Posts tagged ‘disabilities do not define people’

16 June, 2011

OCD and the Well-Meaners

So yesterday, I posted about undertaking what we’ll call a “summer cleaning” project.

I talked about some of my more endearing cleaning eccentricities. I did so while generally chuckling at myself, albeit, while trying not to look at the giant pile of stuff on my living room floor. Because, let’s face it, nobody likes to look at a giant pile of stuff on his or her living room floor.

And then, something strange happened.

I got pelted by well-meaners. I say that gratefully, but also, with frustration. Make no mistake— I know how lucky I am to have a support system so ready to pounce upon any indication of OCD. As a facilitator, I see people who have no support and I’m sad for them, because I have people who are more than willing to beat me over the head with my all-powerful broom if that’s what I need from them. And sometimes, I do.

Sstill, by the time that I got my fourth message of concern, I was annoyed. I may have told my best friend that she was pissing me off and needed to leave me the frak alone. Without the sci-fi cursing.


Because even though my friends meant well, I didn’t actually need help. And though I said this in what I thought was a perfectly rational way, nobody believed me. They all meant well, and they all thought they were doing me a favor by trying to put at stop to my compulsive behaviors, but all they accomplished was to make me feel invalidated. As if, despite five years of my own treatment, having read every book I could get my hands on, my position facilitating, my work with OCD TEXAS, and the fact that I am the go-to person for peer support here — despite everything — I was suddenly somehow incapable of determining when I was being overly obsessive.

I am lucky. Two or three years ago, that thought would have terrified me. What if I don’t know when I’m being obsessive? Doesn’t that mean I’m crazy? I can still hear the Badger tossing those thoughts at me, but they don’t scare me now. I know better, but I remember what it was like then. When shaking the delicate sense of understanding and control I had over my OCD was enough to send me into a loop.

Here’s the thing.

If you have OCD, chances are, you’ve spent some time dealing with a well-meaner. It might be a one-time occurrence or an ongoing issue. It might be a person who is usually so spot on that you’d give him or her an honorary OCD status (you know who you are) or it might be someone who is so ill-informed that he or she just doesn’t know any better.

And while we’re being honest here, if you’re a support person, you’re GOING to fall into this category at some point. I certainly have. I’ve made assumptions and said and done things that I thought were good, but ended up being hurtful. I’ve made choices that might not always have been the right ones. Do I force an exposure on someone who doesn’t seem ready or do I capitulate to the obsession again? Nine times out of ten I will pick exposure.  Sometimes it works. Sometimes it blows up in my face.

So I want to be very clear here when I say that I completely understand from BOTH sides. Regardless of my frustration tonight, I get it. You make the decision you think is the best one at the time, because sometimes dealing with obsessions and compulsions is time-sensitive. You get in early enough, you can stop it from becoming a meltdown. Seeing that there might be a problem and trying to do something about it is what makes you a good support person, because it shows that you care enough pay attention.

But. Big but. There are a few things that should always be remembered.

1. Make No Assumptions. 

Not everything in the life of a person with OCD is necessarily OCD related. I, for example, actually enjoy organizing. In the way that some people like to garden. I enjoy having order in my world.

Note that I did not say “I need to have order in my world to prevent car crashes.” I’ve been there too. But the thing about OCD is that it tends to take good traits and magnify them into problems. Compassionate people worry endlessly that they’ve hurt others. Imaginative people create scenes in their head. And organized people may organize compulsively.

I cleaned yesterday. I also watched about six episodes of Bones, ordered a pizza, went to Wal-Mart, chatted online with several friends, listened to a dozen Grammar Girl podcasts, researched iPhones, and blogged. I also had fun. If you assume that cleaning means I’m scrubbing my floor with a toothbrush because my world will end if I don’t… what that says is that you don’t trust that I’ll recognize my symptoms.

2. Just because something looks like OCD doesn’t mean that it is. I wash my hands about every five minutes when I’m cooking. I do it because it’s just how I prefer it. It prevents cross-contamination. And if I go six minutes instead of five, my world doesn’t end. I also like systems and schedules. And I like to organize. Yes, that sometimes means I dump everything out and start from scratch. It means that my closet is very pretty when it’s clean. It means that I like things in a certain way.

And THAT is okay. Who isn’t particular about something or another? Maybe it’s the temperature of your food. If you food isn’t at the perfect temperature, you deem it unacceptable. That doesn’t mean you have OCD. It means you want things the way you want them. Maybe you don’t let people wear shoes in your house. Maybe you have a DVD organization system that would put mine to shame. (Wouldn’t take much.) The point is that it’s okay for you to be particular, and it is equally okay for me to be particular, so long as I’m not doing it out of anxiety.

3. Trust the person with OCD. My best friend absolutely refuses to believe me when I say I’m fine. Even if I am perfectly fine. Because I tend to have a certain tone about me and throw that word, fine, out there when I’m NOT fine as well, this is understandable, but also annoying as hell. It becomes a bit of a catch-22. Either I tell you I’m fine and you don’t believe me because I’m using the word you’ve deemed ‘not fine,’ or I tell you I’m not fine and you do believe me.

Then there’s the third option. The one that I hate the most. The one where I have to defend my actions and CONVINCE someone that I’m not being obsessive-compulsive. I could do that, of course, but why should I? After all, I am more equipped to know what’s going on in my head than anyone else. Even my therapist can’t read my mind, and I pay her.

We know when we’re anxious. We also know when we’re being irrational. It’s the beauty of OCD. We completely understand that our thoughts are crazy, thus, we aren’t crazy. By that same token, we are equally capable of telling when our thoughts are perfectly happy.

It is absolutely true, of course, that we won’t always admit to being obsessive or anxious. But ultimately, you have to trust the person with OCD. Here’s why: If you’ve asked three times and they’re still saying, ‘nope, I’m good, thanks,” then either your friend/spouse/relative is really okay, and you’re pushing OCD when it isn’t there, or your friend/spouse/relative IS being obsessive, but isn’t ready to deal with it.

We’re stubborn as all get out. You can talk all day at a person who doesn’t want to hear you and it won’t do any good.

4. Give credit for past experience. My friends with OCD… I know they know what to do. I also know that they’ll call me if they need help. And I try never to assume that they’ll need help from me unless they ask or it is blatantly obvious. I mean, if my dear friend Armando is making his hands BLEED in the sink, it might be time to step in and say, “Hey, Armando, what’s going on there?” If someone is new to treatment and exposures, I’m more ready to jump in and point things out, if I know in advance that it’s welcome. But if Franz, who has been working on his OCD for 6 years, starts folding his napkin into little squares in front of me, I’m not going to say, “Hey, Franz, you shouldn’t fold that napkin. Why don’t you try leaving it like it is,” unless Franz has asked me for help with his napkin folding compulsion.

The BEST thing that you can say, if you think one of your friends with OCD is having a problem is this: I know you know how to manage your OCD. If you’re having a problem and you need help, I’m here.

5. Be nice.  This one isn’t for the well-meaners. This one is for me. For the rest of us with OCD who have been driven to frustration and said things we regretted. Remember: you know what’s going on in your head. Your friends and family don’t. If you’ve made it clear that you appreciate help, you can’t expect people to sit in silence when they think you might need it.

Get angry. Write a blog post. Walk away from the conversation.

But never forget that your support people are precious, that they do an awful lot of good, that you love them, and that they mean well.

At the end of the day, it’s all anyone can ask for.


P.S. I will be cleaning today too. But only because I want to. If any of you get the urge to clean, please feel free to join me. I have enough laundry to last me weeks. And I’m doing it because I want clean clothes. That is all.