9 women reveal what it’s really like to live with obsessive-compulsive disorder
There are many misconceptions about mental illness, and in popular culture, obsessive-compulsive disorder (OCD) in particular has often been portrayed incorrectly (at best). As a way to help educate people on what living with OCD is really like, HelloGiggles spoke to nine women who cope with this disorder. Their words will not only give you a better understanding of what living with OCD entails, but if you have OCD (or think you might have it), these women may help you feel less alone.
The National Institute of Mental Health (NIMH) notes that OCD is a common and chronic condition affecting 1.8% of American women and less than 1% of American men, and there is misinformation and stigma surrounding OCD everywhere. Yes, some with OCD do have rituals with a particular focus on cleanliness. But the obsessions and compulsions that characterize OCD aren’t limited to that, as these women make clear.
NIMH reports that in general, people with OCD can’t control their thoughts and behaviors. And rather than experiencing joy from conducting rituals, they are performed in an effort to stop anxious feelings. NIMH also adds, “If left untreated, OCD can interfere in all aspects of life.”
These women with OCD opened up to HG to help spread awareness about this misunderstood condition. They serve as proof that OCD is so much more than what has been portrayed in the media.
1Like I’m being suffocated from within.
“My life with perfection OCD is a 30-plus-year-old war between the disorder and my logical, thinking mind. Every day is a new battle — same war. Checking, rechecking, and touching something until it is juuuuust right. Endless mental lists that must be completed, or my mind will refuse to rest or give me a tiny sabbatical for the evening. Once each compulsion gets checked off, then all is temporarily well in my world. But wait, just one minuscule change in that mental plan and in the blink of an eye, my life is shattered. Not literally, of course, but to this OCD-having chick, it FEELS like nothing could be worse. Logically, I KNOW there are real tragedies in the world and this isn’t one of them, but in that moment, it feels like I’m being suffocated from within.
Sixteen years with my husband and he still doesn’t know a fraction of what I deal with. It’s my burden, not his, and he doesn’t deserve the headache of it all. My parents chose to ignore it growing up. I keep most everything about this to myself. No one really knows my fight against this disorder, and I accept that. Most people don’t understand it and are therefore unable to relate to it, so keeping it mine is easiest. OCD, for me, is tedious, annoying, isolating, debilitating, and — most of all — exhausting. I put forth constant effort to come to an impossible and unforeseen end against an insatiable disorder. And I lose. Every. Single. Time.”
— Amanda, 37, Ohio
2I didn’t know how to exist without OCD.
“Something that is really fascinating to me about my OCD is that it keeps me from forgetting anything. I have memories going all the way back to my toddler years. Until I was diagnosed at 21, I thought that OCD was only about cleanliness and organization. I had an extreme fear of germs, to the point where I would wash my hands dozens of times per day, but I didn’t think that had anything to do with having OCD. I found out that not being able to wear the same clothes at home that I had worn in public and inspecting all of my silverware in great detail before using it was, in fact, severe OCD.
When I was diagnosed, I wasn’t even searching for treatment for my OCD. I went to Eating Recovery Center to be assessed for an eating disorder that I had been struggling with for a few years. My intake assessment was done by a woman who asked me if I had ever been diagnosed with OCD. I was really confused, and said no. A few weeks after starting treatment for my eating disorder, I was sent to inpatient care at a nearby hospital. I went through heavy psychiatric testing and when I was discharged, I was given a diagnosis of OCD.
I tried three different clinical programs after being diagnosed that were specifically meant for OCD and body dysmorphic disorder (BDD) treatment. Unfortunately, I did not find success in any of them, as my case of having the comorbidity of OCD, BDD, and an eating disorder is fairly rare and not many clinicians specialized in all three areas. I decided to take action on my own. I dedicated all of my time to understanding what was OCD and what was actually me. Over time, I found that I didn’t know how to exist without OCD. I found that almost every single thing I did was motivated by my obsessions and compulsions — from how I washed my face in the morning, all the way to saying ‘I love you’ to my loved ones before going to sleep at night.
In order to make changes, I spent a lot of time on my own. I read more books than I can count on OCD, from clinical perspectives to personal memoirs to medical journal entries. I bought workbooks and held myself accountable for filling them out. I subjected myself to high levels of anxiety and fear to get my brain ‘unstuck.’ To manage my OCD, I had to show myself that not listening to it would not ruin my life. After over a year of dedication to this, I can say that it saved my life.”
— Dena, 23, California, Eating Recovery Center alum
3Part of my brain is running through a scenario to decide if whatever I did was just right.
“For me, daily things like showering, laundry, and moving between rooms are a struggle because I fear cross-contamination between activities/locations. I’m aware that it has no basis in reality, and I can differentiate between real dirt and OCD ‘dirt,’ but the level of anxiety involved is difficult to fight off. It’s difficult to maintain relationships. Because although I’m often participating in a conversation or activity, a part of my brain is running through a scenario or memory while trying to decide if whatever I did was just right. Or if I should go wash my hands again. Or — in bad cases — shower again.
Anxiety also makes me snappy and sometimes controlling. My compulsions are extremely time-consuming, since I shower twice a day, and hand-washing also involves washing up to the elbows and spot cleaning any part of my body that may have made contact with something my brain has deemed dirty. I change clothes, on average, two to three times daily and change towels way more often than necessary, leading to more laundry. My water bill is crazy expensive. I’ve struggled in the past with maintaining employment, and have actually been singled out by managers who guessed about me (‘I think you might be a bit like Howie Mandel…?’).”
— Sarah, 29, Canada
4It keeps you from doing things that you love.
“The first time an intrusive thought came and got stuck in my head, I was 15 years old. I couldn’t stop thinking about how fire was going to destroy my home if I didn’t touch the oven six times to the right and six times to the left. So to avoid the anxiety that uncertainty caused, it became a routine I’ve stuck to until this day.
At 18, just before starting college, I convinced myself I was a criminal. I thought I was a murderer, so I started to avoid knives because I was completely sure I was going to stab my family. I pictured headlines with my name and the word ‘murder,’ and I even came up with an escape plan. I was terrified and all I wanted was to be tied to my bed so I couldn’t sleepwalk and unconsciously kill people (or myself).
I wash my hands too many times (sometimes until they hurt). I spend hours checking that everything is unplugged, off, or closed. I move my head in very strange ways that make me feel embarrassed. And I hate being touched, which makes people think I’m a terrible person. I cannot control these things even though it’s what I’ve been trying to do for many years. OCD is not fun, it is not ‘quirky,’ and it is not ‘a cute trait.’ It damages your social life, it keeps you from doing things that you love, and sometimes it can even make you afraid of life.”
— Daniela, 21, Chile
5A few compulsions have basically become a part everyday life.
“Every day can be different. Sometimes new rituals sneak in, but may go away or may even trade out with other rituals. Being stressed or anxious makes this worse. A few compulsions that have basically become a part of my everyday life include:
- Checking the oven and stove multiple times to make sure it’s off. Even if I don’t use it, I think that I could have accidentally bumped it and turned it on. Part of this ritual also includes making sure the doors are locked.
- Making sure the washer and dryer are turned off and closed all the way. I think if the dryer isn’t turned off, it’ll somehow get too hot and start a fire.
- I probably hit the lock button on the remote to my car about 20 times or so each time I lock up. I even have to check to make sure the windows are up, and literally have to look at each window.
- This is a ritual I had in college, it stopped for a while, and now it’s back. I have to make sure there are 20 cards in my wallet, and I have to check that twice, at least. If I mess up counting, it’s a few times more.
- For toilet seat covers in public areas, I usually throw out the first two and then use the third one. For toilet paper, I have to rip off some and throw it out before using any. I find that the person before me may have touched the toilet paper and it’s dirty, so I need to be sure I’m getting something cleaner.
When I was younger, I had other rituals — even a tick in 6th grade into 7th grade. I remember my very first ritual included thinking everything had an itch and I had to scratch it.”
— Brittany, 30, California
6Like living with two separate brains.
“Living with pure OCD is almost like living with two separate brains — one of them creating thoughts that are so wildly outside the realm of who you truly are, while the other is constantly firing back, trying to cancel out the negative thoughts with what you know to be the truth. For the past six months, my brain has operated like this almost 24/7. It’s exhausting and extremely uncomfortable.
OCD is rarely spoken about because there typically aren’t any outward signs — all compulsions are unseen because they’re happening inside your mind and those who suffer are usually afraid to speak about what they’re experiencing. While it’s troubling to navigate your day with so much happening inside your mind, there are steps to recovery and I’m confident that I’m on my way there.”
— Kate, 23, Florida
7I developed hideous 24/7 obsessive thoughts.
“When my OCD symptoms were at their worst, I roped my partner into colluding with them. He inadvertently became my enabler. This was, of course, a terrible idea. He desperately wanted to help me. At the time, undiagnosed and panic-stricken, it seemed like he was helping. I had developed hideous 24/7 obsessive thoughts that I would somehow ‘go crazy’ and rush outside our flat to injure animals. Dogs on leashes, cats in the street, whatever; it didn’t make sense, but it sure as hell felt 100% real. I was terrified. I love animals; I don’t even eat them or wear them! So what sort of violent monster was I turning into?
I made my partner watch me closely to check that I wouldn’t murder animals. When he wasn’t there, I made him literally lock me inside the flat. I tried only to leave the flat with him to watch me. I asked him, over and over, to reassure me that I wasn’t capable of such deeds. And if I ever had to travel alone, I carefully counted out only the coins for train fare, and sweated all the way to the station until I paid and rid myself of money that might be used to buy things that hurt animals.
Needless to say, this was no way to live. After a suicide attempt, I finally got help, got diagnosed, and got the therapist’s assistance helping my poor, confused partner find other ways to support my recovery that weren’t enabling. We celebrated our fourth wedding anniversary last week, cheerfully petting the animals at a local sanctuary. I’m now almost symptom-free.
Of course, OCD’s sheer irrationality would’ve been funny if I hadn’t been so terrified at the time, but the joke was on me. Our beloved longhaired cat was sitting inside the flat with me, oblivious, the whole time.”
— Jane, 30, U.K.
8A brain that cannot be tamed.
“OCD is a brain that cannot be tamed. When I’m at my most anxious and want nothing more than to live in the present, to be mindful, I lose control and spiral. My thoughts take an abrupt left turn. My OCD causes me to repeat certain worries in my head as I work to wrap my mind around a situation. This often requires me to live in the past as I simultaneously look to the future. Though OCD differs from person to person, this is the best way I can describe my experience: OCD is an attempt to maintain control, with a brain that cannot be controlled, in a world that cannot be controlled.”
— Anna, 23, California
9Every day is a struggle.
“For me, every day is a struggle. I feel like I have lost 10 years of my life because I have been anxious every second and unable to enjoy anything I have experienced. My biggest problem is with obsessive thoughts and feelings that I know other people do not experience. It could be the most horrible things that keep popping up in my head and not going away. Thoughts about hurting others and myself, incest, and disasters such as fires and terrorist attacks. I have found there is really no way to get rid of these thoughts and I just have to take it. When my anxiety subsides, I can be very happy and make people laugh.
My teachers have always been fascinated by my abilities and they’ve had very high expectations of me. I feel like I have failed them and myself as well, because I can never do my best. I can never sit down and think clearly about my school work. One minute I am doing so well and feel hopeful about my future, and another I am having a panic attack and screaming [in] pain.
My life has just been an endless series of days where I have to wake up and suffer, followed by equally endless nights filled with obsessive thoughts and rumination. Every day I feel ready to give up and end my life. But I am not depressed and I gather the strength to continue.
I have somewhere lost the ability to feel any other emotion than fear and anger. I feel bad for not reacting to things I should react to — for not being sad when my lovely grandmother died or for not feeling happy when my sister got married. I feel guilty and anxious because my family, friends, and teachers do not deserve this. And neither do I. But my anxiety is all I have, and I honestly don’t even know who I would be without it.
When I found out I had OCD, it all made sense. But it hurts to know that every aspect of my personality are just traits of an illness. It turns out that I don’t really have any hobbies, they are just compulsions to reduce anxiety. Studying, organizing every minute of the day, and working out are just compulsive. Therapy has not helped me and the doctor doesn’t know what to do anymore. I have now abandoned my former ‘perfect’ lifestyle, but still hoping that things will turn around someday.”
— Maja, 19, Sweden
While people joking that they have OCD has become shorthand for being very particular, these women are reminders that OCD is not something to make light of. Instead, obsessive-compulsive disorder is a serious mental health condition that you should seek help for if you think you may genuinely have it. And there’s nothing to be ashamed of, since these thoughts don’t define who you are.
These interviews have been edited and condensed. Some names have been changed to protect the privacy of individuals.
If you or anyone you know is dealing with thoughts on suicide, you can reach The National Suicide Prevention Lifeline 24/7 at 1-800-273-8255. You are not alone.