So, this isn’t going to be about writing–not in so many words, but I’m really trying to help the world see OCD in a different light, and there isn’t a moment of my day that isn’t impacted by having OCD. There isn’t a word I write that isn’t influenced by my OCD. I will have books/novellas out eventually that will have OCD characters. OCD is a huge part of my life–a defining part of my character.
If you know me well at all, you know that I joke about my OCD and being crazy all the time. I have a pretty broad sense of humor, and it helps me cope. I have clinical, severe Obsessive Compulsive Disorder. I repress most of my symptoms and I hid it for 28 years up until my daughter was diagnosed with it, and, now, I’m open about it because I’m not ashamed that my brain just doesn’t run the way other people’s do. My daughter’s OCD seems fairly mild at this point, but I don’t want her to ever feel like she has to hide it from everyone.
I’m medicated for OCD which helps with some symptom control. Medication takes the edge off and keeps me able to function, but there’s just something a little pathetic about shooting just for “functional.” Unfortunately, therapy won’t work for me and most meds have horrific side effects. I try to control things with diet and exercise and that helps, but my reality will always be that if I’m under stress…I will most likely need to be medicated.
And now I’m going to say something that is probably very hard for anyone to say, but it’s a reality I’m working to accept: I’m a better person when I’m medicated.
End of story.
And it sucks, but there it is. The reason is that there is a common symptom of OCD that I’m going to “out” right now that even many people with OCD don’t recognize or acknowledge. One of the big symptoms of OCD is we have dark thoughts–thoughts that spring into our heads with no warning. Thoughts that terrify us because they make us wonder if we’re just one impulse away from being a monster. A common one is that if someone is too close to the edge of something…a street, the railing on a boat, a cliff…we have this moment where we think, “They should be more careful, I could push them right now…kill them right now…and….” which is then followed by such self-loathing that you don’t even want to be around you.
I wish that was it, but the thoughts take a lot of forms: inappropriate sexual thoughts, heretical religious thoughts (for those of us who are religious), violent thoughts, immoral thoughts…thoughts that you’d associate with the most sociopathic and evil members of society…and they drop into our brains as chemicals shift and images process…and we loathe ourselves.
I’ve said this on Twitter, and I’m repeating it with the profanity it deserves: People with OCD feel guilty every damn day.
It’s been decades since I’ve felt like I could enter a chapel and sometimes even a church even though I know that these thoughts are not who I am–that the space between thought and action is a wide gulf, but being in a chapel throws how I feel versus what I should feel into such sharp contrast that it’s easier for me to not be in there. (We usually sit in the foyer–and with my husband’s migraines and T’s issues with crowds and noises…it’s an easy choice.)
The thing about OCD…the thing that makes it different from insanity is that we realize this is crazy. I know those thoughts are crazy. I know any compulsions or behaviors will not “atone” or repair this part of me that feels broken. People with OCD know their behavior, their paranoia, their obsessions are over-the-top…and yet…we need to cope.
When I was younger, my coping mechanisms were a lot more self-destructive because I was completely out of control and desperate for help and also to hide that I needed help. Today, I’m a lot more sure that who I am is not who OCD sometimes implies I am, and I have an extremely supportive family. And the medication helps. I pay for it, though. The meds should disrupt my ability to obsess…and, thus, my memory. My memory is lousy at times. On the other hand, I’ve gone into the chapel at church about four times this year. I can go outside my house. I can be in crowds. I can function. There are other side effects–tons of other side effects, and I have to take meds three times a day, every day, without fail.
There’s a song that goes: “I’m not crazy, I’m just a little unwell….” and at 30% symptom control I’m standing on that line.
But, I’m not bringing this up so you all want to give me cyber hugs. I live a truly blessed life despite this, and my OCD isn’t always so negative. I swear I keep the rest of the world safe from killing themselves and my level of attention to detail and intuitiveness about others is what makes me an effective writer.
I’m bringing it up because someone needs to say that this is normal…for the abnormal…that those with OCD are not dark, even if you feel like it. If you suffer from this symptom, you are not a bad person. In fact, chances are that you are a very good person and that’s why you feel like such a bad person. I’m bringing it up because I had no idea that this was a symptom of OCD until I was in my 20s, and I’d already considered suicide a dozen times, and I’d already had a nervous breakdown. I’m bringing it up because I wish someone had told me.
I will never be normal, but I also don’t believe normal exists. I can’t imagine what it must be like to not have OCD…and sometimes I’m not even sure I’d want to be that person. OCD is what I am and who I am–even as it’s not either of those.
If you or someone you know has OCD, as you can see, I’m extremely open about it. I haven’t always been, but the world needs people to talk about this. If you have any questions, I’m totally okay with talking about it. I’m very familiar with common symptoms. I’ve tried many different interventions. If you need to talk, chances are, my insomnia is keeping me awake. (Another common sign of OCD.) Look for me on Twitter or send me an email at the address on my contact page.
If you have OCD, you deserve to be happy and have peace. Peace of mind isn’t just a tossed-off phrase if you’re coping with OCD, and I get that.
If you read through this, you deserve a cookie. *hands you a cookie* Don’t get crumbs everywhere and go wash up with good soap after you’re done.
*None of these posts on OCD can replicate or replace a visit to a health care professional and are my own personal experience and opinions. Please seek help if you feel you or someone you love needs it.*
As always, I appreciate your openness. I started following you on Twitter a while back and virtually instantly wanted to be your friend IRL. Your courage to put your struggles “out there” is admirable, and hopefully cathartic. Just keep being you, you’re awesome!
Thanks! Am I following you back on Twitter…hopefully? What’s your username? And I apologize if we tweet all the time and we’re as close as besties. I have kind of a funky memory for names, but a fairly decent one for avatars…so no one can EVER change their avatars. EVER.
It is somewhat cathartic. It helps ease the sting of my past quite a bit. My parents didn’t know and I hid so much of it because I was ashamed. Every time I post on it and say there isn’t a reason to be ashamed…I believe it a little more.
Wendy, THANK YOU for writing this post. I am sick and tired of explaining to therapists (who should at least read up on OCD when they have an OCD patient) that I don’t want to do the dark things I think. That I don’t even want to THINK the dark thoughts rolling around in my mind.
I wrote a play when I was in college called Cutter!/Cut Her! (the slash was pronounced, so “Cutter! Slash Cut her!”) The character Voice portrayed what goes on in an OCD persons brain. The play freaked some people out, but I needed to get it out there.
Thanks again. You ROCK!
Since you brought it up…and since I have both my agent’s and my husband’s permission to discuss this…I’m a cutter. I’d say that I “was” a cutter except for you never stop being a cutter even when you stop cutting. It’s very common among females with OCD as a form of penance behavior–to make up for the dark thoughts–to atone.
My husband asked me to stop after we married and I haven’t since. So, it’s been 15 years, but I still miss the release it used to give me from the guilt for a bit.
I knew I’d found the right doctor when I told him I used to cut to cope and he didn’t ask if I was suicidal, he asked if it helped. That was really the turning point for me in treatment…finding a doctor who understood. He’s an amazing doctor.
It did help, but it’s not a healthy way to cope and I don’t want my daughter to take to self-injurious behavior to cope.
*looks around* Wow, it feels weird to talk about this actually. I just told my best friend I’m a cutter recently. She’d guessed because one of my characters in an unpubbed YA is a cutter with OCD. I think it was too spot-on for anyone to not guess…and that’s why I asked my agent if it was acceptable to discuss because it’ll be obvious if that book is ever published.
Agreed. I have lapses, but not too often. It’s not a healthy way to cope. I’m glad you haven’t done it for 15 years. Congrats!
Like you, I try to be open about my OCD. It’s hard when people don’t understand, but I figure “Hey, if I’m enlightening or educating or maybe speaking to someone who secretly struggles, it’s worth it.”
I’m glad you’re being such a good, understanding example to your daughter. My mom’s about the only one in my life who understands the OCD without having it herself. She’s helped me through some dark times…as has my cat, as weird as that sounds.
[…] is my third post on OCD. I also posted on OCD and Dark Thoughts and OCD and […]
Thank you Wendy for saying things that just needed to be said – on behalf of all us other OCD sufferers! [Big Hug]
I realise that your post was published a few months ago, but I only just stumbled upon a link to it today, and it touched such a chord with me that I had to respond in some way.
As a relatively minor OCD person, but someone who also has chronic anxiety issues and mild depression (and having been a *cutter* too… still am? not for ages!), I have been living with these conditions for 22 years (I am now 43). For many years people have tried to *fix* me – meds, therapies, counselling, you name it, I tried it – until it dawned on me that I should probably just accept that this is who I am. So I live within my limitations, I do the things that I can, and I ensure that I enjoy them – I don’t miss the things that I can’t do, because I know that if I did try to do them I would only end up being very ill, which of course I don’t want to happen because this would only make me unhappy. And I’m a bit fed up with *unhappy* by now.
And to be frank, I really am also just fed up with having my inner mental workings prodded, poked and generally exposed and investigated – nobody can find out why I am the way I am, so I would just like to forget all about trying to *get better*, and concentrate on living happily in the best way I know how.
OK, so some of my behaviour may seem a little *quirky* to those who don’t know me, and my little rituals may seem a bit bizarre, but quite frankly they are not harming anyone, and they make me feel a whole lot happier and safer. And if I feel happier and safer then I am a nicer person to be around – so let me be a little *crazy*, accept that it’s just me being me, and like me for all the wonderful things I can do, rather than look down on me for what I can’t. I’ve accepted myself – it’s about time others did too. (And if this means I have to pop 3 or 4 different pills each day for the rest of my life, then so be it – a small price for mental peace.)
I am no longer ashamed to tell people that I have certain issues with certain things, because if they have a problem with that then that is what it stays as – their problem, not mine. The embarrassment that occurs is generally on the part of the other party, as they don’t necessarily know how to respond or treat me – but I help them out as much as I can with that, and soon it no longer becomes an issue. It is only because mental health issues have always been a taboo subject that people can react this way – and so I try to make people understand that my aim is never to make them feel UN-comfortable, merely to make me feel MORE comfortable. And you know what? 9 times out of 10 it leads to better, more honest and longer lasting friendships than blithely pretending we are all perfectly *normal* when we are not. And that 1 person in 10 who really doesn’t get it?? Well, they never will, so move on, walk away and don’t look back – they’re just not worth wasting the effort on.
Sorry to bang on, but like I said, you struck such a perfect chord with the way I live my life and how this process of *coping* with my *issues* has changed for me over the years, I wanted to resonate your message.
I hope you find a *place* where you are happy with yourself, and that you also find a meds regime that works for you. You will never have 100% control, none of us will – but then, who really does?? Sometimes I think that us *nut cases* (not!!!) are actually far more mentally healthy than most of the other people out there who flip out when they get stressed, or fly off the handle when they don’t get everything their own way! We may sweat the small stuff, but often we are far better at coping when it comes to the bigger things… anyway, that’s a different subject for discussion completely… 😉
Thank you again for your wonderful article!
Anna 🙂 x
I totally agree. While I’m a better person on medication, either way…I am a person and I didn’t ask to be dealt this hand, nor do I deserve it. I try so hard to minimize the impact on others, but the reality is that it spills over and also that they’ve got their own quirks too. I’m very lucky right now to be surrounded by people who understand and love me even without the meds and my OCD on overdrive. I think that’s the reason I’m able to do posts like this. And my issues with contamination are not wrong or right…they simply are. My husband still allows me some avoidance because it’s just too much for the medication to handle. I will never fit the “normal” mold or live a “normal” day but the world is a better place for the outliers in it. I hope those around you allow you the peace to find peace with harmless coping mechanisms…you deserve that.
Thank you for this post. Even though I know that other people go through these things, it helps to hear firsthand accounts. It makes this journey a bit less lonely. (And with something as internal as OCD, it can get pretty lonely.)
Your explanation of “dark thoughts” really resonated with me. I didn’t know what was going on until probably my twenties, but I’d been having thoughts like that since childhood, and they terrified me, especially since I didn’t understand where they were coming from and what they said about me. It’s a bit easier to push them away now that I understand them more (although…will I ever fully understand this?).
Thanks again for sharing. So glad I followed your Twitter link!
I was the same way with the dark thoughts. I didn’t understand that I wasn’t evil and dark inside until my late twenties and found out it was related to OCD. I can only push them out with medication. And there are still times when I feel dark and evil inside despite knowing the source. I’m glad you followed the link too. *hugs* It helps me too to know that there are others of us out there.
This is a terribly late reply; just wanted to thank you again for being so open about your OCD. It can be difficult to expose that side of myself, but seeing others’ willingness to discuss it makes it easier for me. So thank you. 🙂
Thank you for being so open, as always. You make me feel like there’s some hope, and even reasons for why I think and feel the way I do. I’m trying to get help for the first time in a long time. There are a lot of reasons I’m doing it, but mostly it’s because I have to. I don’t know how well it’ll go, but your posts remind me that things can and should be better than they are.
Thank you so much, Wendy, for being there and for sharing these things. I admire you so much for doing so and appreciate it to the depths of my heart.
You’re welcome and thank you for commenting. My posts on OCD are very much oriented to what I wish people had told me about OCD because even some professional sites and doctors will focus on a few more obvious symptoms and forget how much is inside our heads. I have better and worse days when it comes to all this stuff, but I’m glad I recognize them for what they are instead of internalizing it like I did. I’m glad you’re getting help. It’s a big step but it’s worth it. *hugs* And please let me know if you ever need to talk. I don’t believe in sleeping so I’m generally around somewhere. 😉
THANK YOU for writing this and hopefully making more people aware of it. I spent most of my adolescence suicidal, because I was sure I was insane and I just wanted the horrible thoughts to stop. I hope awareness of this becomes more public; I wouldn’t ever wish what I went through on anyone.
Yes. Exactly. I felt so insane and awful inside–and I thought it was me…that there was something seriously monstrous and evil lurking in me. It was a relief to find out it’s a symptom not a disease. *hugs to you* I hope more people learn about what OCD is and isn’t. It’s difficult to be so misunderstood that when I say I have OCD, most people say, “Me too!” cheerfully. *headslap* Thanks for visiting my blog.
Wendy, I do not have OCD, but I can still totally relate to what you’re saying here (though I’m willing to assume/accept that whatever I experience is amplified for people who DO have OCD).
…I wish I had something more to contribute, but I would have to sort through a lot more thoughts before I could do that. But I did want to say I hear you. And I get it.
Thank you, Rhonda. I think it’s impossible to quantify and compare life experiences and come up with an easier or harder score. If there was, I’d feel pretty lucky for the support network I have in real life and online. Twitter has gotten me through a lot of dark days. Thank you for reading this and commenting…it means a lot. *hugs*
Thank you for this. So much. Those of us with OCD need to see others going through the same situation so desperately to know we aren’t the only one.
You’re very welcome. Having gone through it alone…or thinking I was alone…I really don’t want anyone else to ever believe that. *hugs* If you ever need to talk, please contact me through my contact page or hunt me down on Twitter.
Ah yes. My OCD manifests almost primarily in violent/disaster-type thoughts, so I have very few visible “symptoms,” mostly a compulsive fear of fire and an obsession with making sure the door is locked. (I mean, I have other symptoms but they’re more anxiety disorder related.)
I’m not on medication right now for a variety of reasons, but I’m also in a space where I can devote time to managing it, so if that changes, meds may be an option. And I wasn’t diagnosed until my 30s, so for me it was more like a relief, an “ah ha” moment. I try and guide my brain into being obsessed with fun things, or stories or whatever, which sometimes helps and sometimes not.
Like you said, it’s part of who I am. But I think it’s a really good thing to talk about, especially in regards to guilt.
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