCD look like?
Well for me-
It isn’t being organized or clean.
It’s hearing jokes about people who are OCD. Or saying “I’m so OCD” when really you just like to be neat. Or taking a quiz asking “How OCD are you?” When an online quiz can’t tell you or diagnose you. Hearing comments that it’s in my head- Why yes- it is in my head, but not made it up.
It’s constant glances at my CGM or checking my BG every 20 minutes when my BG is above 200. So it’s also not putting the CGM on my phone or on my pump until I’m ready because I know how I am. So then, it’s also hiding my CGM or giving it to friends so I don’t keep looking at it. It’s trying to work at this too.
It’s checking that things are off or locked- at least 4 times. And often texting myself a photo or texting a friend because I’m still not satisfied. (Especially a straightener, the oven, a candle, etc.)
It’s being late or giving myself an absurd amount of extra time because I had to check again. and again. and again. and again. Sometimes having to drive or walk all the way back to what I’m checking.
It’s that these compulsions to check get worse if I’m more stressed or my BG is elevated.
It’s having to clean an old pump site or cgm site at least 7 times with alcohol swabs.
It’s having a site rotation diagram.
It’s having your endo wanting your a1c higher not because of lows- but because your OCD is what drives your A1C.
It’s the endo telling you 14 basals are too much- because in your mind you HAVE to have that many because of what you see on the CGM or the idea of controlling every aspect of your life floats in your head. You have to fine tune every moment. Diabetes or not.
It’s getting really obsessed over something and throwing all of you into it (especially during stressful times). At some point-
- It was Pokemon cards when I was getting teased and bullied for almost anything. (I wanted to be teased for something I was interested in and not something I couldn’t change).
- It was Poly Pockets when I wanted to be normal and fit in.
- It was Pokemon Go when all of my health issues started along with going no contact with mom this past summer and fall (2016).
- It was playing the Dots games when I was miserable at one of my jobs.
- It was Pinterest during finals.
- It’s obsessing over my T1D management at extreme levels that aren’t sustainable which pushes me towards burnout.
- It’s solitaire when I want my mind to take a moment from going a million miles a second, and I’m not at home.
- It’s Netflix or a book so I can escape.
and these are just specific examples I remember or have used recently.
But a lot of those things are hard to see- unless you’re really paying attention to my actions. Unless I share these with you. I don’t want you to see it. I don’t want to tell you the compulsions or obsessions in my head.
But there is one specific bit that is visible for me- What OCD truly looks like for me- How it’s portrayed to the outside world.
It’s trying to make sure my hands are busy.
It’s picking at my skin because I need to flatten the imperfection. It’s also when I’m not even paying attention while getting more stressed or anxious, it’s something to “fiddle” with. So then it’s also using things to clean it or cover it up.
It’s getting self-conscious after the summer because of mosquito bites- when people keep pointing it out when they see it and tell me to stop scratching. Because there are way more things to pick at it since these bugs love me and due to my allergies.
It’s picking at bug bites and and acne scratches and former pump sites/CGM sites. It’s picking until I’m satisfied that it’s “smooth.” It’s picking more when I’m incredibly stressed.
It’s working on ways to not pick at my skin or letting myself get lost in things that help. It’s talking with my doctor to figure out ways to channel it through something else or a way to let it out that isn’t visible on my skin. It’s working at being truthful about the picking which is why I’m sharing this photo.
This is what OCD looks like for me. This is how OCD manifests itself in my life.
What OCD Looks Like (For Me)
Due to outreach and concern, I wrote a follow-up to this.
Editor’s Note: This was originally published in January 2017 and was updated for clarity and accuracy in August 2018.
Hey you! Yes, you!
If you enjoyed this post, please comment and share. I’d also appreciate your feedback.
and of course-don’t forget to keep up with “There’s More to the Story” via email! (Right sidebar towards the top).