To say I’m slightly in disbelief and awed by the feedback, support, me too’s, etc. I received from my latest blog post about what OCD Looks Like for Me is an understatement. But really- woah- it wasn’t what I was expecting.

I wanted to follow-up- I wanted to make sure I didn’t just leave it in the air- I wanted to make sure I addressed some parts- what I’ve worked on and everything. (Specifically so no one really worries).

The text from the original post is italics- my follow-up bits are bold. If I mentioned it in the previous post, I’m using italics and bold-ing it. 

What does OCD look like?

 

Well for me- It’s the work I’m doing that you don’t always see, and that I rarely talk about- because I’m so focused on working on things- and it’s something I still feel is very personal for me.

It isn’t being organized or clean. (My stuff is allll over the place at home. But with my ADHD I do a lot to stay organized- I’ve learned what works for me. I am however not dirty- it’s “organized chaos.”)

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. I make attempts to educate and bring this up with people. 

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. I’m working with my endo and mental health provider to work on this. I have a goal to be ready for the Dexcom G6. I’ve improved- but I still have a ways to go. You can check out my posts about my relationship with my CGM as well as the follow-up post.

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). I try to keep a consistent schedule and use the same things each day so it’s a habit. I try not to be in a rush/give myself plenty of time so that being in a rush doesn’t intensify this. I also remind myself how far I’ve come- and if I’m more stressed, I tell myself that as well. 

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. Again- making sure I’m not in a rush and leaving some cushion time for this. 

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. I created the diagram so I wouldn’t worry about this. It gives me piece of mind that I’m rotating. 

It’s having your endo wanting your a1c higher not because of lows- but because your OCD is what drives your A1C. Again- working on this with my endo and mental health provider. 

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. At every appointment we go down on basal rates because I’ve usually gone up slightly again. Again- I try to remind myself about what is a reasonable amount. 

It’s getting really obsessed over something and throwing all of you into it (especially during stressful times). At some point- I don’t do a lot to combat this too much. Sometimes I need to throw myself into things. But I set alarms and make sure I’m aware of why. 

• 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.

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.

If I know I’m more stressed, and I have things to pick at- I try to make sure the skin is covered if I can. I try to keep my hands busy and use relaxation and yoga to work on this. I color, I make bracelets, I paint my nails to pick at the nail polish. My mental health provider and I are working on this. I have made improvements, but it’s really 2 steps forward one step back. My mental health provider and I are focusing on the core part of the whys- and not just to not do it- especially because I’ve come further in other aspects of my mental health. I’ve only had a diagnosis for about 2 years. I’ve only been on anxiety medication for about a year. So we’re working on the details and specifics. 

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.

I’m a work in progress, right?

 

OCD Looks Like a Work in Progress (For Me)

 

Editor’s Note: This was originally published in January 2017 and was updated for clarity and accuracy in August 2018.

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We’ll both be glad you did! -Mindy