My OCD Story

This is a great forum, and I would really like to share my story here. I think it's great to be able to read each other's stories and know that we're not alone. I'll go ahead and apologize for the long post now, lol.

I was always a perfectionist (still am, lol) about my writing, and rarely had much time to play as a child because it took me so long to get my schoolwork done. My teachers always loved my consistently neat work though, lol. To this day I cannot write even a simple note or grocery list without erasing and re-writing it several times until it is neat enough. If the paper becomes too marred from excessive erasing, I throw it away and begin again with a fresh piece. The last time I wrote a note for my son's school teacher (just a quick one saying that he had been out with the flu), I filled the trash can with a pile of draft copies before finally producing one that I felt was acceptable. I re-read this note twice on the way to take my son to the bus stop and again while waiting for the bus to make sure it was okay, and I thought about it several times after he went to school. Even this forum post is being constantly re-read and edited as I go lol.

Unfortunately, this obsession with perfection also carries over to my artwork (drawing is one of my favorite hobbies), and I rarely finish a drawing because they are never good enough for me (though other people may tell me that they didn't see anything wrong with it). I can't just finish my art for it's own enjoyment, it must be perfect in my eyes or it's no good. This makes me sad, as I would love to be able to enjoy my finished art. Lately, I have been unable to even begin a new piece of art because I can't decide on a subject, and when I find something that looks fun to draw, I'm too afraid of failure to try, so I just sit there and organize my pencils and daydream about it.

I have always been afraid of things like stepping on cracks or letting anything like a pole or sign post come between me and my husband when we go for walks (afraid that it will symbolically sever our love). I always have to have things at nice even numbers (preferably multiples of five), like the tv volume set at 20 instead of 19. And I prefer certain numbers over others. Numbers to me are very symbolic. I like the number 3 because my hubby, myself, and our son make a family of 3. So when I microwave food for example, I prefer to heat it for 3 minutes. I see symbolism and prophecy in everything. For example, when I was a teenager I would tell myself that if a certain song played on the radio that night, the boy that I liked at school would ask me out, and if it played at a certain time, that meant that he was my true love. I actually would believe this, and if that song didn't play, I was sure that it spelled certain doom for me. Typical teenage fantasies with an obsessive twist?

When I'm stressed it's the worst, I often get a snippet from a song, a sentence, or a pattern of numbers stuck in my head and can't stop thinking about it. My parents put a lot of pressure on me to be a success in everything when I was growing up, and while I wasn't abused or neglected (actually we had a very comfortable life and a loving family), my mom's neurotic personality caused a tremendous amount of stress in our family. She has never been very mentally stable, the result of trauma in her childhood, and it has had a deep impact on me. When she starting getting neurotic, I got really nervous and then my compulsions got really bad. It scared me when I couldn't get a pattern out of my head, or when I realized I was obsessively doing something over and over because it was soothing.

I often tend to form patterns and rituals about things that are meaningful to me. For instance, I will often obsessively read a webpage about one of my favorite hobbies over and over, every day, several times a day, until I finally move on to something else. I may re-read it for hours at a time, because it makes me feel at peace. Sometimes I will even pick out a single paragraph or image to focus on. When I find a song I like, I will happily listen to it over and over (sometimes for days at a time if I really like it, and it's going in my head even if I'm not physically playing it) until my poor hubby begs me to play something else, or I get embarassed and make myself stop. With the music, I sometimes pick a specific part of the song (usually an interesting series of notes) to focus on.

I don't like to walk by the windows in my house or go outside when there are people out there, or cars driving by. I'm actually physically afraid of being seen, though I have no idea why. If I get out of my car and another car drives by before I can get the door unlocked and get in my house, I get all nervous and feel overwhelmingly exposed and vulnerable. I cannot get in the house fast enough. I don't know what's going to get me if I don't, but I sure don't stick around to find out. Oddly, when I'm out in public around people I'm just fine and enjoy myself (I'm actually a very social person and love to explore new places and meet new people). I only get nervous around my house, it's like a security blanket, and when I'm around it I want to be safely inside where I can hide in my nest from the outside world. It's like I have a split personality in that respect.

When I was a child, I often had horrible and disturbing mental images (accompanied by extreme fear of actually committing these acts) of hurting myself, one of the most common being blinding myself with my pencil while doing schoolwork. This fear was so strong that it left me traumatized for days, and I usually had to leave the room where I was and do something else in order to distract myself from it. Often I would experience an overwhelming phantom smell that can only be described as acrid and acidic and sometimes ringing in my ears during these episodes. I wonder if I might have been smelling my own fear, it was that extreme. I'm a big chicken, I don't enjoy pain and have never actually wanted to hurt myself, but I am AFRAID that I might lose control and do it.

I went through several psychiatrists as a child attempting to deal with this, and many medications that didn't seem to do much but make me sleepy, before my parents finally gave up and decided that I had an overactive imagination and needed to busy myself with more constructive activities. One therapist did actually help me though. He explained to me how to confront and cope with my fears and obsessions, and I have never forgotten his advice, though it is easier to apply it in theory than in reality.

Since I have been married and have a very happy life now, my visions about hurting myself have pretty much disappeared, though I still have all of the other obsessions. Recently, my hubby got a big promotion at work and has been stressed about doing a good job at work (he's a very motivated person and pushes himself hard). Since he got promoted, I have a new and sometimes disturbing obsession with our bed sheets, of all things. If the corners of the bottom sheet come loose from the mattress or the blanket and top sheet become tangled in each other, it upsets me and I often find myself straightening it several times before I am satisfied. When I lay down to go to sleep, I usually get right back up to straighten the sheets again, and I usually straighten my hubby's side too. It's actually kind of comical sometimes, he will be curled up in the blankets and there I am trying to straighten them, but he understands and we laugh about it together. He has a healthy and understanding attitude about my obsessions (he doesn't think I'm crazy, he knows it's just part of who I am), and thanks to him I am learning to find humor in it.

Sometimes it's not funny though, when I wake up several times in the middle of the night because the sheets aren't straight. My hubby is one of those chaotic people who flings body parts and bedding everywhere when he sleeps (thank goodness we have a king sized bed so he has room to do that lol), but it makes me a nervous wreck when he gets all tangled in the sheets and I see bare mattress underneath him where the bottom sheet is pulled up. It's actually disturbing to me to see him like that, he looks vulnerable for some reason, and I want to straighten the bedding so he will be warm and safe again. I don't want to wake him because he works hard and needs his rest, so I sit there miserable in the dark trying to decide whether to lie down and try to force myself to sleep or fix it and risk waking him. And of course, I'm ashamed that I can't control it and just go to sleep like everyone else does. I'm an intelligent, healthy, happy person, it makes me angry and I feel stupid when I get stuck on pointless things like that. I bet everyone here knows exactly what I'm talking about.

Am I healthy like I claim? I am happy, though never completely at ease because there is always something to worry about. Here's a typical train of thoughts from a typical day: Are the doors locked, is the security alarm set, does my cell phone battery have enough charge, is the stove off, are my hands clean, I better wash them since I just checked the mail and touched things outside, is my poor cat going to die soon because he's getting old, is my cat just sleeping or is he dead, maybe I should poke him and make sure he's still alive, I should baby him more because if I don't he'll die and it will be my fault, I should wash my hands because I petted him and he has kitty litter stuck to his paw, are the doors REALLY TRULY locked...you get the point. I get stuck in looping actions sometimes, like washing my hands over and over or checking a lock repeatedly without realizing what I am doing. My hands never feel clean enough, and I am obsessed with how they smell. If I'm eating and they smell like food, I may get up several times during the meal to go wash them. I'm not happy unless they smell like clean soap and don't feel greasy. On bad days, sometimes I can't stop sniffing them, and even on good days I do it every time I touch something. I brush my teeth a lot too, though I try to keep that to a minimum so I don't damage my tooth enamel and gums.

Maybe my story can help someone else. I hope so. One thing that I have learned, and that has helped me to learn to cope with OCD, is to accept it as part of who I am. I have a disability that I must deal with each day, but I refuse to let it rule my life. Some bits are harmless, like reading an article or listening to a song over and over, and I forgive myself those activities. It brings me peace, and if it makes me feel safe and happy than why not indulge a little bit. Kind of like indulging in chocolate every now and then. I just have to watch that it doesn't get out of control and begin to interfere with my daily life. Things that are more serious and harder to control, like the obsession with the bed sheets, I try to deal with as they come. I understand that it is my way of manifesting stress, and I accept that too. I try to identify and address the root of the problem that is causing me to become stressed in the first place, and then deal as best as I can with the obession by confronting it and refusing to let it win. It makes me nervous to ignore the desire to fulfill the obsession when I feel it getting out of control, but I try to find pleasurable things to distract myself with, and talk to my hubby about it when I need the support of a friend. I think that my OCD is relatively mild compared to many people, but it can still get scary when the stress levels get high enough.

I have to keep telling myself that I'm not crazy, I'm intelligent and not mentally challenged even though I can be endlessly fascinated by the stupidest things, like a specific phrase or pattern. I'm a sane and healthy person, just wired a little differently. Some days that's easier to believe than others. I know you know what I mean.

So, if you've been patient enough to read all of this, thank you! Do you have a story to share, some thoughts, or similar experiences to mine? I would love to hear about it! Hugs and cheers to everyone who is struggling down this same road with me! At least we're not alone in this, that's a great comfort.

(Did I win the prize for the longest post? LOL!)

Regular prolonged exercise, food selection (complex carb-rich), caffeine-reduction, and CBT can help. We haven't tried SSRIs.

Cat Lover,

Thanks so much for sharing your story! I think we all have a little OCD in us. There's a history of it in my family, especially my daughter and two nieces. That's why I wanted to read your story. The real reason I'm on this site is because my husband has a delusional disorder. It's torn our marriage apart and I wonder if it has anything to do with my daughter's OCD getting worse.

You sound like a genuinely kindhearted person and that's what matters most.

Good luck and peace to you!

So sorry to hear about that, Beautiful Mind! Dealing with issues like that can be tough, you have to try to be understanding and work together. Minimizing stress (especially finding an outlet that allows one to relax or "blow off steam") can go a long way towards helping ease the symptoms of mental disorders. Sometimes we just need to take a mental break from it all. One major issue that I have (and many other OCD people that I know of have it also) is self-esteem. Low self-esteem and fear of being abnormal can be incredibly destructive, and make symptoms so much worse. Keep working on finding ways to boost your daughter's self-esteem! Let her know that you accept and love her just as she is, OCD and all. If she's anything like me, she needs your strength and confidence that she will be just fine. You can't really change or "fix" a person with OCD, but you can help them learn to live with it and work to get it under control.

I struggled for years with my OCD (and also Asperger's), before finally meeting my hubby. I have been open and honest with him about my issues, and he is understanding, supportive, and never judges me when my disabilities cause troublesome or odd behavior. (I'm lucky to find someone such as him.) He and I recognize these signs as a cue that I need to de-stress, and we work together on finding the root of the problems that cause that stress in the first place, and deal with the symptoms as they appear. Just knowing WHY I do the things that I do when I'm having a bad day goes a long way towards helping me to feel more secure about myself (losing control of a disability like OCD can be terrifying) and then allows me to calm down and work on finding the solution. Educate yourself and your family about their disabilities and identify the causes of any stress, if you haven't already. Knowledge is power.

Remember, erratic or even angry behavior from people suffering mental disabilities should never be taken personally or allowed to stress you out, it is often a symptom of inner frustration or anger at self for not being able to be "normal." At least, that is the case with me. Hope that helps, keep in touch and let us know how things work out!

Keep smiling and keep on keeping on. . .and don't forget to have a healthy sense of humor about life.

Hi catlover,

Thank you for posting this. I identified with much of what you've said, and it was a pleasure to read (and I have an idea of how long it probably took to write). As I'm writing this I can assure you I will be just as long and meticulous

I'm glad to hear that you are happy with yourself, and have a happy family to boot (seriously I would give you hugs for all you shared if the internet was not between us). I'm also an artist. I would like to see your art sometime if you don't mind sharing.

I'm in my early twenties, and right now I don't have OCD. At least, I didn't think so. I'm in college, and one of my professors acts very mildly OCD, and he noticed it in me or projected it onto me or something, and jokingly called me obsessive-compulsive over and over before I told him in exacerbation that I was diagnosed obsessive-compulsive as a child. That shut him up. So now it's got me thinking about my experiences and how I thought I was OVER that. Yet now someone points out so joyously a condition I have managed to keep hidden for a very long time.

Its something I've never been able to come to terms with, and I hoped that people who have similar stories or perhaps just insight could understand, so I will tell mine to go with catlovers.

I seemed to have come out of the womb obsessive compulsive. If my mother took away a toy, it was the end of the world. While I suppose normal children would get upset for a few minutes, yet are easily distracted to do something else, I would not have it at all. According to my mother, as young as 18 months I would cry for several hours over these sorts of things. I was taken to the doctor because she thought there must be a medical issue. Has anyone else had OCD onset so early?

I was first diagnosed at 5 years old as ODD (oppositional defiant disorder) basically just to satisfy my Kindergarten teacher whom called me an "unjust" child because I refused to do anything I was told. Rebelliousness and stubbornness can be normal... the difference was that I HAD to be that way. I felt that if I didn't continue whatever I was doing at the time, if someone interrupted me while I was working on a puzzle or putting something away or eating for instance, this overwhelming terror would seize me that felt too big for my tiny body and I would scream or cry or become violent to get rid of it. On the outside, it looked like tantrums of a spoiled brat, even though my parents never spoiled me. I couldn't articulate what I was feeling. They would ask, "Why did you do that?" and I would say "Because my stomach hurt." I felt so wrong and embarrassed that whenever I'd feel the terror rising inside I'd run away from school and hide in the bushes. My aunt called me "evil" to my mother, and I overheard her and became obsessed with the idea that I was evil (when I was an adult I found out my sister sincerely believed I was possessed )

I grew up in a strictly Christian household, and so the idea of devils and angels was all around. I was told that people who disobeyed God's laws went to Hell to burn for all eternity... and this sort of guilt developed in that knowing this didn't stop me from disobeying. I remember getting in trouble for something... I think I was about seven years old, and I was ushered into my room for a time out, and I was screaming and carrying on the whole way until the door was slammed behind me. I turned around and just stared. I remembered the commandment about obeying your parents, and I thought the devil was now waiting for me in Hell, and I stood there and imagined in detail what it would be like to burn alive and never stop.

Ok I won't get too dark and creepy... but that is how it was. When I got older the "compulsive" side came out more, and I was diagnosed as OCD eventually. I never got stuck on patterns or counting, but I made lists for everything. I would schedule when to brush my teeth, when to dress, when to do everything and I put time limits for it. If it took longer, too bad. If it took shorter than the time specified, I'd sit and wait for the right time. I kept most of my compulsions hidden because I knew someone would want to "do" something about them and I didn't want to be bothered. I'd make excuses for my behavior, or pretend I wasn't actually adhering to the "schedule" and hoped no one would notice why I was dawdling.

I also had fears of harming myself when I was about ten. It wasn't centered around schoolwork though. I became obsessed with the idea of killing myself, just because I knew it was possible. I knew that suicide was a sin, and I was convinced that the devil was trying to tempt me to do it because he wanted to have me in Hell, and I was so scared that I was going to jump out a window or drink draino and I'd imagine dying in horrible ways. I was so terrified I couldn't sleep at night, and I cried about it under my sheets. I asked my mother what would happen if someone swallowed laundry detergent, and she said it would burn their stomach, so I spent a day imagining what that was like. I guess I was pretty morbid, yikes.

Then it switched to being obsessed with some air-borne pathogen making me sick, and killing me, or that my heart would spontaneously stop. When we went to the store, I refused to go down the cleaning supplies isle because I believed to the chemicals would seep out and I'd breathe them in and die.

When my obsessiveness became an issue in school (well, when I was too big to physically handle), I was started on medications and kept on heavy doses to the point that I was completely unable to function. The obsessive-compulsiveness went away, I think. I mean, I haven't had an issue with it like I did before the medication. The terror was gone. But everything else was gone, too.

My obsessiveness had good aspects. I was very attentive and creative, and a hard-baller kid. I drew, painted, sculpted, and wrote with very clear perception and detail. I created a stop-motion animation that was a minute long when I was nine, even though it took an entire day to position the character just right for each frame. I was fascinated with everything. Even though I listed my activities, I also listed the animals I saw outside, and collected copious information about the ant colony in my backyard. I collected objects from dumpsters and made collages out of them, diligently checking every day for useful items. I decided I wanted to bring back the dinosaurs for real after seeing Jurassic Park and read books upon books about genetics. I decided I wanted to go to Australia one day and developed money-making schemes, and because I had a rather dominating personality among other children I could just walk up to them and tell them to do something (like man my lemonade stand or go door to door selling raffle tickets) and they'd do it. That part isn't so much OCD, but it was parts of my personality that left when I was medicated for it.

I just slept. I couldn't get out of bed, and I refused to go to school anymore. I became deeply depressed, and not because of some chemical imbalance, but because my environment was terrible at the time (divorce, domestic abuse, homelessness). But for some reason, this seemed to be disregarded by doctors. I don't remember these things being addressed. I wouldn't talk about anything to them, because I didn't trust them. Perhaps that is why? So again because of school I was given a different medication cocktail, and like a puppet, I came back to life. But I was TOO awake. I didn't sleep for four days at a time and spent my waking hours on the internet chatting, writing or drawing. I shook and developed a tic, and eventually when I was 14 I started hallucinating.

Again like everything, I kept this to myself as much as I could. The first time I hallucinated I heard voices whispering, and I thought they were coming from the apartment next-door. But then when I got up and walked to the other side of the room, I heard them still with the same loudness as against the wall... and I knew something was wrong. I didn't tell anyone because I felt like they would just give me more medication and I didn't want that.

Ok this is getting off topic for OCD, but I am interested in how people have been treated for the disorder. My treatment (between 1996-2001) went terribly awry. I felt like they had no idea what they were doing and were just shoving pills down my throat to see what happened. Even after my mother finally discovered that I was hallucinating (by this time I acted like a paranoid schizophrenic so it was hard not to notice) and requested that I be taken off the meds, they opposed it and instead offered to give me different medications (I only actually saw a therapist once every six months and I hated them all).

My mother weaned me off them anyway... and this is sorta what I'm getting to... after that, I was normal almost instantly. It took almost three years to come to terms with that. The OCD is gone, the hallucinations are gone, the terror is gone, the guilt is gone...

I've felt like something is missing ever since. Like I was supposed to be someone, and it was taken away from me. That I was supposed to be OCD. That I was born that way and it was okay, that I didn't fit in and it caused all that anxiety but I could learn to deal with it like catlover has. I don't feel like I can reveal my childhood to anyone because it was so plagued with misery and mental illness.

Telling that teacher I was OCD... I wish I hadn't. I wanted to because I wanted to tell SOMEONE, and he made it too easy. Does anyone understand? I'm not OCD. I'm not evil and I'm not possessed. I'm not disturbed. I'm not brilliant. I'm normal. I always wanted to be and now that I am it feels like I'm not me.

Do you think you would ever feel this way if you were suddenly not OCD anymore?

Thank you for reading... and thanks again catlover for posting (oh gosh I think I outdid you on post length goodness). For a long time I thought I was just a bad person, and knowing how other people experience this disorder gives a richer and more balanced perspective.

Wow! I have a daughter who is 11 years old and she was diagnosed with OCD when she was in the 1st grade. As a parent, it has been one of the hardest things that I have ever had to deal with. The spectrum of emotions and feelings that I have had over the years is very broad. I have spent a lot of time feeling frustrated, being angry with her, feeling inadequate as a parent, feeling sadness, feeling anger, being so worn out thinking about it that I don't even want to get out of bed some mornings, and also being embarrassed. I don't choose to feel any of these feelings and It makes me hurt even more because I realize that her pain is even more severe than anything I am going through as a parent.

She is very smart! From about the age of two she started enjoying things like unloading the dishwasher, folding the laundry, making her own lunch, cleaning the house, and other activities that small children usually don't do. She has never watched television and is happiest when she is busy. She is my third child out of four and she is very controlling of what everyone is doing which is pretty irritating to her siblings. She is very organized and even keeps me in line as far as reminding me of what my schedule is and making sure that I don't forget things that I have committed to do. She hears absolutely every conversation that goes on around her and remembers everything!!! When she is happy, there is nobody more enjoyable to be around. Everyone in our community knows her and loves her. She isn't afraid to talk to anyone and she is very interested in the going ons of the families and people around us. People that know her and love her would be so surprised to know what is going on in her head and the anxiety that she feels every day.

When we first noticed the signs she was in the first grade and just learning to read. It was very important to her to be the best reader in the class and earn the most points for the books read and tests taken. She never really learned to love reading. She would read a book just to get it finished and pass a test and then the knowledge would leave her. She is a very fluent reader to this day, but she has a lot of trouble with comprehension because she is constantly worrying that she skipped a page. She still manages to pull off straight A's, but I don't think she retains much. Another thing that began were intrusive thoughts. She started worrying that she might decide to smoke someday, she wanted to watch her very overweight teacher use the bathroom, she would worry that she was going to stab someone with a knife, or that she was going to hurt herself. We began being very careful about having the news on when she was around because she would hear something bad that someone did (even 200 miles away from where we live) and she would worry that she was the one that did it. Say, someone had been hit by a car, she would repeat over and over again "Mom, I think I did that", or "I couldn't have done that because I wasn't in that town", or "I couldn't have done that because I don't know how to drive". She expressed the fact that some of the special ed kids in the school made her angry because there was something wrong with them and she wanted them to die. She knew this wasn't right to feel this way and it would cause a lot of anxiety. Over the last several years she has gone through the obsessive handwashing and worrying that her heart is going to stop or that she is going to die. She would hear that someone was sick and then she would be sure that she had the same thing. There have been times when her younger sister hasn't been able to get a good nights sleep because she would wake her up all night to make sure that she was breathing. Nighttime is hard because she has to ask me multiple questions over and over and over and over until she can finally go to sleep. She cried and cried the other night because she thinks that because she has so many bad thoughts that she must be a bad person and she doesn't want to be a bad person.

She has hidden it well from most of the people around her. We have kept it pretty quiet as well, and we have tried to deal with it as a family and love her through it. We tried some counseling early on but she was very angry and wouldn't cooperate and I actually didn't feel good about it. About a year ago we figured that she was getting old enough to make some decisions about how to deal with it and we posed the possibility of medications. She really wanted to give them a try. We tried them, but she didn't like them, and just like the above post, I didn't like some of the personaltiy changes that I saw in her, even though there was less anxiety and frustration in our home. We had her quite taking them. I really think that OCD is part of who she is. It's partly why she is so capable of accomplishing many of the extraordinary things that she does. We're just hoping that she can learn to control it as she matures. If she can channel it in the right direction she will do amazing things and I hope and pray that she can do that. I love her so much and I want her to be happy and realize what a good person she is. I want her to be happy and relax and enjoy all of the blessings of life that she has. So many people love her and want the same. She's been at her grandma's house for two nights, and to be honest, things are much more peaceful and easy, but man I miss her when she's not here.

Thanks for all of the people who have done some sharing. It makes me feel like we aren't alone. I feel so alone a lot and I feel like I can't talk to anyone because they won't understand. I don't want to give anyone any reason to peg her as anything but the wonderful person that she is.