This is my third post on OCD. I also posted on OCD and Dark Thoughts and OCD and Cutting.
Agoraphobia is defined as anxiety in situations where an environment is perceived as being uncomfortable or dangerous. This may manifest itself as discomfort in wide-open spaces or in crowds. It was once believed to be a subset of panic disorders, but the latest diagnosis criteria (DSM -V) distinguishes it as being its own disorder because many with agoraphobia will go to great lengths to avoid those environments including refusing to leave their homes. (For more information, please see the Wikipedia article on the subject: Agoraphobia which is where I drew my definition from.)
Right in front of my door there is an invisible wall that separates me from the contamination outside.
Contamination is my strongest Obsessive Compulsive Disorder issue. Most people see me as a germaphobe…and if you see me handling food and the number of times I wash my hands, it makes sense. If you see me recoil from someone sneezing, the label would seem to fit, but it’s not accurate. If I can’t see contamination, it doesn’t bother me. If I don’t suspect contamination, I’m fine.
But the label contamination is more encompassing than just germs. I can’t have anything on my hands or they’re contaminated. I especially can’t be around someone visibly ill because body fluids are contaminating. I can’t stand the feeling of my own sweat when my OCD is bad–which is a vicious twist because running helps my OCD. My husband knows to let me initiate kissing because that’s some serious contamination–which is worth it–if my OCD isn’t too strong. I wear gloves when I handle certain foods: peanut butter, tuna fish, dough… If it can get under my nails, potentially, I wear gloves. If it can make my hands smell beyond one washing, I wear gloves. My OCD has progressed beyond me being able to handle raw meat so I don’t anymore. I used to be able to, but not anymore.
Whenever I’m making food…I wash my hands in between every step. For example, making blueberry muffins the other day:
–Wash hands to wash off juice of blueberries
Put flour in bowl
–Wash gritty flour off hands
Put sugar, salt, and baking powder in bowl
–Wash off hands
Break one egg
–Wash hands under hot water with anti-bacterial soap
Break second egg
–Wash hands under hot water with anti-bacterial soap
Mix milk, eggs, melted butter
–Wash off specks of liquid resulting from whisking
Combine liquids and dry ingredients
–Wash off batter from scraping sides of bowl
Add in blueberries
–Wash blueberry juice off my fingers
Then, comes putting the batter into the muffin cups…where I have to wash batter off my hands at least every other cup. I made 18 muffins. I washed my hands at least 18 times. The only time it was for germs was with the eggs. So, that would be the directions for that recipe–OCD style. Which is sort of funny, in my opinion.
My mom says I was like this as a child. I’d cry every time I got anything on my hands.
Contamination is also the reason I hate going to the doctor’s. My current doctor, when my OCD was really bad, would have them move me into a certain room the minute I arrived because the waiting room made me wig out. He still caught me one time wiping down his counter, but it really looked possibly maybe questionable. I saw some dust…in one corner…near the pamphlets. I like to think he was moving me into a room for my benefit, but the truth was probably that my twitchy paranoia likely freaked out everyone in the waiting room.
Contamination is internal too. It’s the reason why I’ve been struggling to go to church the last few weeks. I’ve been attempting to cut out an OCD med and my OCD is worse. So, the dark thoughts are stronger…they’re inside me…the voices are louder. I’m too contaminated to go in the chapel.
But it’s really, really contaminated outside. Not in my car. My car is mine, so it’s not contaminated. But the rest of the world is contaminated. If I stay inside, I can avoid becoming contaminated. If I stay inside a couple days…my car becomes contaminated too. If I stay inside longer, the wall of my door gets thicker and thicker. If I stay inside a week, I start finding reasons to not go outside. If my kids are sick with me, sometimes I keep them home from school an extra day or two just so I don’t have to go outside with them for any reason.
My kids are never contaminated…because they’re an extension of me. If they’re spewing body fluids of any kind–I just need to clean them off very quickly so they can go back to not being contaminated.
Crowds are very contaminated. Crowds where people might be sweating….that’s just foul.
If you’re reading this and thinking, “Wendy, this is somewhat ridiculous.”
It’s completely and utterly ridiculous. That is a qualifying significance to OCD…we know our behavior is ridiculous. Our paranoia is illogical. Our attempts to reconcile one thing in our life with repetitive behavior or avoidance make no sense. Most people with OCD have average or above average intelligence. We KNOW this is senseless, but the hell of OCD is that we know, and yet we wash our hands; we stay inside; we cling to certain numbers, certain behaviors. We have to, so we can sleep; so we can function; so we can fake normal the rest of the day.
If you think ANY of this behavior is logical and not over-the-top, you’re crazy. If you don’t wonder if you’re crazy, you’re crazy. My doctor tells me the very fact that I ask him if I’m crazy, proves that I’m not. The crazy ones don’t wonder if they’re crazy–they think they’re sane. I believe that’s the technical diagnostic criteria….
Yesterday, I went to the Renaissance Faire even though it was very contaminated because I want my kids not to be forced to live in my world with its invisible walls.
Today, I went to church because I believe that God wants me to be there–to walk through my invisible walls. I like to think that it means something more because it’s harder–and, today, it was very, very difficult.
These feelings on contamination are why I force myself to allow three non-family member hugs per year…because being kind shouldn’t equal contamination. Two years ago, I actually hugged someone having a bad day. It shocked both of us. It’d been years since I’d initiated a non-family member hug. Some years, I go over three hugs, and I force myself to tolerate it.
My husband drags me outside if he thinks my wall is getting too thick. I force myself outside for my kids so that the wall doesn’t get too thick. And I know there is no wall…and yet….it’s there. Stepping through it makes my heart beat faster, makes my skin itch, makes me long to just go inside and never leave. I hesitate, and then I push through because I don’t want to be that person, but I hesitate because I am that person.
Do you want to hear something crazy in the world of contradictions? I love to travel. I love to see new places, to soak in the culture, to eat different foods. I love it. I think that’s part of why I write. I can go anywhere, be anything, do anything, and I never have to break through that invisible wall.
When I tell new people I have OCD, do you know what their number one response is?
I doubt you’ll guess it….
Because it makes less sense than everything I’ve said above.
Their number one response is: So do I.
Typically, they follow it up with:
I like things clean.
I like things organized.
I have to have everything a certain way.
Do you know how I know they don’t have OCD?
Because most people who have OCD couldn’t put it so simply. It’s not just one little quirk. It’s a dozen things that slowly eat up the hours of your day and sometimes keep you inside just a bit more.
In addition to everything mentioned above, I also can’t go anywhere if I don’t know where I’ll park when I arrive. I have to know where I’m going to park, and it can’t mean parallel parking–I don’t parallel park. My husband has to figure out a parking plan for me or he knows to meet me somewhere so he can take over the parking thing. This summer, I’ve met my husband at the end of his hour-long commute home twice–just so he can turn around and drive me back to an event a mile from his work. He can’t anticipate the parking or I can’t handle the drive. Twice. Having to be in a crowd outside is asking a lot of me–and I generally can’t sleep the night before or the night after–add in parking and I’m a mess for days.
And it’s stupid. It’s ridiculous. It’s OCD. It’s agoraphobia.
Until your entire life revolves around what you can handle and what you can’t; until you’re beating up against some invisible wall or trying to force yourself not to enact behaviors that accomplish nothing; until your hands are raw from washing them or you’ve ruined a joint with a repetitive nervous tic–you don’t have OCD. Until then, you’re an individual–you’re unique–you’re quirky–and that is what makes you interesting, not what makes you labelled or dysfunctional. Until it traps you, you don’t have OCD.
Every time I post about OCD, it builds up my invisible wall. I feel open and exposed, and I want to stay inside a little more and hide. I sort of want to hurl too. But my daughter has OCD and deserves to live in a world where she doesn’t have to be ashamed of it, and I desperately want her invisible wall to not be as strong and present as mine. My son has agoraphobia. My husband drags him through his invisible wall sometimes too. My son hates it as much as I do…but then he has fun, and I have fun, and life wasn’t meant to be lived inside a cage built of invisible walls.
If you have agoraphobia, find something worth challenging it. When you look back at your past, you’ll remember the times you’ve left your comfort zone, not the trapped times. You’ll remember watching a rat circus, not the feeling of drowning you first experienced when you left the house. And it sucks–this invisible cage, and I’m sorry it sucks. I’m sorry it sucks for you and for me, but it’s only a cage if you see it as one…until you do, it’s still invisible. And anything is possible once you step outside your door, and life was meant to be lived.
I won’t lie and say I manage this all that well. Every day is a fight. Sometimes, I win–ish. Sometimes, I lose–hard. I can’t say I go outside as often as my husband would like…but he’s patient and he must sort of love me because he lets me stay inside to regroup and then drags me out so I don’t get too comfortable.
By the way, if you ever respond to someone telling you that they have OCD with “So do I” and you don’t really…just know that in their mind they’re Jedi force-choking you while still smiling, but they’ll probably forgive you. But, seriously, don’t do that.
If you have OCD or agoraphobia and you want to talk, I’m always on Twitter and, if you give me the heads-up, I can “follow” you and we can discuss it in DMs. Or you can contact me via the email address on my contact page. And now I’ll post this and go toss back some Zantac, Mtn Dew, and finish it off with some Oreos…because I’m healthy like that.
I am in awe at how brave you are. Opening yourself up and explaining all this to EVERYONE has got to be one of the hardest things to do. I totally get that you do it for your kids. We have ISSUES in our extended family and I struggle with explaining this to my kids in the most normal, nonchalant manner. I really just want to ignore it or run screaming from the room. I force myself to find a way to discuss it that won’t damage them in the future. I have to make it ok for them, you know? There are a lot of things I would never do for myself, but absolutely would do for my kids. Moms rock!
My husband has OCD. No, really! His is mostly scrupulousity with a few other tidbits thrown in for fun. It’s very difficult for him (and us!) to deal with at times. He says the scariest thing was telling me about it when we were dating. It was never a big deal for me, us not being together was never an option. We work together to get things done. We each bring strengths & weaknesses and we make a great, although sometimes crazy, team. I love to hear how you and your hubby do the same.
Keep up the good work my (virtual) friend!
That’s exactly how it is. I didn’t even tell anyone I had OCD other than my husband before B was diagnosed. Even my parents didn’t know. Partly because, as your husband said, it’s freaking scary telling people at first. You know they’re going to make assumptions…and I always felt like they’d weigh out whether I’m worth it.
Plus, I really didn’t know as much about OCD and every doctor I’d seen had treated me like I was either faking it or I was just a shade different from being depressed. I stopped telling doctors about the cutting because that got me on anti-depressants right away, and they’d immediately write a note in my file with their eyebrows raised.
When I found out the dark thoughts were related to OCD and I wasn’t just a horrible person, it became much easier to talk about it. And the minute I found that out, I started thinking about how much better my life could have been up to that point if someone had told me…and I didn’t want anyone to go through that if I could stop it.
Sometimes I wonder if bad things happen to good people so they can become more empathetic and be more willing to help the next person that comes along in shoes like theirs. I don’t know.
It’s nice having a good match in a spouse–having someone who loves you for your quirks and not despite them. And that goes both ways in our relationship even if it probably sounds a little lop-sided on my blog. (I swear I’m good in some ways…and not just for bringing the sacks of crazy to the relationship.) (I’m also adorable.) (Sometimes.) (With enough Mtn Dew tied-on.)
Wendy, again you amaze me. Your explanations about the various aspects of your OCD are so clear; you should write a book about it. No, seriously. It would be required reading in college psychology classes.
Speaking of, I’m thinking I’ll show your OCD-related posts to my DH who teaches beginning psychology at our local college. He *might* even want me to make copies for his classes. No promises, but would you mind if he did?
*Air Hug* (There, now you still have what’s left of your yearly allotment of non-relative hugs to give out.) 😉
I wouldn’t mind at all. If it can help anyone understand what living with OCD really is like–I’m always game for it. And I’m more than willing to answer questions if you have any also.
Oh and I already blew through all three hugs this year…and it’s only August. Le sigh. If I give four hugs, though, I generally end up giving five just to keep it odd…and prime. And by “give” I mean I don’t recoil in horror from a fifth one. I look fairly suffering and resistant, but I don’t do Munch’s Scream face.
Honestly, I can’t figure out how I end up getting hugged three times a year…. You’d think the horrified frozen stance would put people off. I can only assume I’m very lovable.
Such a brave post. I, too, am tired of people telling me, “Oh, we all have a little OCD.” My response is no, we don’t. Full-blown OCD is a living, breathing nightmare. (Mother of 18-year-old OCD veteran.)
I think the only reason they can say that is BECAUSE of the abbreviation because I can’t imagine someone saying, “We all have a little Obsessive Compulsive Disorder.” Disorder implies out-of-order—something OUT of the ordinary–basically something wrong. And, yet, I hear that all of the time too, and it totally makes my eyelid twitch.
OCD is not in the symptoms. You can have a headache and not have a brain tumor. OCD is in the hours of your life it sucks up and never gives back and the sum total of symptoms. OCD is in the fact that you’re a reluctant participant in the process. I don’t want to wash my hands twenty times in the course of making something. I don’t want to feel separate due to this contamination bubble.
Usually when someone says, “Me too. I like…..” I just want to shake them and say, “If you HAD OCD, you wouldn’t like things that way–you’d be forced to do things that way so you could move on with your life…so you could sleep at night. If you’re still making a choice, if NOT doing it is still an option…you don’t have OCD.”
I’m glad your 18-year old was recognized as having OCD already. Mine was so atypical in many ways from what I knew…I didn’t even know until I was in my 20s. I thought I was going insane. I have a severe fear of psych wards because I thought one day I’d wake up and be in one and that was my future. Knowing when I was younger would have been so much better…which is why I’m posting about this. I’m hoping someone out there recognizes their symptoms and realizes they’re not going insane. The fear that I was going insane and getting worse made me suicidal as a teen. I thought one day I wouldn’t be in control of my own mind…and OCD is all about control. Anyway, I’m glad your 18 year old is diagnosed and has so much support. It makes it easier.
This is an awesome post! Thank you so much for being so honest and opening up about something so difficult. I feel like I hear a lot of misinformation about OCD, and it was really nice to learn more about the reality of it from you. You are SO RAD and I bet the blueberry muffins were delicious. 😀
They were delicious. 🙂 In fact, they’re almost gone and I was thinking of making cookies. Cookies usually don’t take nearly as much hand-washing.
[…] OCD and Agoraphobia -Invisible Walls | Wendy Sparrow http://wendysparrow.com/Agoraphobia is defined as anxiety in situations where an environment is perceived as being uncomfortable or dangerous. This may manifest itself as discomfort in wide-open spaces or in crowds. It was once believed to be a … […]
Part of the problem with people’s perceptions is that even therapists can reinforce them. I one had a therapist ask if I thought I was OCD. I had to say, “No. I have crippling perfectionism. I don’t believe it is OCD in the clinical sense.” She nodded. But, see? She asked the question!
The heroine in my urban fantasy has severe agoraphobia brought on by a violent trauma. No psychiatrist or therapist has ever diagnosed me as agoraphobic, but I do go pretty far out of my to avoid a lot of situations, and enlist my husband’s help to manage the one’s I can’t avoid, like going to the kids’ schools.
And you’re so right about needing to get out occasionally. For me, I have a hard time letting people into my house, even kids. When we lived in VA, I had to work on this a lot, since our neighborhood had no fences and the kids roamed from yard to yard and house to house. I’d have to fight a panic attack just because I saw my neighbor’s child run by my dining room window. In our new place, in Texas, there are fences everywhere, which is awesome, but it also means I don’t have to challenge myself as often, so when something happens? My panic response is much, much worse.
Thank you so much for writing about these things. The more light we shine on them, the better for so many people.
My sister is coming over this Sunday. She warned me of this a month ago. She has to. And it’s been all I can think about since then at times. I have to clean my house this week in a serious way…and I can’t wait for it to be over. We will never be the cool kids’ house where kids can stop in to play–despite having a therapy room with swings and hammocks. We’ll never be those people. I can’t.
This guy who worked with shut-ins once commented on how great it is that I haven’t let my agoraphobia win–and I said, “What choice did I have? I have kids.” And I think that’s saving me…one miserable trip outside at a time.
I’m writing a story about an agoraphobe for NaNoWriMo. I’m pretty excited. Every so often we write what we know, right? 😉
My kids save me. Every day.
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