How to Explain What Living With OCD Feels Like to Friends & Family
Reviewed By Dr. Jamie Feusner, MD
•6 min read
Mentioning that you live with obsessive-compulsive disorder (OCD) usually leads to a mixed bag of responses, despite the condition being ranked as a top 10 most disabling condition by the World Health Organization. Seemingly half the people you share it with will nod their head in silence as if you mentioned that you had brown hair, while the other half will jokingly make a mildly offensive comment such as: “my spouse is super OCD, but it leads to a really clean house, so I love it!”
Although the intent isn’t malicious, when people mislabel behavior as OCD or make ignorant comments, it contributes to the overwhelmingly common issue of misdiagnosis and mistreatment of OCD. This mislabeling causes people with OCD to suffer from more severe symptoms — in some cases, even taking their own life.
What if instead, every person understood what having OCD truly meant? Take Type 1 diabetes as an example. When people say, “I have Type 1 diabetes,” instead of getting a chuckle from the crowd and hearing, “You know I’m a little Type-1 myself,” people may say, “I can’t imagine how hard that’s been on you.” When a person mentions they suffer from OCD, what if the reaction were universal sympathy and understanding of the years of distress that inevitably come with OCD, just like how they would react for Type 1 diabetes or most other conditions?
Creating such a world for the OCD community is possible, but it will first require society to understand what it means to suffer from OCD. Therefore, I’d like to take you through the following scenarios, in hopes that it sheds light in what it’s like for many people:
You hear horrible news that there was a major accident at a place where your child, spouse, or parents were headed. You contact your loved ones repeatedly, but you get no reply. What would you do?
The “what if” thoughts begin racing in your head and panic is felt throughout your body. You are struggling to deal with the uncertainty that your loved one may or may not be in trouble. This leads you to call a couple of close family members to ask for help, in hopes that they will reassure you that everything is ok. They don’t answer either.
Panic ensues, causing you to analyze every potential detail of how your family may have traveled to the location, in the hopes of finding a way to logically believe that they’re doing fine. Anxiety is raging, and you can’t function because of the thought that your loved ones were the victims of this major accident. Finally the phone rings, and it’s your family. Everyone is fine – so your anxiety can finally dissipate.
What if instead that anxiety not only continued, but grew, and you became stuck in a state of nonstop uncertainty? No matter what you did, who consoled you, or how you disproved the thought, the feeling that something bad happened to your family continues just as strongly, even if you logically knew that the feeling was ridiculous.
All of a sudden, the emotional side of your brain begins to feel disconnected from your logical side, when previously you never had an experience where they were out of sync. It would feel terrifying.
That’s what people with OCD experience on a daily basis.
While watching the nighttime news, a person is spotlighted for being a sexual deviant. You view his mugshot and keep listening to the news anchor, but as the segment continues, you become increasingly angry.
Not only do you find his perverse actions disgusting, but you’re also infuriated by his cavalier response to his many offenses. The circumstance causes you to quickly change the channel and turn on your favorite comedy to forget about the uncomfortable news you heard.
Or, what if you could never change the channel? Additionally, what if you replayed the segment in your head repeatedly, to purposefully try to find 100 percent certainty that you weren’t like the predator on TV, due to how uncomfortable it made you feel?
Taking it one step further, what if you identified one potential item of uncertainty while replaying the events – a feeling in your stomach that made you question if your reaction was rooted in full disgust or only “nearly-full” disgust? You begin to feel extreme anxiety from being unable to tell if you felt “fully disgusted,” and you begin to decipher the thought further to guarantee that you had the right level of disgust, to completely guarantee that you aren’t like the guy on TV.
However, the more you analyze the thought, the more questions emerge over time. The more questions arise, the more anxiety you feel. Now, you’re beginning to question if you really know yourself and whether you can fully trust your brain. The anxiety heightens as the questions broaden in scope.
Your logical brain and your emotional brain feel out of sync, and you become beyond terrified, since you don’t want to be a monster. OCD has misattributed the perceived uncertainty for being a truly alarming situation, even though you logically understand that your thought process is completely irrational. The emotional response mirrored that of a real situation, ultimately causing confusion.
You’ve just entered into the best romantic relationship of your life. Although it’s been over four months, every date keeps getting better and better, to the point where you don’t know what life would be like without your significant other in it.
Eventually, you begin to move in with this person on weekends, and call in sick on Fridays just to make the weekends a little longer. You cook together, work out together, watch movies together, and begin traveling together. By societal definition, you are in love.
One night, while browsing your Facebook feed, you stumble upon an article that talks about the short-term nature of love. It states how humans aren’t built for monogamy and that love always fades. About halfway through the article, you begin researching other articles to disprove the writer, given you want to make sure that you completely love your partner and nothing could get in the way. Eventually, you find the exercise futile and you spend time elsewhere, as you realize that everyone is entitled to their own beliefs.
Or, imagine if you didn’t let it go. To satisfy the need to find the right answer and disprove your fear, you begin asking your significant other to describe what it is like to be with you to ensure that you are still in love. Now, taking it a step further, what if you spent hours each day over the course of months scouring Google to truly understand how love works so that you could sit with the certainty of knowing that the amazing relationship you had would stay intact and to prevent anxiety from crushing you each day.
Over time, you spend more time deciphering your relationship to reassure yourself that you’re still in love than actually enjoying it, ultimately creating an unhealthy situation that drives your loved one away. You try to stop searching for answers, but the anxiety only increases since it’s difficult to accept the uncertainty surrounding the manifestation of love. It’s a vicious, lose-lose situation that people with OCD know all too well.
The main parallel observed among the three situations is that people with OCD typically know that their fear is irrational, but part of their brain still responds as though it were completely rational. This makes it hard for people with OCD to discern fact from fiction, ultimately leading to more doubt and anxiety.
The cause is actually neurological, believed to be due to environmental and genetic factors. With appropriate treatment though, people can rewire their brain’s structure due to its plasticity. That’s why many people with OCD achieve life-changing recovery in just a short amount of time. When doing therapy, brain regions actually change shape, activity levels, and how connected they are with other regions, and people stop feeling as if their emotional and logical gears are out of sync, since they learn how to accept uncertainty.
That’s why my team and I started NOCD – to make it easier for people with OCD to access evidence-based treatment and rewire their brain. If you or a loved one is interested in getting therapy, be sure to give us a call or check out why we’re different.
You can do therapy with a licensed therapist that specializes in OCD, and get support from peer communities and therapy tools when your provider isn’t available. If, for any reason, we’re not the right fit for you, we’d recommend that you check out the International OCD Foundation website. Another great website is Made of Millions, led by Aaron Harvey. He uses his lived experience with OCD to help others navigate treatment.
At the end of the day, it’s hard to truly get better without support from family and friends, even if you have the right resources and treatment. Therefore, if someone isn’t truly “getting it,” please feel free to share this article. Hopefully, it can be a good conversation starter.