30 Days of Mental Illness Awareness Challenge–Day 1

I found this challenge through a friend I made at the OCD conference and thought it would be a great way to kick off OCD Awareness Week. So for the next 30 days, I will post responses to this challenge from Marci, Mental Health, & More.

MIA challenge

Day 1: What is/are your mental illness(es)? Explain it a little.

I have obsessive-compulsive disorder and anxiety disorder. I have also struggled with depression, and my psychologist also suspects PTSD.

There are many facets to OCD. The areas I struggle with are contamination obsessions and compulsions, checking obsessions and compulsions, protective compulsions, some aggressive obsessions, some sexual obsessions, perfectionistic obsessions and compulsions, movement compulsions, and mental compulsions. Some of these I have struggled with since I was a child.

Contamination obsessions and compulsions have to do with things being perceived as dirty and my need to either avoid getting dirty or clean up a ton. There is a high degree of illogical fear in this. The fear is that if something or someone, including myself, is contaminated, something bad will result–I could get sick, I could get really sick and die, someone else could get really sick and die, a terrible disease could be contracted. I also sometimes felt suffocated by perceived filth. When I was at my worst, I had a panic attack and cried over touching items in the trash. I took two showers a day, for an hour each time. I washed my hands after touching almost anything, or sometimes just if I couldn’t shake the obsession that I possibly had touched something. Each time I washed, I would soap, rinse, repeat at a minimum of five times, at a max of ten to fifteen times. I would be in the bathroom washing at least fifteen times each day. If I couldn’t soap, I used hand sanitizer. I could easily go through one bottle of hand soap in a day. I had to sanitize everything. Phone fell on the floor? It had to be wiped with a sanitizing wipe–but not by me, by my husband. I couldn’t put on my own shoes for fear of the germs. Walking down the street made me feel so filthy I was sure I needed a shower. Looking at a dirty homeless person made me want a shower, or at least to wash my hands. Looking a trash can made me want to wash. I made my mom and husband wash in specific ways, and I had them do tasks I couldn’t handle. I would ask them for reassurance if I was afraid I touched something.

Checking obsessions and compulsions have to do with obsessing about whether something was done or said and completing an action numerous times to alleviate the concern. I might go out with friends and start worrying later that I said something appropriate, and I would ask a trusted friend who was present several times if I said that. Or I lock my car about ten times. Just to be sure. And even then, I’m still not sure.

Protective compulsions have to do with my need to do certain actions to prevent harm from coming to myself or others. This hasn’t interfered in my life too much, but when it has, it has caused me to worry incessantly about friends or family. Like when my mom used to drive home from a visit to me, which took an hour and a half, and I would spend that time obsessed with the idea that something bad would happen to her and that I should have just driven her myself and that I should do something so she wouldn’t have to drive. I made her call me upon arrival home, like she was my kid instead of the other way around.

Aggressive obsessions cause me to think about unwanted violent images, like those of me hurting myself or someone else. It can be as simple as me standing by the train and suddenly picturing myself putting my foot between the concrete and the moving train and picturing what would happen after (which gets pretty disgustingly graphic in my brain). This image replays in my brain, like a CD stuck on some note of a song. I try to shake it off, but that makes it come back stronger. That’s the difference between OCD and just having a gruesome thought. Many people might think about this, but they don’t keep thinking about it. My brain can’t stop; trying to stop makes it worse. It’s why I can’t watch movies that contain even the smallest bit of gore. My brain disregards all imagery but the gore and then randomly replays the gore in my mind at later times. None of this means I would ever actually hurt myself or someone in this way. It’s just an irrational fear.

Sexual obsessions don’t play a big part in my OCD, but they have affected me from time to time. I’m not yet comfortable going into specific detail about my own experiences with this. Generally, it involves having unwanted inappropriate sexual thoughts and obsessing over them.

Perfectionistic obsessions and compulsions are fairly self-explanatory–it’s the obsession that something needs to be perfect or that something wasn’t perfect and completing actions to undo or alleviate the concern. Sometimes the obsession prevents the person from even starting on a project. I always put off writing papers until the very last minute because I obsessed over figuring out the perfect thing to write about, and how to say it, and whether it would be as good as someone else’s. The worst thing was going to class and hearing other people’s projects after we’d all turned ours in. I would spend the next week or two until the grades came back obsessing over what I should have done instead or better. I couldn’t focus on friends or my husband or anything enjoyable–all I could think about was the mistakes I was sure I’d made. Then I’d get my paper back and have an A, and all that time would be wasted.

This is an area I struggle with most strongly. It permeates every area of my life. I used to be unable to invite people to my house unless it was perfect–clean and neat and everything in its place. If people came over when it was a mess, I was sure they were judging me and obsessed over it. I become obsessed with my clothes fitting perfectly–if I’m having a fat day, I’ve been known to try on twenty outfits then burst into tears and profess I won’t go out because I just know someone will notice the teeny tiny bit I’m unhappy with. This wastes up to two or three hours of time, making me late for so many fun things. And even if I did go out after, all I could think was that I looked awful and that I should diet and how everyone else looked good but me. Basically, if it’s something someone can be “perfect” at, I obsess about it. This can be a good thing in moderation, but at the level I used to struggle with it, it was a bad thing, resulting in multiple nervous breakdowns and an inability to ever be satisfied. I still remember my therapist asking at the beginning of our work, “Are you satisfied with anything you do?” I answered no. I knew then it was going to be my biggest battle. (Good news: I’m not as bad as I used to be with this. I’m loads better. Not completely better, but getting there.)

Movement compulsions basically have to do with me repeating an action to ensure I did it correctly. For example, I worry about my hands touching something dirty after I wash them. So I’ll retrace my steps up five or six times, repeating the exact action I think I just took, to ensure I didn’t actually touch anything.

Mental compulsions involves me mentally checking or retracing to ensure I didn’t do something incorrectly. I could make it into my living room after washing my hands and retracing steps, but then mentally I will think about the entire cycle again, repeatedly. This mental checking has kept me from knowing what the people around me were talking about. I’ve put on a good show that I’m present in the moment, but I’ve been in my mind, completely obsessed with remembering every detail. If my mental compulsions don’t satisfy me, I resort to a physical compulsion.

So that’s pretty much my OCD. Anxiety disorder feeds into all that; I’ve been known to have intense anxiety attacks when feeling out of control in a situation or when my OCD is really bothering me. I have dealt with depression and suspected PTSD due to some events in my early life, which also happened to push my OCD into overdrive. I knew I was depressed when I stopped wanting to do anything that mattered to me in favor of just shutting myself off from everything. I don’t completely understand the potential PTSD diagnosis, but I haven’t argued it either. I believe it’s possible, but I’m not yet at a place where I feel I can really think about what led to it or how to deal with it. This one’s really hard because society has a tendency to say, “Well, we all have bad things happen, but we’re not freaking out. What makes you so special? You don’t have it that bad, people have experienced worse than you, etc.” To which I say yes, some people have had it worse. And I am sorry for those people. But that doesn’t mean what I experienced shouldn’t have caused me pain. I wish we lived in a world where we could just accept that everybody hurts and let people hurt instead of saying they should just deal with it.

We all hurt. That’s okay. Let’s just all accept it, and maybe we can get better.

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ERP Hierarchy and Meeting the Challenge

In therapy, we’ve started working on my hierarchy. What this means is that we discuss the level of anxiety doing certain activities would cause me, using a numerical value between 1 and 100 on a scale called SUDS (subjective units of distress), and then we rank them from low to high. This determines which tasks I start exposing myself to first and each progressing week. I actually hate assigning numbers to these tasks; I’d rather just put them in an order from what I wouldn’t freak out about that much to what would cause me to start shaking with fear. That’s essentially what I’m doing, just with numbers added.

A key element in this treatment for OCD is exposing yourself to the thing that causes you anxiety and avoiding engaging in the response, which is your compulsion. There are many types of compulsions I struggle with that I must learn not to use. Among them are:

  • using my sanitizer after touching doorknobs, my shoes, cleaning, before eating, after eating, after petting my cat, after getting into bed, and so forth
  • washing my hands multiple times
  • avoidance of “dirty” tasks, such as taking out the trash, being in a messy kitchen, or doing the laundry
  • asking for reassurance, such as when I’ve given a presentation or have been in a stressful social situation

Coming up with the list of the tasks for the hierarchy is seriously hard work. When you spend every day living with OCD, may of the things you do become second nature, and it’s incredibly tough to separate what’s normal from what’s OCD. Just the other day, I accidentally checked to make sure I locked my door not because I felt anxiety but because it’s become such a habit. When you start treatment for OCD, you begin analyzing everything you do, and you have to stay vigilant because it’s so easy to fall back into the OCD trap.

So far, we’re taking it pretty easy with my hierarchy. In the first week, I tackled locking my front door myself. I could not let my husband do it (because that’s avoidance), I could not check it, and I had to touch the doorknob. I was successful in this task for the first week. Last week I slipped up one day and had an overwhelming amount of anxiety–I was convinced I had not locked the door. I tried to make myself walk away and made it downstairs before rushing back up to check the door. And of course it was locked. I was upset with myself for this moment of weakness, but I decided to not let it get to me. I’ll just have to be more vigilant and let go. The whole point is to feel the anxiety but let it subside naturally so that my mind readjusts and begins to understand that I don’t need to worry. Since that time, I’ve done better. The anxiety is lessening with this task each day. I almost feel normal when I lock the door now.

For the second week, we decided that it was essential for me to start conquering my use of sanitizer because it interferes with so many of the other tasks on my hierarchy. It’s impossible to conquer cooking and cleaning properly if I’m using sanitizer every few minutes. My use of sanitizer had been extreme. I kept a bottle by my bedside, a bottle in my hallway, and a bottle in my purse. There have been days when I went through half a bottle of sanitizer (the kind with the pump), and this is in addition to washing my hands with soap and water. I remember moments of being in bed and just continuing to use the sanitizer. I would get on the subway platform and use my sanitizer. I always sanitized before eating, after eating, after putting on shoes (if I actually put my shoes on myself), after petting my cat, after getting in the refrigerator, while grocery shopping, while clothes shopping, after changing clothes, after touching something I perceived as dirty, after seeing something I perceived as dirty, and the list goes on and on. My whole day revolved around using sanitizer. You can see why conquering this early was essential.

My therapist and I had a lengthy talk about the best way to implement this task. When you’re working on a hierarchy, you can break things down by specific situations or place a time limit on the activity, among other ways of going about it. We talked about specifying my use of sanitizer, but the fear was that I would find too much comfort in those times when I could sanitize, that I would basically look forward to that time and use it as a compulsion to rid myself of the anxiety that had built up, rather than living with the anxiety and letting it subside naturally. We then talked about specific time frames when I could not sanitize but decided it would have the same outcome. So we decided the best course of action was to go cold turkey. That meant throwing out all the sanitizer. She let me keep the small bottle in my purse in case of extreme emergencies when my anxiety level became way too high to be really working on my hierarchy properly, but other than that, there could be no sanitizer in my life.

I was very nervous about this. She reminded me that not only could I not use my sanitizer, I would have to engage with the things that made my hands dirty–petting my cat, touching my sheets, putting on my shoes, etc. No avoidance.

In the past, I’ve had vacation days when I couldn’t use sanitizer, and I lived through them. We thought I could do this based on this fact.

And I did it. As of today, I have been sanitizer free for one week. I have not used hand sanitizer once, in any situation.

I pet my cat then eat food–without washing my hands. I sat on a park bench and ate lunch–without sanitizing. I put my shoes on and get them out of their boxes in my hallway–without sanitizing. I shop–without sanitizing. I touch doorknobs and see dirty things, and I don’t sanitize.

When I told my therapist, she was elated. It was the happiest I’ve seen her since we started meeting. It’s amazing to know that I’ve made her proud, but it’s even better to know I’ve met the challenge. I’m actually not using sanitizer.

I’ve definitely felt anxiety at times from not using the sanitizer. There have been plenty of times when I’ve wanted to use it but haven’t. I didn’t know I could be this strong. It’s been tough to give myself credit, because I know I have so many other areas to tackle. But it’s important for me to recognize that this is quite an achievement. I mean, I can’t remember the last time I went an entire week without using hand sanitizer. This is a breakthrough for me. I’m still hesitant about cutting down my handwashing, but I’m slowly starting to believe I can do it. This is why he hierarchy approach works.

Other tasks I’ve done: submitting a paper to my teacher without checking it for errors before sending it and not looking at it again after submitting it to analyze it for errors. I struggled with this the first day, but since that time, I’ve discovered how freeing it is to let go of the perceived control over my grade. Maybe my paper will stink and I’ll get a B, or even a *gasp* B-. Life will go on. I’ve also started working on not asking my friends for reassurance in social situations and about school tasks. I actually didn’t ask my friend how I did on a presentation I had. Normally I ask a ton of questions to figure out if I did okay and ease my anxiety. I didn’t ask a thing. But I did ask about a social situation. I realized that’s a tougher one for me, and I’ll keep working on it. Life goes on, even if I act inappropriately, even if someone perceives me as mean or as a bitch or as a snob. Life goes on if I say all the wrong things. Life goes on if I’m not perfect. People will either like me or hate me, and I can’t control their opinions of me. This is hard to accept because I’ve always wanted to please everyone, but it’s getting easier every day.

I wonder if this will eventually help me eliminate my shyness. Maybe if I can stop worrying about saying the perfect thing, I’ll actually be able to converse with people I don’t know well. It’s the start of a whole new me.

And I have to say, I’m happier than I’ve been in a long time.