I have battled obsessive-compulsive disorder (OCD) for as long as I can remember, but for many years I kept my struggle hidden. From a young age, my intrusive thoughts were strange and uncontrollable. Because my 10-year-old self thought having OCD just meant being really clean, I didn’t know what was causing these thoughts. I thought I was evil, that I was going to hell and that I just needed to try harder to control my thoughts. I hated myself because I didn’t understand what was wrong with me.
I was 16 when I stumbled upon a list of symptoms of “pure O” OCD on the internet. One of the common obsessions listed was blasphemous intrusive thoughts. Shock and extreme relief rushed through me as I read the descriptions of obsessions I’d been struggling with in silence for years.
Now there was a reason for my thoughts. They were not an indication I was a bad person or that I had failed in some area. They were simply a symptom of OCD. They still scared –and continue to scare – me, but at least now there was a name for the glitch in my brain.
I had my first appointment with a psychiatrist a few weeks ago. As I sat in his office, my body felt like it was on fire. My heart pounded in my throat, my fingers twisted in my lap and tears triggered by panic waited just behind my eyes. Telling a man I had only met five minutes ago about the thoughts I couldn’t control, the thoughts I had lived with for the majority of the past 17 years, was beyond scary for me. He asked me questions about how long I’d been dealing with my anxiety, what my obsessions were, if I had images pop into my head (intrusive thoughts) and if I had to perform certain actions to make the thoughts stop (compulsions). He seemed to ask everything except the one question I was expecting:
“Do you like to be organized?”
He did not ask me about the state of my room. He did not ask if my closet was color-coded. He did not ask if my pencils were arranged perfectly on my desk and if all my notebooks matched.
Ten-year old me would probably have been shocked to hear I have OCD, because 10-year-old me was pretty sure you had to have a clean room to have OCD. Ten-year-old me would probably spend the rest of the day incessantly asking my parents if it was really true, if there was something really wrong with me — all the while not realizing that constantly asking for reassurance can be a compulsion of OCD. When 10-year-old me finally understood what OCD actually meant, she would be beyond relieved to hear her thoughts didn’t make her disgusting or evil.
Unfortunately, 10-year-old me didn’t get to hear this. She only heard the term OCD thrown around as a joke, so she spent the next six years believing she was worthless.
A lot of people don’t understand OCD comes in many forms. OCD can be washing your hands a hundred times a day, it can be constantly asking for reassurance, it can be silently praying in an effort to cancel out intrusive thoughts. And yes, some of those things can involve organization or cleanliness – but definitely not always.
Using OCD as a synonym for clean, anal or organized might seem harmless, but it is not. It keeps people from truly understanding the severity of the disorder and it keeps people like me from realizing what’s going on in their brain. If the misconception that OCD is a funny quirk hadn’t been planted in my mind as a young child, I might not have been so afraid of my thoughts.
In June of 2016, I decided I’d finally had enough. While I had been seeing a great therapist, unfortunately she hadn’t been enough to take down the monster of obsessive-compulsive disorder (OCD). This disease needed an army to stop it from plaguing my mind.
This is why I entered an intensive week-long program called exposure and response prevention (ERP) in order to treat my nagging, silently severe OCD. This agonizing creature has been inside my brain since the age of 8 or 9, hitting its peak severity at ages 16 through 20. At 20 years old, I was put on a few different medications, having reduced the anxiety, obsessions and compulsions greatly. However, it was never enough to banish it completely. In fact, during any stressful event or intense emotions, my OCD would spike to its originally severity for several days, and even despite my medication, I was still struggling.
It was in June, after a particularly severe spike, when I decided enough was enough. I was finally ready to put in the effort required to truly shut OCD down. Of course, OCD is a lifelong condition. So it’ll never be shut down for good, but I’m happy to say I’ve come pretty close since ERP.
ERP deals with an OCD-ridden person’s worst nightmare, facing their anxiety-producing obsessions without engaging in the comfort of tedious compulsions. I spent six days starring my worst thoughts in the face, re-writing narratives over and over and listening to my voice on a tape recorder until my obsessions no longer scared me. It was pure pain, but I’ve never done anything that was so worth it.
I spent the past two years half-assing (excuse my language) OCD treatment by not really attempting specific therapy aimed toward this disorder. My advice to anyone struggling with OCD is this: Don’t try to take the easy way out.
A treatment like ERP is incredibly challenging, but in the long run it’s worth it. Since ERP, I now know how to deal with my obsessions when they come (because of course, they still occur but with less intensity.) I still take my antidepressant to reduce the strength of the obsessions, but now I have the skills to fight them head on.
Those of us with OCD are often faced with the seemingly impossible task of telling loved ones we might, for example, have thoughts of harming them or others. We might fear contaminating our husband or wife, or perhaps abusing our newborn baby. While these thoughts are indeed intrusive thoughts and fears – meaning we would never act on them – it doesn’t make talking about them any less scary.
After I received my diagnosis for OCD, I tried coming out to my mum, but only managed to tell her a tiny fraction of what was actually going through my mind; it was honestly just a drop in the entire ocean that is my thoughts. Earlier this year, I revealed everything, including my biggest obsession that had haunted me since childhood: the fear that I might be a pedophile.
I’ve always expected everyone I’ve ever told about my OCD to run away, and every time I’ve opened up I have been completely wrong; telling people has only made my relationships stronger. On top of this, my guilt has lessened somewhat and by speaking out about my fears, I have actually come to learn how “normal” they are. I was sexually abused as a child, and later went on to obsess if I would become an abuser too. Recognizing what led and contributed to my obsessions helped me understand myself a lot better.
Understanding is just one part of the process though. The other, I believe, is acceptance.
I am still so scared of the possibility that I might harm a child that I have devoted my entire life to avoiding children. If I see a child anywhere, I either freeze out of pure fear or run in the other direction. My OCD is a severe case, not only because it was left untreated and diagnosed for over 15 years, but because I never ever spoke out about what I was going through. That is why I am advocating this OCD Awareness Week that we all come out to our loved ones.
That said, coming out about your OCD is a choice, not something the must happen, and this choice is entirely yours to make. It is a decision that requires careful thought, time and patience. You must consider if you feel emotionally strong enough to talk about your illness with others, whether or not you will be heard and understood.
So, let’s look at some of the steps you can take to coming out about your OCD:
No. 1: Using Someone Else’s Battle to Tell Your Story
If you feel you can’t talk to your family or friends about your own personal struggle with OCD, use someone else’s. Find a video on YouTube that explains what it is like from a personal viewpoint to struggle with OCD. There are so many talented vloggers out there, but my personal favorite is Kat Nicole. Kat makes of vlogs on all types of obsessions, but I personally related to her highly commendable video on sexual intrusive thoughts and harm OCD.
Another valuable resource are the countless number of articles out there on OCD. Perhaps you could read one to your loved one or even print out/send a copy to them by email or social media. Showing a video or reading an article to your loved ones is a fantastic way to open up a conversation about OCD without actually doing the talking yourself. Perhaps you could show the person a video and before opening up with your own struggle, ask them how they felt in regards to the video. This will allow you to get a feel for their level of understanding and give you the confidence you need to talk about yourself. If you see your loved one understands someone else’s battle, they may understand yours too.
A novel or a memoir is also a fantastic way to open up about your OCD, particularly if your loved one enjoys reading. After you’ve found a book you relate to, you could suggest it to your loved one, saying the book means a lot to you. Once they’ve read the book, you’ll have a unique opportunity to discuss it with them, bringing up your own struggles, should you feel the time is right.
Here’s a small list of books on OCD that I highly recommend reading for the purpose of sharing your story with others:
“Pure” by Rose Bretécher (Memoir)
“Because We are Bad” by Lily Bailey (Memoir)
“Being Me with OCD: How I Learned to Obsess Less and Live My Life” by Alison Dotson (Self-Help/Memoir)
“Every Last Word” by Tamara Ireland Stone (YA novel)
“Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder” by People with OCD
No. 2: Write Your Story Down on Paper
This was the route I took. I’ve been writing odd bits here and there about my OCD for years now – all post-diagnosis. I try to keep a daily journal, which helps me sort through my thoughts and understand myself better. I often read back what I’ve wrote the next day, and I can see very clearly, from a secondhand perspective, that what I live with is perfectly understandable. Writing gives me a therapeutic release, and as I am in control of the words, I always get to choose if and who I want to share them with. Many times, I’ve read out extracts from my journal to friends and family, and they have all been incredibly compassionate with me.
Just a few days ago, I read out my previously published article on The Mighty to my partner’s mother as a way of coming clean to her about my OCD. Reading my story out loud allowed for me to be heard the way I wanted to be heard. Having your story in front of you as a kind of script is a real confidence boost because you know exactly what you’re going to say and how you’re going to phrase it, without the need for rumination, which is already a massive part of OCD.
No. 3: Bring Your Loved One to a Therapy Session
Obviously this one only works for those already in therapy, but if you are able to use this method, it can be a very positive one. Your therapist, if s/he agrees with this method, is likely to steer the conversation where it needs to go and will be there to answer any of your family member’s questions. This route is particularly useful for those who are struggling to talk about their diagnosis outside of their therapy sessions. Bringing in a loved one to such a safe, familiar and comfortable space can hopefully allow you to walk away feeling a little more positive about and confident about your recovery, with your loved one now by your side.
I strongly believe a lot of good can come from opening up about our struggles — not only in terms of self-acceptance but also in healing relationships we may have lost in the past due to our guilt or fear of not being understood.
This OCD Awareness Week, if you can do one thing for yourself, try to make it this: begin the journey into self-acceptance by reading and learning about your disorder. Enlighten and educate yourself so one day you can tell your story, should you wish.
I’ll leave you with this gorgeous quote from Haruki Murakami’s “Norwegian Wood.” It’s not quite as magical or as instant as this, I’m afraid, but it’s a damn good start.
“What happens when people open their hearts?” “They get better.”
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It’s OCD Awareness Week. I wondered what I could say in this post that would be new or unique, yet still meaningful. I didn’t want to rehash old trains of thought or repeat myself yet again, so I started to think about what OCD awareness meant to me. What should it mean?
Obviously, those of us who are diagnosed with obsessive compulsive disorder are aware of OCD. Our immediate families are likely aware of OCD. Harking on about OCD awareness to people in those categories might be preaching to the choir.
So, besides increasing awareness of OCD to everyone (which could really help cut down on stigmas and misuse of the term “OCD”), I think the most important people who need to be reached during OCD Awareness Week are the closeted strugglers. The people who know something isn’t quite right but aren’t yet diagnosed. The individuals who think OCD is just hand-washing, fear of germs, or checking and therefore don’t think they could have OCD under those strict definitions.
Those are the people I want to make aware.
Because OCD isn’t just hand-washing, fear of germs, or checking. Yes, it can be those things. Contamination made me realize I had OCD; I was one of those people who wasn’t aware for a long, long time. But the first time I sat in group therapy and listened to other people share their stories, I experienced “awareness.” I had my “aha” moment. I have had OCD for so long, I thought. I just didn’t know what it was. I thought it was anxiety or perfectionism or just me. But it was obsessive compulsive disorder.
Refusing to jaywalk, making sure I stayed under the speed limit or else, convincing myself I was going to have to pay a fine or go to jail for burning CDs, worrying about copyright issues and trying to fix things myself, having intense fears about whether or not I graded my students fairly in the college courses I taught… These were all just symptoms of a greater problem. If I had known about OCD’s long reach way back then, maybe I would have known how to fight back. Either way, I wish I had known.
I received a request to answer some questions for a class recently, and I really enjoyed thinking about and answering those questions. One of them was:
Do you think OCD needs to be controlled? Why or why not?
I wrote that I do think OCD needs to be controlled, because if you are not controlling it, it can begin controlling you.
I remember after one therapy session, I suddenly remembered the person I used to and wanted to be. For so long, OCD had been telling me what I could and couldn’t do. It was like I had been living in an abusive relationship with my own mind, and suddenly I remembered my old self. It was incredible. I realized if I could control the OCD, I could be that person again. I could wear vintage clothes. I could do the things I wanted to do. I could go shopping without hand sanitizer. I could write and publish things. I could be a better mom and wife. I didn’t have to live in fear and anxiety.
People have varying levels of OCD, but it’s been my experience that while OCD can wax and wane, it tends towards waxing when not being controlled. Even now, if I slip up or stop being so diligent, I can feel the OCD gaining a foothold and trying to reinsert itself into my life fully. So yes, engaging in cognitive behavioral therapy can be so helpful to manage OCD.
Why awareness matters
I believe that is true. I believe in making the various nuances and types of OCD known to others, and then making them aware that there are treatments available. I believe if we can educate people, maybe they can reach someone who is struggling and say, “Hey, maybe you have OCD. You can get help for that.”
It isn’t a hopeless condition, but it can sure feel that way when you don’t know what you’re up against. And it can easily get that way if you let it go unchecked. For these reasons, OCD awareness is so important. I hope you can help increase awareness in your own way as well. Every little bit helps.
This week is OCD Awareness Week! As someone who has lived with obsessive compulsive disorder (OCD) almost my entire life, I wanted to write a quick fact sheet about the disorder, and hopefully, do my part to increase awareness. If you have just two minutes to spare, continue reading to learn more about what OCD really is.
What is OCD?
OCD stands for obsessive-compulsive disorder. This is a mental health disorder characterized by a cycle of compulsions and obsessions. Obsessions are unwanted, intrusive thoughts, images or urges that increase anxiety and distressing feelings. Compulsions are behaviors an individual performs to try to reduce this anxiety or distress.
Is it just hand washing or counting?
Obsessions and compulsions can be incredibly diverse, adapting to each individual’s environment and the situations they encounter. Common obsessions include, but are not limited to:
Fear of certain unlucky numbers or colors
Fear of contamination with germs or chemicals
Fear of losing control and harming others
Excessive concern with morality
Concern with doing or remembering something perfectly
What is the difference between having OCD and liking things a certain way or being organized?
The important thing to remember is that the “D” in OCD stands for disorder. To be diagnosed with OCD, you must be experiencing obsessions and performing compulsions for at least an hour a day, though in most untreated cases it is usually several hours a day. Everyone experiences weird intrusive thoughts, and everyone performs compulsive behaviors at times. OCD is different because it is so consuming that it becomes debilitating and interferes with the individual’s academic, work and/or social life. It causes an immense amount of stress and makes it difficult for the individual to function or spend time doing what they care about.
What’s the harm in using the term “OCD” loosely to refer to behaviors that are not actually part of a mental illness?
It perpetuates misconceptions about the disorder, which indirectly increases the time it takes for people with OCD to get diagnosed and start treatment. The average amount of time between onset of symptoms and appropriate treatment is 17 years. Yet, the earlier someone begins treatment, the better the prognosis! We can help close that gap just by changing how we talk.
It trivializes a serious and debilitating disorder.
It stigmatizes mental health, rather than promoting an inclusive, compassionate environment.
Here are some awesome, alternative words you could use:
What should I do if I think I have OCD?
The International OCD Foundation is a great hub of resources. Additionally, if you are in college, then you can make an appointment at your school’s counseling center or reach out to your RA. Please, reach out to someone you trust!
Where can I learn more?
For more information visit The International OCD Foundation’s website. Remember, anyone can be an advocate for mental health. You don’t have to have a mental illness yourself. Take time to reach out to a friend! Speak about therapy as you would any other doctor’s office. At least think twice before using the words OCD, bipolar, post-traumatic stress disorder (PTSD) and other mental illnesses when that’s not quite what you mean.
If you don’t know someone who has obsessive-compulsive disorder (OCD), you might only think of stereotypes when you hear the words “OCD.” Do you imagine someone meticulously organizing his closet? Lining up items on her desk just right? While this is what OCD can look like, it’s a pretty shallow representation of what the disorder actually is — and underplays what’s really going through a person’s head.
In honor of this year’s OCD Awareness Week, we teamed up with the International OCD Foundation to ask people in the OCD community to tell us one thing they wish people knew about this sometimes debilitating and often misunderstood disorder.
Read what they had to say. It might make you think twice before calling that habit of yours “so OCD.”
1. “OCD can destroy relationships, take away your dreams, hopes and plans, and is a true struggle to live with. It’s like being a prisoner inside your own brain.” — Giovanna C.
2. “I wish more people understood how OCD isn’t a set of pet peeves, but actually uncontrollable thoughts and feelings.” — T.J.R.
3. “I wish people understood how invalidating it is when they say ‘I’m sooo OCD.’ Obsessive-compulsive disorder is real and valid, and I’m hesitant to talk about my experience with OCD because I fear not being taken seriously. I’ve finally started proper treatment for my OCD, but I still struggle. It can be debilitating, and how much it affects my life honestly just makes me cry sometimes; I feel like I can’t fully enjoy life and do the things I want because my anxiety holds me back from doing so.” — Gessie P.
4. “OCD is a daily struggle. Some days people with OCD are stronger than other days. That doesn’t mean we don’t try to overcome our daily struggles. I also wish more people were willing to accept an invisible illness such as OCD as no different than an illness that is visible. We do what we have to beat the odds.” — Erin C.
5. “As a parent of someone with OCD, I wish people knew how all-encompassing OCD can be, how it can take over your life before you find good treatment — it truly affects quality of life, for the one struggling through it and the ones living next to it. I also wish more counselors/therapists were familiar with it — it can be hard to find someone who knows effective treatment (like exposure and response prevention)… it took us four years.” — Rosemary H.
6. “OCD compulsions have a lot of complex thoughts behind them. For example, someone without OCD sees someone washing his or her hands until they bleed. The observer would most likely think, ‘That person must be germaphobic.’ In reality, the person with OCD is washing repeatedly because they feel that if they don’t, their friends and family will get into horrible accidents and die. The person with OCD logically knows that hand washing cannot possibly have that effect, but resisting the compulsion will make their anxiety skyrocket.” — Amanda N.
7. “I wish people understood how devastating it is, both to those who have it and to their families. And that the person who has it can look ‘normal’ to outsiders. And it cycles. People who have OCD can have times where they are succeeding in the fight and then plunge back into the thick of it.” — Kylie S.
8. “OCD has been described as the doubting disease, but does society know this? Doubtful. We are not taking pride in a neatly organized desk; we are not fussing over aesthetically pleasing symmetry; we do not describe OCD as a quirky personality trait. What society doesn’t understand is that people with OCD are plagued by doubt. We are doubting whether we made it home without hitting anyone with our vehicle; we are doubting whether we can be left alone with a knife without stabbing ourselves; we are doubting whether we are morally good people. If OCD was renamed the doubting disease, would people start saying, “I’m sooo DD”? Maybe then people would make the connection that OCD is a disorder. Maybe then people would remove OCD from their daily vocabulary. Maybe then it would click.” — Melanie L.
9. “OCD isn’t something you just have to deal with; you can effectively and successfully manage it with a supportive care team. I wish people understood they don’t need to be ashamed.” — Roxanne B.G.
10. “I wish people knew how incredibly brave it is for individuals with OCD to participate in exposure therapy. As a therapist, I am so honored that my clients place their trust in me and the process enough to participate in incredibly terrifying, yet gratifying exposures.” — Maegan C.J.
11. “OCD affects not only adults, but kids too. I wish teachers knew how deep OCD can run. Many people think it’s just hand washing, collecting or counting things all the time. When I watch my son struggle because of deep intrusive thoughts, I pray his teachers will have the knowledge someday to understand how OCD can affect their students in a classroom setting. Knowledge is power.” — Eileen S.
12. “It isn’t quirky or cute, a ‘fun’ aspect of someone’s personality or something they are just feeling on a given day. For many, it is an everyday struggle — debilitating, infuriating, exhausting, painful and disruptive. It is classified as a mental illness, but can manifest as both physical and neurological. Many people who have it are smart and can be ‘high-functioning’… and likely very good at hiding their compulsions from others.” — Erin B.
13. “OCD can absolutely have physical impact and manifestation; it’s not just all ‘in your head.’ Anxiety can cause and be caused by physical sensations and experiences. There’s a whole category known as sensorimotor obsessions.” — Roxanne B.G.
14. “Obsessive-compulsive disorder is not a choice, and it’s not something to joke around about.” — Jessica A.
15. “My son who lives with OCD and Asperger’s said ‘it’s like I’m in jail and my OCD is the bars.’ I want people to know it is real and debilitating, and the entire family lives with it. This is a misunderstood disorder.” — Kristin R.
16. “The covert side. A lot of OCD is intrusive thoughts. Since people can’t see, they think nothing is wrong — and those like me with OCD are experts at hiding at.” — Samantha M.
17. “I wish people understood they don’t have to understand to be helpful and supportive. I know people who think that because they don’t understand OCD, they can’t help and support me. I don’t need you tell me you understand or you can relate. I only need you to tell me that you’re here for me.” — Hannah L.
18. “I wish more people understood how out of control it feels to know your thoughts are completely irrational, but that knowing this doesn’t help. Your mind is like a broken record you can’t turn off — the noise is constant!” — Jamie C.
19. “My child who has OCD said, ‘I want people to know OCD is not the stereotype people know it as. It can be [horrible] anxiety, it can also be incredible strength and perseverance. OCD isn’t just neatness. It’s messy, it’s hard, but it’s also rewarding. OCD is me, but I am not defined by my OCD.’” — Vanessa T.F.
20. “Knowing that a fear isn’t ‘logical’ doesn’t lessen the anxiety.” — Natalie K.
21. “I wish people realized how strong we are and how powerful the mind can be.” — Kristi M.
22. “Compulsions don’t have to be visible. Some of the hardest compulsions to deal with are overthinking and mental rituals.” — Daniel G.
23. “It’s not cute to have OCD. It’s not trendy to have OCD. It’s painful. It’s devastating. So please think before you speak.” — Marcie P.