Descriptions of OCD from Patients' Perspectives
“When I'm doing my homework, I worry about it not being done perfectly. I spend a lot of time making sure my handwriting is perfectly neat for my teacher. I know that other people have sloppy work, but it makes me really uncomfortable if I leave things so that they don't look right. I also have to re-calculate my math problems over and over just to make sure that I didn't make a mistake. But, the worst thing is packing my backpack for the next day of school. I check again and again to make sure I have all the books, folders, pencils, and homework assignments that I need. I know that after I check them once and especially twice that everything must be there, but I can't get rid of this feeling that I might be missing something that I really need. I used to check 15 times exactly. Now, I don't check a specific number of times, but just stop when I 'feel right'. This takes a really long time. I'm really embarrassed about this and I hope that my parents don't know what I'm doing.“
“I'm always afraid that I haven't locked the front door, turned off the stove, or unplugged my curling iron. It's almost like I can't believe my own eyes, like, I know that the curling iron is unplugged but yet I can't help but stare at it for a few minutes saying 'unplugged, unplugged' before walking away. Sometimes, this doesn't even help and I barely drive one block away from my home before I have to turn around to go home and check it again…“
“I hate germs and I see them everywhere. I don't know how other people aren't just as bothered by it as I am. When I touch doorknobs or elevator buttons, I feel gross and dirty. I don't want to do anything else with my hands until I wash them or put anti-bacterial lotion on them. If I don't, I feel like I won't be able to get my mind off of it. These things are nasty but what really bothers me are people who are sick or who look sick. Whenever, I see someone sneeze or looking really fatigued, I can't help but wonder if they might have AIDS. I try to avoid them or anything that they have touched. This makes me always on edge at work and gets in the way of me getting things done. If someone sick hands me paperwork, I'll try to let it touch as few things as possible. On these days, I usually stay late and wash my desk and everything on it just in case any AIDS germs got on my things. When I get home, I strip my clothes off and put them in a special bag so that they don't contaminate my other things. I don't feel better until after I've taken a shower. This routine is exhausting.“
“Sometimes when I'm in the car I feel a bump. Even though I didn't see anything I wonder if I might have hit someone. I check all my mirrors and don't see anything on the ground. Then I start to fear that maybe I hit someone and their body is now in the bushes. Sometimes, I get out of the car to check, but so far I haven't found anything. At night, I always watch the news to see if they talk about a hit and run accident that occurred in places where I was driving. Another weird and scary thing has also been happening. Sometimes when I hold my cat, I get a thought ' what if you put your hands around her neck right now and choked her to death?' This thought terrifies me. I love my cat so much and I'd never do anything to hurt her. But, why did I have that thought? Maybe I really want to, or maybe I might one day lose control and actually do it. Even though I love my cat, I try to touch her as little as possible now. I'm afraid I might hurt her.“
“I know this might sound really strange, but I feel contaminated by death. This happened right after I attended a funeral for a friend of the family. I felt like I was losing it and needed to get out of the church. Since then, I've avoided hearing about death and I don't read the newspaper or watch the news. I also avoid contact with people that I know have attended funerals. If they touch me, I try to wash as soon as possible. I've changed my route to work so I don't have to drive by a cemetery. But, if I can't avoid going this way, I roll up my windows and turn off the air conditioning. I try not to look at it and I'll wash my car later that day. I don't know what I'm exactly afraid of… maybe I fear being marked for death in some way. All I know is that it makes me terrified and it makes me wash.“
“I grew up in a very religious household. I've always loved going to church and talking to God with prayer. But now, I try to avoid thinking about God because of my thoughts. I keep having blasphemous thoughts and disgusting images about God . I'm afraid to tell anyone because a good person would never think such things. These thoughts pop into my mind most when I'm at church. At first I tried to counter these bad thoughts with good ones, but the thoughts became so scary that now I just try to avoid any place that might trigger these thoughts. I try not to even drive past a church anymore. At night, I still pray but it takes me a long time because of my awful thoughts. I need to keep praying until I can finally get through my prayers without any bad thoughts or images.“
Obsessive-Compulsive Disorder (OCD) affects 3.3 million adults in the United States. OCD also affects 1 - 2 children in every hundred. The age of onset of OCD symptoms is variable with symptoms typically first appearing anytime between preschool to early adulthood. Many people with OCD report that their symptoms wax and wane - for no apparent reason, there are periods of time when their symptoms are better and periods when they are worse. Symptoms typically worsen during stressful periods (e.g., getting laid off from work, getting married, starting school). In addition, it is also fairly common for the type of OCD to change over time - for someone to be bothered by different types of obsessional thoughts in their adolescence than in adulthood. Without treatment, OCD tends to be a chronic condition that generally gets worse over time.
People with OCD experience either obsessions or compulsions - with most people having both obsessions and compulsions. OCD thoughts and behaviors usually cause a significant amount of distress, take up a lot of time, or interfere with a person's work, school, social life, or family relationships.
Obsessions are recurrent, persistent thoughts, images, or impulses that are distressing and intrusive. People with OCD typically try to ignore, suppress, or in some way neutralize the thoughts. Usually people realize that their fears are not realistic or logical but this can vary. Sometimes OCD sufferers know that what they are fearful of can't really come true, but they are still worried. Other times, OCD sufferers are very certain that this illogical fear will really happen. Some examples of common obsessional thoughts are listed below.
Compulsions are repetitive physical behaviors or mental acts that a person feels driven to perform - typically, these compulsions are usually done in an attempt to neutralize or reduce the distress created by the disturbing obsessive thought. Some common compulsions are listed below.
Research indicates that it is not the content of the thoughts themselves that distinguishes people with OCD from those without OCD - rather, it is the frequency of these thoughts and the extreme amount of distress they cause that distinguishes OCD. Most people have thoughts like these from time to time but they just think that the thought was strange and easily let it go, but people with OCD are very distressed by the thoughts and have much more difficulty getting rid of thoughts. Some people with OCD describe it as feeling like having a faulty fire alarm in a building - the alarm keeps going off and making them think that danger is there, even though there really is no fire.
The fear that they might harm themselves or others
“What if I lose control and pick up the knives at the dinner table and stab myself or my child?”
Violent or horrific images
“I can’t get the image of mutilated bodies out of my head, what’s wrong with me…am I going crazy?”
Fear of blurting out obscenities or insults
“What if I meet my boyfriend’s parents and in the middle of saying ‘hello’ I accidentally tell his mother I hate what she’s wearing and shout an obscenity at her?"
Fear of harming others due to carelessness
"What if I hit a pedestrian without realizing it when I was changing the radio station -- I took my eyes off the road for too long...”
“What if I left one of the windows open at home and a burglar got in?”
Concern or disgust with bodily waste or secretions (e.g., urine, feces, saliva)
“What if my pants touched the toilet in the public bathroom, maybe I got feces on them!”
Concern with dirt or germs
“I hate touching doorknobs or other public things, I feel like they are crawling with bacteria and viruses.”
Excessive concern with household items (e.g., cleansers, solvents)
“What if my Drano bottle is leaking and my cleaning lady doesn’t see it, touches it, and dies?”
Excessive concern with environmental contaminants (e.g., asbestos, radiation, toxic waste)
“I won’t go into anyone’s house if they have a cottage cheese ceiling, I think I heard those have asbestos in them and I won’t go near any construction site.”
Excessive concern with animals or insects
“I guess dogs are nice, but I hate it when they come near me…what if they have fleas and give them to me or what if they lick me -- their tongues have been everywhere. I feel gross when I’m around them.”
** frequently people with contamination obsessions are fearful that they might get ill or die if they come in contact with a contaminant or that they will accidentally spread the contaminant and others will get sick as a result
Forbidden or perverse sexual thoughts, images, or impulses
“I’ve always been a very religious person, but now whenever I see a woman I imagine her naked and in disgusting sexual positions. I feel like I’m committing adultery.”
Excessive concern regarding thoughts about children or incest
“What if when I hugged my niece, I got a little too close…where exactly was my hand?…oh no, did I just molest her?”
Sexual obsessions regarding homosexuality
“I’ve always considered myself straight, but the other day I was on the bus and I noticed that I was looking in the direction of another man’s crotch…have I really been lying to myself all this time? Does this mean that I’m really gay?”
Difficulty throwing things away
“I have boxes and boxes of pictures that my kids drew when they were young. I would like to have more space but if I throw them away I feel like I will lose the memory or a piece of my relationship with them. Plus, they may want them in the future.”
“Why should I throw away these empty plastic milk cartons? I know I have a lot of them, but why get rid of something that could be useful - I can use them for spare change, to water plants with….”
Fear of losing important information
“To get rid of a newspaper, I have to make sure that I have scanned every page for all important articles. I mean what if I miss reading something important, something that could really affect my life or the life of someone I love. I really need to hang on to these papers until I have a chance to go through them all thoroughly.”
Concern with sacrilege and blasphemy
“When I’m in church I keep having the most disturbing thoughts. I can’t get them out of my head. I keep thinking the word ‘hell’ and thinking ‘I really love Satan’…what’s wrong with me?"
Excessive concern with right/wrong or morality
“I feel like an absolutely awful person. The other day my co-worker asked me if I liked her new shirt. I said ‘yes’ and this was a lie. I can’t get this off of my mind. Now, I’ll always think of myself as a liar.”
Need for things to be exactly right or the need to do things until it ‘feels right’
“I spend a lot of time arranging my closet. It just doesn’t feel right if all of the shirts aren’t hanging in the same direction and if they are not correctly separated by color and long vs. short sleeves. Sometimes my wife hangs things up in the wrong places and pushes my clothes together. This really bothers me.”
May be associated with magical or superstitious thinking
“If I accidentally tap one leg, I need to tap the other side. I know it might sound strange, but I fear that if I don’t that something bad will happen to people in my family. Sometimes I also think that if I don’t do the other tap to make it even that it might affect other things too like stories I see on the news…for instance, if I don’t tap the other side, maybe a little girl that was recently abducted will never be returned to her parents.”
Need to know or remember
“Maybe I wrote the wrong time down for the meeting with my boss. Maybe I should call her just to check.”
“I don’t know if I remember everything that I read in that book chapter, maybe I should read it again just to make sure.”
Fear of not saying just the right thing
“As a teacher, I need to think really carefully before responding to a student’s question…if I answer with the wrong words or the wrong tone, they may decide to drop out of school.”
Fear of losing things
“When I was at the store, I opened my purse. I didn’t notice anything, but maybe something fell out…I won’t feel right about this until I check it.”
Intrusive (non-violent) images or sounds
“I know that most people find the sound of the ocean soothing, but I can’t get this sound out of my head…it’s driving me crazy.”
Colors with special significance
“I can’t use red or black pen to write my children’s names, this might mean that I really want them to die.”
Superstitious fears
“When I turn on the water in the sink or use a doorknob, I have to turn it 4 times exactly. There are 4 people in my family, so this is a good number and if I don’t do it 4 times this might mean that something bad will happen to my family.”
Concern with illness or disease
“Even though the doctor said I was fine, I can’t get it out of my mind that this small bump on my skin might mean that I really have cancer.”
Excessive concern with a specific body part or an aspect of appearance
“Although many doctors have told me that I have 20/20 eyesight, I keep worrying that my vision is deteriorating...”
These compulsions can be present on their own, but they commonly occur in response to having a distressing obsessive thought. Although many compulsive behaviors are commonly linked to certain types of obsessive thoughts, any type of compulsion can be related to any type of obsession.
Excessive or ritualized hand washing, bathing, or grooming
“I never feel like my hands are clean. I need to keep washing them until it feels right. I have washed my hands so much that they are now cracked and dry.”
“I have to always shower in a particular order, top to bottom and I run the soap over each part of my body 3 times. If I lose count or become distracted, I need to start over again to make sure that I’m doing it in the right way.”
Cleaning of household items or other objects
“I hate it when my brother uses the remote control, he is dirty and I think he puts germs on it. I wipe it with a Wet Wipe before I use it.”
“Every time I come home, I dunk my shoes in disinfectant. I think I might have stepped in feces while I was out and I don’t want to bring that in the house.”
Other measures to prevent or remove contact with contaminants
“No one is allowed in my room. I can never be sure what germs they might bring in there. It even makes me upset when my mom goes in there to put my clean laundry on my bed.”
“Sometimes I put sandwich bags on my hands. I feel like they are dirty but I am so tired of washing them. This way I can keep the germs away from my food or anything that I touch without washing.”
“Whenever I open a door, I try to either use my elbow or pull my shirt sleeve over my hand to open it. If there are lots of people around I’ll sometimes just lag behind so that someone else will open the door for me…that way I don’t have to touch the disgusting door.”
Checking locks, stoves, appliances
“Sometimes I check the light in my closet multiple times before leaving. The even more frustrating thing is that sometimes I can’t remember if I’ve checked it or not. Sometimes I just stand there and stare at it for a long time...it’s like I can’t really believe my own eyes.”
Checking that did not harm self or others
“Sometimes I check my body all over before going into the shower. I think 'what if I really stabbed myself and I didn’t know it'…I need to look around for evidence.”
“I frequently have to drive around in circles to check the street and make sure that I didn’t hit anyone without knowing it and they are not bleeding on the side of the road.”
“What if I dribbled water on the floor when I washed my hands and now somebody has slipped on it and hurt themselves. I better go back there and check to see if anyone is hurt and wipe up the floor just in case.”
Checking that nothing terrible happened
“Sometimes I get a bad thought or feeling and I have to call my son to make sure that he is really ok. He says that I am driving him crazy with all the calls, but I can’t help it…I feel like something terrible may have just happened to him.”
Checking for mistakes
“Even though I’ve looked over my homework problems twice already, I keep feeling like I’ve missed something and I need to look them over again and again.”
“I always hand in things late to my boss. I keep thinking that I’ve filled forms out wrong or, worse, that I might have written something bad, like a swear word, on it. I need to keep checking them. When I do turn them in, I have a sinking feeling in the pit of my stomach, that’s why I try to hold on to them for as long as possible.”
Checking tied to somatic obsessions
“Everyday I need to check my body for any bumps or discolorations that may indicate that I’m really sick. Sometimes I also just sit and focus on how my body is feeling to see if I have any strange sensations that will also alert me to medical problems. I visit my primary care physician a lot but he always tells me that I’m fine.”
Re-reading or re-writing
“I feel like my homework assignment must look perfect before I turn it in, so I spend a lot of time making sure every letter looks just right. So, lots of times I never finish because it takes so much time to make everything look just right.”
“If I’m reading the Bible or something that’s really important to me, I need to re-read it a lot of times. Sometimes I’m worried that I didn’t really understand things and sometimes I need to re-read because the first time I read it, I didn’t have the right feeling when I was doing it.”
Need to repeat routine activities
“I have to turn the light on and off and walk in and out of doorways until it 'feels right".”
Counting
“Whenever I leave my bathroom, I need to count the bottles of shampoo that are there and other items in the bathroom before I feel like I can leave.”
“Whenever I am walking, I need to count my footsteps. If someone interrupts me I get really upset and I’d like to go back to where I came from and start again.”
Ordering/Arranging
“I know it doesn’t make any sense, but I don’t feel comfortable unless all of my shirts in my closet are spaced exactly one inch apart. It takes a lot of time to do this.”
“Everything in my office has a place and everything needs to be in just the right spot before I feel like I can begin. I hate it when other people use my office, they think that nothing looks wrong, but I feel like they leave it looking like a mess and it takes me a long time to straighten up after them.”
Hoarding/Collecting
“I avoid throwing things away. It makes me too upset, I never know if I’m making the right decision to get rid of something or not, I mean what if I make a mistake and end up needing something that I’ve thrown out? Sometimes, when I do try to clear things away and throw things out I realize that I never really get rid of much, I just kind of churn things from one pile into another. Everything just seems too special or important to get rid of.”
Mental rituals
“Whenever I think of a bad word, I have to counteract that with thinking a good word, so if the word ‘hell’ pops into my mind I have to think ‘heaven’ to make it okay.”
“Sometimes I have an image of a person that I really don’t like. Then, I become worried that maybe that means that I might somehow become like that person. To make sure that doesn’t happen, I need to think through a list of names of people that I do like.”
Excessive list-making
“It seems like I have a list for everything. In fact, I have so many lists that usually I can’t find the list that I may be looking for. If I don’t write lists…shopping lists, places I want to travel to, thoughts that I’ve had, etc…I feel uncomfortable and feel like I’ll forget this important information.”
Need to tell, ask, confess
“Even though I know that it is probably no big deal, lots of times, I feel like I have to tell my mom about every little thing that I did in case I might have done something wrong…I need to tell her that I was a minute late to class, that I took a cookie out of the cookie jar and ate it, etc.”
Asking reassurance
“Sometimes I feel like I wouldn’t be able to do anything if I wasn’t able to talk to my dad. I ask him all the time…'are you sure that doing this is really ok, are you sure that I’ll be ok, are you sure that this won’t hurt anyone, etc…”.
Need to touch, tap, or rub
“Whenever I touch one ear I feel like I need to touch the other side too. This usually happens with lots of things. I feel like if I don’t do the other side too I’ll feel unbalanced in some way.”
Ritualized eating behaviors
“I know this sounds strange, but I need to eat all of my food in alphabetical order. For instance, first comes the corn, then the potatoes, then the steak. If I don’t eat them in that order, I feel really bad.”
“I need to cut up my meat into pieces that are all of equal size. This takes a really long time and my food is usually cold before I can eat it.”
Superstitious behaviors
“I avoid every crack on the sidewalk. I mean the saying does go ‘step on a crack and break your mothers back’…why take a chance with something so important?”
Even though there are very effective treatments available for OCD, it frequently goes unrecognized for years. In part, this is sometimes due to people being ashamed of their OCD symptoms and hiding them or making excuses for their “unusual“ behaviors. In children, OCD symptoms may sometimes be mistaken as “behavior problems“ at school or home; this is usually because children (like adults) become very upset when their obsessions are triggered or their compulsions are interrupted - thus, these situations may provoke temper tantrums. For example, a child with contamination fears may become very angry when her brother, who has just been at the “dirty“ park, tries to sit in her (“clean“) chair at home.
Unfortunately, OCD symptoms are sometimes also not correctly diagnosed or treated by professionals. Research indicates that on average, people see 3-4 doctors and spend over 9 years in various treatments before receiving the correct diagnosis or treatment for their symptoms.
The two treatments that have been found to be effective for OCD are medications, Cognitive-Behavioral Therapy (CBT), or a combination of both. The typical medications used for OCD are the serotonin reuptake inhibitors (or SRIs) - there are many different medications in this class (e.g., Prozac, Paxil, Luvox, Zoloft, etc.). Sometimes it is necessary to try several different medications to find the right one that will work for you. However, medications alone rarely eliminate all OCD symptoms and usually many compulsions and avoidances remain. Frequently, symptoms return when the medication is discontinued. For these reasons, medication management for OCD is rarely used alone and it is usually combined with CBT.
Although there are many different types of therapy that exist (e.g., psychoanalytic, psychodynamic, interpersonal, supportive, etc.), only one type of therapy has been found to be effective for OCD - Cognitive-Behavior Therapy or CBT. CBT generally results in a 50-80% reduction in OCD symptoms, and because patients are learning new life skills, these techniques generally do not suffer from the same relapse rates encountered with medications.
CBT for OCD involves educating the individual with OCD as well as important family members about the causes of OCD and the strategies that are helpful as well as harmful in overcoming the disorder. The most effective techniques involve Exposure and Response Prevention (ERP). This involves thinking of all the situations that provoke the obsessions (or worries/fears). The next step is to rank order how difficult it would be to do each of these things (i.e., “exposure“ to the feared situation) without engaging in the typical compulsions or behaviors that are normally used to alleviate the anxiety (i.e., “response prevention“). Usually, the most mild or moderate items are worked on first and the person with OCD will begin to realize that they do have control over their OCD and their anxiety does diminish. When these situations become easier, then the next item on the list is tackled until all situations are confronted.
Many people find it helpful to think about ERP as being similar jumping into a cold swimming pool. Often it is too scary to just jump right into the pool and many people might want to run away. This would be like confronting your worst fears all at once, and this is usually too difficult for most people. However, most people can first try putting their feet in the cold water, then they wait until that feels ok, then they might put their legs in up to their knees and then wait until that feels ok, and so on. Before they know it, they have the same result as just jumping in - it takes a little longer, but is far less scary and eventually they are swimming around in the pool and feel like the water temperature is just fine. This is usually how OCD fears are confronted too - a little at a time, then a little more, etc. In this kind of therapy, the psychologist and patient work together as collaborators to figure out where the right place to start is and what the next steps should be. Patients are also expected to work on these same practice assignments outside of sessions so that they will improve a lot faster and their improvements will generalize outside of the therapist's office to home, work, or school.
It is relatively common for individuals to feel like they can “get by“ with continuing to engage in their compulsive behaviors until their lives are limited to such an extent that the problem can no longer be ignored or tolerated. Until they reach this point, things can be very frustrating for family members, who are likely to be confused and irritated by the symptoms. Although frustrating, this can help you to better understand how terrifying the OCD fears are -- that the OCD sufferer is willing to go to such extremes to adapt their life to avoid contact with the feared situations.
In this type of situation, it is best for family members to become as educated as possible about OCD. This can be a big help to the OCD sufferer because you can help to educate them about their symptoms and help them understand that there are very effective treatments out there that can help. If your family member with OCD is still in denial about their problems despite your efforts to educate them, it is often useful for the family to consult with a psychologist who specializes in OCD for further help with this issue.