23 Things You Should Know During OCD Awareness Week

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.