The other night I wrote down some of my thoughts for that moment about where OCD has taken me. I went off my medication near the end of last year and, despite going back to my psychologist and going to weekly group therapy, I have allowed the OCD to come back with a vengeance. I have an appointment with my doctor to discuss going back on medication next week. I was rereading some of Dr. Wilson’s “Stopping the Noise in Your Head” last night and regained some courage and confidence. But in the spirit of being honest and letting others know that recovery isn’t always permanent, I thought I’d share these thoughts: 

Me as of June 11, with some edits

I’ve literally let it get so bad that it’s trapped me into a box and I can’t function. I’m afraid of my underwear, my clothes getting dirty, going to the bathroom, washing my hands, getting soap spray on my arms or clothes or watch, my clothes touching my bum or near my bum area. I’m afraid of my body or clothes touching the toilet. I’m afraid of wiping and getting toilet paper flecks on the floor, my body, or my clothes. I’m afraid of dirt or things on the floor– garbage, flecks of paper (especially white or brown). I’m afraid of my kids– not washing their hands or getting poop or pee in their underwear or on their towels. I’m afraid of brown stains on their hand towels. I hate them eating chocolate or drawing with brown markers because the stains get everywhere. 

I’m afraid of other people– of their being dirty or unclean and getting me or my things dirty. What if I sit somewhere or at someone’s house and then I get dirty and bring it back to my house? I don’t like sitting in chairs or pews at church because they are filthy. 

I often use tissues to turn on or off faucets. I use Clorox wipes to clean toilet paper or pee from the floors. I bleach towels and underwear. I use a tissue to turn on the wash machine or I wash my hands after. I use my bath towel super carefully, using different parts for different parts of my body. I have sanitizing hand wipes in the car and garage. 

I wasn’t always like this. I can’t remember how I used to be normal. It seems so far away now, and impossible to find my way back.

I don’t trust my husband or kids to be clean or to clean properly. I don’t trust the kids to wipe their bottoms enough. My husband wipes my daughter because I can’t handle it– what if I don’t do it enough? What if I get poop on myself or her accidentally? I literally have a panic attack thinking about my husband going on trips just because I don’t want to have to wipe my daughter’s bottom if she poops. 

Relationships

My relationships are strained at best. I can’t relate to people. I don’t have patience. I see sources of anxiety rather than relationships. My kids are huge triggers for me. My husband is mad because of the OCD and how I let it bully me. He tries to bully it, but it is a part of me and so I end up feeling attacked. I don’t have good friends. I can’t.

I don’t know what “normal” people do and often when I find out, I think what they do is gross, not enough, or disgusting. I try to control everything I can. To me, things are dirty and unclean inherently rather than clean or just things.

Fear?

Sometimes I’m not even sure what I’m afraid of happening– I just feel like I have to be clean, to be perfect, to be sterile. It’s at the point where some end result of the dirtiness doesn’t even matter– I’m not even trying to protect myself or anyone else from getting sick. I simply feel like I cannot be unclean. I cannot. The anxiety is too much. 

Sometimes I think I want to be sick. I think that in a way it would be a relief to be ill and die so I don’t have to deal with this this anymore.

I’m tired of it. But I feel like I can’t stop. The worse it gets, the more I feel trapped, like I have to keep doing the compulsions even more. They add up and pile on top of each other and new ones pop up. I’m exhausted. I don’t want to keep going. I want to sleep or just hide but nowhere is safe or clean. I don’t want to go on my bed unless I’m committed to go to bed for the night. I feel like my things are dirty, like my kids and my family and I myself have made my house unclean. I feel like my body isn’t clean or safe. It’s dirty. The shower is dirty. The floor is dirty. The sinks and faucets and soap containers and light switches and door knobs are dirty. I can’t escape the dirtiness and so I live in a constant state of anxiety.

I cannot handle not knowing what a stain is or what a speck of dirt or fuzz is on me or my clothes. I hate seeing things on the carpet or floor. What are they? Should I clean them? How?

Catch-22

I worry that I’m leaking urine or peeing my pants. I worry that I didn’t wipe properly and have poop stains in my underwear. I feel like I can’t handle any of those scenarios and live in dread and fear of going to the bathroom to check, then worrying about not wiping properly again, or about toilet paper flakes getting on me or my clothes, or my clothes touching the toilet or my bum area… and I worry about hand washing after: will it be enough? Will I get soap backsplash on my clothes, my arm, my watch? Will I have to wash again? 

So I don’t drink a lot of water. Or I restrict and eat certain things so I don’t poop so much. My pelvic muscles are trash from stress and the constant tightening, holding things in or trying to at least. My jaw clenches automatically and my teeth hurt. I am breaking out in pimples on my face. I have a cut that won’t seem to scar from weeks (?) ago. It sometimes bleeds at night. My hands are redder than they should be. My pelvic region aches and I wonder if I’m sick or getting sick. My posture is awful because I look down and ahead of me to make sure I don’t step in dog poop when I walk.

I don’t want to go out for long periods of time. I dread going out of town. Mostly because of bathroom worries and fears. I don’t like using bathrooms out, not that I like using them at home either. I hate going to the bathroom, but this intense fear makes me feel like a prisoner, like I can’t go or be anywhere but my house.  

Trapped

OCD in general makes me feel like a prisoner. I am restricted in so many ways and by so many things. I fear almost everything. Life is not fun or happy or joyful. I am not excited to go on a walk or play outside with my kids. I worry about leaking urine or stepping in dog poop or looking “wrong” or people judging me. But staying at home isn’t easier or nicer. I worry about so many things at home and engage in compulsions much faster when I’m not in public. It seems so much easier to try and ease the anxiety with a compulsion than worry and be tormented by obsessions and fears.

But it doesn’t actually help, doing the compulsions. I know it doesn’t help. I know it makes things worse, but I still find myself powerless to stop. I feel like I’ve lost my agency to the OCD. It has me. I don’t have myself. I’ve lost myself. I feel like “I” am gone. 

Have you felt any of these things before? What have you done to keep going when you felt like it was too difficult?

3 thoughts on “When OCD Takes Back Control”

  1. I so appreciate your honesty. I’m proud of you for making the decision to go back on medication. This sounds horrific. The way you are living is like being in prison. The fact that you became better before proves that you can again. I’ll be praying for you. You don’t have to be suffering this much and your family does not have to be affected in this way either. You’ve made a great decision. God bless.

  2. I don’t have any advice, but since reading your book I’ve thought so much about you, your courage and life. I don’t have OCD, but your candidness and honesty have made me a better person these last weeks. I’m sorry things are so hard right now. Many blessings to you and your family. I hope you are given moments of peace amidst chaos.

  3. Thank you for your honesty about the ups and downs of this formidable illness. I have severe anxiety, a different type though I have some contamination issues mixed in, too. Reading about your journey has strengthened me immensely, and I’m so grateful for your courage and openness. I’m sorry to read how hard it is for you right now, and I hope the meds (and everything else you are doing) will come together quickly to offer relief.

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