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.
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There's More to the Story: a blog about LIFE, chronic illness, and Mental Health 
Thank you for sharing your OCD story and educating others. It takes courage to speak out about mental health! I hope this year is a really solid and positive one for you.
-Caroline/@carobanano
Caroline- thank you so much for reading! and for commenting. It really means a lot to me! I hope you have a solid and positive year as well!
-Mindy
Thank you so much for sharing this.
Wait, I should’ve said more but I was afraid to. But deep breath, here goes……
Thank you for sharing because I am guilty of saying I’m OCD about things. I now realize I’m not, really. And I should be more mindful that what I’m saying can hurt people. I’m so sorry for being so insensitive. I’m sorry if I’ve ever hurt your feelings. I promise I have learned from you.
Karen- you have NEVER hurt my feelings- I promise- I’ve never taken anything you’ve said that way from you. (and I’m quick to comment- so I would have said something).
I’m more specifically referring to an org that posted a photo about “how terrible it would be to have ocd if you already have t1d. glad we don’t have to worry about.” I didn’t want to specifically call them out because they took it down.
But please never worry about that- especially because you are such a wonderful, kind, etc person to look up to- especially in the DOC (and for me).
HUGS!!! ❤
My husband thinks that I should see someone. Someone who can diagnose what he thinks is OCD. What might actually be it. Because almost everything you’ve described in your post is what I have gone through, is what I go through. The throwing myself into something, all of myself. But especially the picking. I pick at my skin, at the bug bites. My legs look exactly the same with the dark spots. My face too. Because I get stressed, or anxious, or panicky and I start to pick at all of the tiny imperfections on my body. Maybe its not OCD, maybe it’s something else. In any case I thank you for sharing this post. For writing it all out and putting it out there because now when I look at the dark spots on my legs I don’t feel like its just me, being a “weirdo” picking at the bug bites or the scabs or the whatever. Does that even make sense. Haha. I overshare but I just wanted to let you know that you are amazing. Take care.
Mindy you are seriously one of the bravest people I know for sharing some of the things you do and bringing awareness to the challenges that a lot people face but go unseen. You’re a rockstar!! Thanks for sharing this part of yourself.
thank you!
Mindy you are seriously one of the bravest people I know!! Thank you for sharing this amd helping bring awareness to the things that many people go through but go unseen. You are a rockstar!!
Thank you!!!
Hey I loved you post because i have OCD too! I used to do the checking but I now do other things. So have faith that the checking may end one day, and I used to do the thing of sending pictures to myself of the stove! And i pick at my feet a lot but your post has made me realize that I need to work on stopping that! You’re so brave and keep going!
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Thank you for sharing your story. You are such a strong woman!
Thank you!
❤ I have struggled with Trichotillomania on and off and obsessive picking at skin/spots. I one spent 2 hours trying to gouge one hair and made such a mess of myself. You are very brave to have made this post.
Thank you for your story. I also struggle with dermatillomania. It is a coping mechanism, and makes me feel less anxious. At times, I don’t even realize I’m doing it. Sometimes I feel alone in it, thanks for making me feel less so
Thank you so much for stopping by and commenting/sharing! It really means a lot to me- and oh how I love the power of me too!
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