On Stigma

I’ve been delayed in writing as much as I used to, and much of it is because I want to write about topics that still have a ton of stigma attached to them.

And I will write about them. I just started to get frustrated that instead of thinking of how to form posts to speak to an audience, I started to think about how to word them so that I wasn’t viewed in a negative light.

That’s messed up, that I have that mental roadblock to hurdle over. Why can’t I just freely write about what the child version of me went through, or how far down the rabbit hole my thoughts went during the most severe moments of my OCD? Stigma is holding me back from offering my experiences, which if even one person reads and finds useful, that would be a really great thing. And even when I know that I will eventually write it all out, stigma is hovering like a dark cloud.

I’ve always thought that a lot of stigma is generated by media. Also the way of thinking in black and white. But there’s a problem with thinking like that, because the human brain is not so black and white. Point A does not always lead to point B. One thing might not cause another, and there can be multiple reasons behind one action.

It’s why I often form sentences with, “for me” or “for myself”, because what one person goes through does not mirror another’s experiences. No one knows another person’s thoughts unless you are in that person’s head, thinking with them.

Introspection on The Past

I recently completed my interview for the OCD study and I’ve been digesting it since. It was completely exploratory and open, and inspired some topics for future posts I will do.

Nothing negative came of it, and it was almost as if I was expecting some connection between events that happened in my past. This could have happened because of me talking it all out, or the way the conversation flowed to certain conclusions.

And it’s relieving, to see what I’ve been through and what it’s caused as some sort of Venn diagram. Multiple circles of disorders overlaying each other.

One of my questions was related to eating disorders. I said I was never officially diagnosed with one, yet for most of my life I’ve had issues with keeping on weight. Most of this is caused by not feeling hunger as often as I should. The moment anxiety sneaks in my head, any hunger I felt disappears.

My sleeping disorder came up as well as PTSD from moments of my life. Attention and concentration issues throughout my life. Going to college at 29 because I finally felt I could deal with the problems of spelling, writing in order, and reading while absorbing information. How I always felt like a late bloomer in everything, finding it hard to cope with what society calls a “normal life”. How OCD grabs onto any of these things and has a field day with it, makes it worse, or causes it.

Realizing I touch-check more than I ever wanted to admit.

At one point I just blurted out that anxiety caused by OCD feels like a different type of anxiety all together, and was met with agreement.

Thanks to social media, finding out that a lot of people with OCD have some or all of the same issues as well. Realizing how relieved I feel knowing I’m not the only one…since OCD likes to tell you that you are.

OCD and Other Things

I’m a flighty person. I have trouble making decisions from future plans to where to eat. I’m starting to tie this together with my OCD.

It’s usually obsession based, these decisions that bounce around in my head. A twenty second conversation of “well maybe this, or maybe this, or maybe this instead” has a TON of obsessive thoughts fueling these words, and tends to annoy anyone who is on the receiving end of it. Pretty much any obsessive thought that seems to be a theme with me (fear of stuff I’ve posted about before), added with pricing, convenience, and cravings are blended together, equaling me changing my mind 5 different times in less than 5 minutes.

On another note, I had trouble concentrating in school growing up. I’d like to think I was fully ready to take on learning at 28 years old. When I went back to college at 29 I was prepared for it, and was often on the Dean’s List. This was with OCD, along with it’s annoyances and distractions. On top of my notes often being a confused train wreck and words that I hand wrote spelled weird. The second and first letter often being switched.

When I took two college classes at 18 I did really bad. I barely graduated high school because I was involved with a lot of theater, but also because I flat out didn’t understand how to learn in a classroom. Someone could show me how to write a paper and it was beyond me. Math was a nightmare. It’s like my brain took longer to get to the point where it could learn successfully.

I heard that OCD can be confused for ADHD/ADD. I can see this. And some people do have both. Even with all of this, I don’t think I have ADD as I can now ride through my distractions and be okay most of the time, completing tasks with everything going on in my head. It took a lot of time to learn how to do this. OCD itself can have enough power to make it seem like several disorders. It’s wild as hell.

OCD in Childhood

In a few days, I’ll have my interview for a study on OCD in children. I’m glad I started this blog because it is jogging some memories of the past. I’ll be able to provide more insight for those that want to improve the diagnosis process.

When I was growing up I had a ton of stuffed animals. I remember briefly thinking about getting one of those nets you hang in the corner to pile them on, mainly because some of my friends had them. Then I would think something along the lines of, “but then I would forget about the ones at the bottom of the pile”. Instead, I lined up my stuffed animals on a top shelf.

They were ordered from largest to smallest, right to left. It was difficult removing any of them to play with because that’s “where they went”.

My bed was made in a similar way. In front of the pillows I would have my current favorites arranged a certain way. Biggest to the back, smallest to the front. Not in a row but some arrangement that I saw as the way it should be. Every morning when I made my bed, this was a task that had to be done.

I was very much into thinking that every animal had an actual soul. That if one was on the shelf for a long time, it was probably sad. I stressed about this silently. I didn’t want them to feel forgotten but I also didn’t want to move them from their assigned spot on the shelf. I thought this was the normal way to think because I was so young.

And that’s the thing. As a child, it was beyond my comprehension to know my thoughts were not normal. I accepted it as “that’s how it is”. I don’t remember the exact moment or age when the thoughts became too much and caused a huge amount of anxiety. I wonder if it was a slow progression instead of like flipping a light switch. More on that later.

Favorite Distraction

I love how my brain becomes completely immersed in video games that I love to play.

There’s not many things that completely distract my OCD, but time can seriously fly when I’m having fun gaming.

I start to notice that even in the gaming world, I can be obsessive. Overwhelmed maybe? There’s a lot to do in free roaming games and I do get rather absorbed in trying to find every little thing.

I get stressed when I’ve abandoned a game for another one. I feel guilty. It’s weird. I have to learn to just keep having fun in the moment and let the petty stuff go.

Interpersonal Relationships and OCD

My boyfriend is one of the most understanding and patient people that I’ve ever known. I always feel unbelievably lucky to be with him. And because of his amazing ways, I always feel like the ball on the “ball and chain”. I know that most of this thinking is all in my head. These thoughts tend to sneak into my mind when I’m anxious.

It’s not feeling like a burden but not feeling like you are offering all that you could. Reality is that I am doing fine, and doing my best.

I always get confused as to which part is my OCD telling me things and which part might be a normal train of thought. I think any thought that is cast into the future is probably my OCD. “What if he gets tired of you and leaves you?” Just seems to have OCD written all over it when it goes on repeat like a record skipping.

I can’t tell if some of my friendships and relationships ended in the past because I didn’t have a grasp on my OCD. How much of my paranoia was a gut feeling and how much was my OCD?

Although, I think everything happens for a reason. If someone wants to be with you, they will be with you and vice versa. I learned to not force something that simply isn’t working, even in friendships.

When I was younger, I thought disclosing my OCD once in the beginning was enough to excuse my possible future weirdness. What I know now, is that it never hurts to bring it up again. Communication is extremely important, especially during bad spells.

“My brain won’t let this thought go, and I know it’s irrational.” This leads to my boyfriend talking me out of the thought. My best friend does something similar, I don’t even think she notices how much she helps me because it feels so natural.

This is an example of a good social support system working well for those with mental illness. It really helps a lot.

OCD Latches onto Comorbid Disorders

Fear of hurting others is a very common obsession with OCD. I’ve been seeing people coming out and talking about this more, so I figured I should tell my story of how this fear manifested in my OCD.

It feels like the more you try to be a good person, OCD tries to fight against that and send you unwanted worst case scenarios.

I talked about having setbacks in an earlier post. I had one of these in my mid-twenties. I was social, working, happy, and just living life day by day. It had been about three years since my diagnosis and I was recovering successfully. My OCD was manageable, and I was using the tools I had to squash most of it.

And then I watched Dexter. 

I never finished the show because the OCD part of my brain resurfaced, dramatically, and decided to throw intrusive thoughts rapid fire right at me. 

“You’re going to become him one day.”

Over and over and over and over.

This is stemming from my childhood. 

I had a nasty few years of conduct disorder existing with my OCD. (I will write more about this as this blog continues.)

Dexter brought it all back to the front of my thoughts, thanks to some of his flashback scenes as a kid. My OCD latched onto it, like a magnet, and I didn’t even realize that this new obsession was my mind playing a mean trick on me. It completely blindsided me, and I didn’t know enough about OCD back then to catch it.

Weeks later, I eventually broke down crying and in full panic mode. I was freaking out, thinking I was going to kill someone. The thoughts wouldn’t stop and they were deafening. So I called the VA crisis line. They said there’s some hidden room I can go to in the hospital; check in at the desk and they’ll talk to me in that tiny room. I went in the same day.

I used to view this appointment as embarrassing. But there I was, OCD completely at the wheel. I told the lady about my thoughts and then blurted out the stuff about my conduct disorder as a kid. Everything my OCD was telling me was pouring out of my mouth, as I’m crying and shaking. She was quickly taking notes, paused, and looked me in the eyes and said, “if you are what you say you are, you wouldn’t be here right now.” It was like she hit the brakes.

Naturally, recommended to talk to a therapist. To sum it up, these sessions were focused on my OCD. It didn’t take many appointments to have me back on track again. We talked a bit about my childhood, and I was given an additional diagnosis of mild PTSD. It was like a giant weight was lifted off my shoulders. I had more insight into my mind.

My friends and I did a fun Dexter themed photo shoot after that, and those thoughts disappeared for a long time.

Those intrusive thoughts pop up once in awhile. But now I catch them in their tracks, and smack them down to the ground.

15 years ago

Before I was diagnosed with OCD, I didn’t know what to make of my thoughts. I wasn’t able to see a therapist and even if I did, I wouldn’t have known what to tell them. I wasn’t feeling depressed but I wasn’t feeling okay either.

My thoughts were everywhere, scattered and focused at the same time. I didn’t feel like I found my identity because my mind was telling me all kinds of horrible things. I thought my mind was turning against me, and that’s how life was going to be from now on. So I started a journal.

I looked through it recently, and found that I was transcribing my intrusive thoughts. It’s like a different person wrote most of the entries.

Just scrawled with no context. Seems ironic.

I think if I would have had a name for it all, it would have been a lot easier. Labeling what mystery thing was in my brain made a huge difference when I was diagnosed. It formed a path for me.

I consider myself lucky that I caught it when I did. I hope that people suffering from some unknown find the strength to keep going and seek help.

The Adventures of Sleep Paralysis with OCD

About 3 years ago I was taking an afternoon nap. I woke up staring at my Periodic Table of Elements poster, and quickly realized I couldn’t move. I couldn’t even sweep my eyes back and forth. This moment probably lasted a few seconds, but it felt like an eternity. It felt suffocating. I eventually gasped myself officially awake and thought to myself, “fuck”.

Before that, I was wondering why I was having dreams that I couldn’t breathe. I was actually waking up gasping for breath, unaware of my paralysis. The funny thing about sleep paralysis is that you are breathing, but the pressure on your chest makes it feel like you’re not.

It happened about once a month. Waking up gasping.

Currently, it happens almost every night. Taking a nap guarantees an episode.

I tried a lot of things to help this, lifestyle changes, sleep aides, etc. I did more research and saw one of the causes: anxiety.

Anxiety’s favorite time to show its face is at night, when I’m falling asleep. There’s nothing to listen to but my own loud thoughts.

I’ve always had issues with REM sleep. When I was a kid, after the symptoms for OCD were showing, I was very active at sleep talking and walking. I would hold conversations in my sleep, make decisions if asked a question, and argue. I ran across the house in my sleep once, and dramatically threw open a bedroom door. According to freaked out friends, I’ve jumped off the top of a bunk bed with a superhero landing Deadpool would be proud of. Occasionally, I would set a booby trap to catch myself so I didn’t wander outside the bedroom. Currently, it’s rare for me to sleep walk and I’ve apparently traded it for sleep paralysis.

With OCD along for the ride, this is where being high O really sucks. My hallucinations during sleep paralysis are often focused on my obsessions. It’s like watching them in real time.

I wake up in REM to my apartment empty. I snap awake to see my furniture again.

I hallucinate the sound of my door opening, I rip myself out of paralysis and door check. 

I hallucinate a shadowy figure in my doorway and freak out enough to come out of paralysis. I walk around and check for a hiding intruder. 

I pretty much can’t rest when I’m supposed to be resting, and when I’m awake I’m often confronting my obsessions. I usually get enough sleep but it’s interrupted and an adventure of “what will I see this time”. It feels like I cross between two realities when I sleep, and it used to be fascinating until it became annoying. And then there’s the intrusive thoughts, ready to chime in right after I realize it was all a hallucination, “you’re losing your mind”.

At the moment, I’m trying to relax as much as I can before sleep. If I can’t fall asleep easily, my brain gets filled with ideas and memories to write about. I’m often writing stuff around 1-3 AM. 

This all might involve a future trip to a sleep clinic. It’s a work in progress.

Contamination

Stranger Danger

If a stranger coughs near me or in my path, I have a difficult time remaining in the immediate area. I will actually hold my breath until I leave; if it was socially acceptable, I would cup my nose and mouth. And if I can’t walk away, I just think about germs flying through the air and into my nose and mouth. But if someone I knew coughed near me, I wouldn’t be worried at all. This seems to be only a coughing thing and not a sneezing thing and the mystery remains.

“It’s sticky! But why?! Why sticky?”

If I accidentally touch a sticky surface I go right into red alert mode. If I know why it’s sticky it’s not so bad, but I will acknowledge verbally that it’s sticky and tell everyone with me that I touched something sticky. But if I don’t know what the mystery sticky stuff is, time stands still. Radio static blares in my head. The earth’s magnetic poles flip. I wash my hands and arms and want to change clothes and move out of the country.

Public Restrooms

I’m usually fine with using a public bathroom. The normal germy precautions take place, but if I accidentally bump my sleeved arm into the side of the stall I get all weird. I actually get mad at myself. My whole sleeve is now flashing red like my armor needs to be repaired. If it’s my bare arm, I include that in washing my hands after. I can easily forget about it as soon as I leave the restroom, but then it pops up in my head hours later at home that my sleeve touched something dirty. The sleeve has entered my home so the bathroom has entered my home. I change shirts.

The Essence of the Shoe

My boyfriend and I recently moved and I’ve adopted the ‘no shoes’ rule. I’ve always lived in places where shoes were a thing and I’ve never cared until now. Sometimes people come in wearing their shoes and I’m still coming to terms with it. If they’re not making eye contact, I’m staring at their shoes like they are giant bugs. When they leave, I think about where those shoes have been and wrestle with myself to not scrub the floor. I did that only once so far and I’m considering that a win. I know a lot of households have the ‘no shoes’ thing. I know a lot of people have this preference too. My thoughts immediately jump to extremes. “What if ALL they walked in was poop before coming here? Only poop and nothing but poop all the time?” If I let myself scrub the floor, I will do it every time. It will escalate to me thinking about it for days, even after scrubbing (did I get it all?). It could escalate further to me demanding shoes be left at the door, or not having guests.

This is why I’m grateful that I know myself. I know the potential of my OCD, because I’ve seen it at its worst. I use it as a learning experience and check myself when I’m able to spot signs of escalation.