My OCD is who I am – please don’t make me hide it

Disclaimer: this post is not medical advice, it’s not meant to serve as medical advice. It’s simply a tool to raise awareness about OCD. Always consult with a medical expert regarding anything that may concern you. Never take medical advice from blogs, articles, etc. This post is not directed at any individual – it’s a summary of many many incidents. It also does not serve as my judgement of anyone’s character – before I became personally aware of the ideas mentioned in this article, I was guilty of much of the same.

 

Just about a year ago, I was diagnosed with OCD.

I went through months of CBT (Cognitive Behavioral Therapy) which worked wonders, increasing my functioning dramatically, and allowing me to get in touch with myself in a way I never did.

The truth is, it’s part of who I am.

 

Yet, most people I know don’t know this about me.

I don’t exactly hide it, but it’s not openly broadcast, like my deep brown eyes, my perpetually-post-baby belly, and my cynical-but-sensitive personality.

I’ve mentioned it to some people, casually. And each time I am terrified of the reaction.

 

Yet my OCD is a key component of who I am. Actually, my diagnosis was almost a relief, an explanation of so many things about myself that I never understood.

It explained why not having “my seat” on the bus would sometimes throw off my entire workday. And why I’d walk ten minutes, even twenty, to get on at an earlier stop. Or why I created drama so many times as a teen for not being able to give up my seat at the table for a guest.

It explained sleepless nights, obsessive parenting behaviors, and some of my lack of productivity due to compulsive behaviors.

It explained some of my extreme frugality, even when our financial situation stabilized. It explained me over-validating every purchase that wasn’t 100% necessary, sometimes to the point that it kept me awake at night. It explained my inability to throw anything out, because one day I might need to spend money on it.

It explained so many small things that I can’t possibly list here.

 

But even more so, it helped me tackle some of my disturbing behaviors. It got me in touch with a side of me I didn’t know existed.

And it became a key part of my existence.

Yeah, sometimes, when I introduce myself, I feel like saying “Hi, I’m Menucha, and I have OCD”. Okay, I know. That would be waaay too awkward.

But why is it that even when it would come up naturally in conversation with someone I know do I feel terrified of their reaction if I’d mention it?

 

 

I feel like the person I’m speaking to likely falls into one of the following categories:

  • People who still either stigmatize mental illness or feel uncomfortable talking about it
  • People who don’t understand mental illness and think it’s a personal choice
  • People who stereotype and misunderstand mental illness – they think they know it but they don’t.

One typical reaction when I “expose” myself as having OCD is “so is your house like really freaking clean?”

No! It’s not! It looks like two little monsters decided TODAY to see what they have hidden in their “valuable property” drawers. It looks like the home of a family of creators. It looks like the residence of a busy work-at-home-mom with three hours of cleaning help a week. Those three hours happen tomorrow…

 

Another typical reaction is a quick glance at my hands. Spoiler alert: I’m not a hand-washer.

 

 

With OCD, as you can see, the problem often goes hand-in-hand with the fact that people glorify OCD. “I’m so OCD about xyz”.  You’ll rarely hear people see “I’m so schizophrenic, I’m so bipolar, I’m so Anorexic” – at least not decent people.

And while you will hear people say “I’m so depressed, I’m so anxious” – characteristics that present in mental illnesses – it’s never (or rarely) in a positive context. It’s almost always used correctly, stating actual symptoms, that if these would present a certain level of dysfunction, would possibly be diagnosed as a disorder.

Translate that to OCD symptoms. “I’m so obsessive. I’m so compulsive. I’m obsessing over this. These actions are compulsive and I feel like I can’t control them”. Does that sound like the culturally accepted statement of “I’m so OCD”?

I’ve even seen posts, memes, articles on “things that would bother anyone with OCD”. Um, no. They would bother people who like symmetry. Not everyone with OCD even cares about symmetry.

 

All of this breeds an ignorance particularly with OCD that makes it so much harder for me to talk about my OCD.

 

OCD is so commonly misunderstood. Many people think that the core of the illness is a need for symmetry or cleanliness.

In reality, OCD is about intrusive thoughts and the things we do to “solve” them.

For many the intrusive thought is related to cleanliness, fear of germs, and such. My intrusive thoughts are more along the lines of something terrible happening, some unforeseen tragedy, as well as less “catastrophic” things such as being late, overspending, not affording something in the future, etc.

 

Another very difficult response I often have to deal with is the “I do that too, I’m also like that”. Most mental illnesses have a spectrum and when it reaches a certain level of distress or dysfunction it becomes a disorder. So anyone might do some of these behaviors and it can be perfectly normal. It’s the amount that’s sometimes the problem.

So people trying to make me feel more “normal” when I finally do try to speak of my actual symptoms by saying that hey, it’s no biggie, they do that too isn’t validating, or reassuring. It actually makes me feel stupid. If she can do it and then stop, why do I obsess, why can’t I stop?

 

OCD is part of who I am, and it’s not my fault. It’s an actual disease with a genetic and biological component. Using it out of context, simply put, makes me feel like I’m an out of control person who should be able to grow up and just stop doing it (whatever “it” is).

 

 

So why does this matter? Who cares? Who needs to know?

When I was first diagnosed with OCD, I was desperate to find someone to talk to, to connect with others. I felt shy to even join groups or like pages focused on this mental health disorder.

It wasn’t because I was ashamed. It’s because the public awareness of what OCD is was so far removed from what I was suffering.  I simply didn’t want to be misunderstood.

When it comes to mental health, we simply need to be speaking about it more. The more it’s accepted, the more it’s understood, the more people who are suffering will get help. (Note: I’m not talking about discussing specific obsessions or compulsions – this kind of reassurance-seeking can be a compulsion in itself. I mean talking about the disorder as a whole).

 

Taking care of my OCD has helped me be a much better, more balanced mother! It’s helped me do more, accomplish more, share more ideas. It’s helped me do more for others, give more charity, be more generous with my time and services.

It’s also taken me much farther away from my days of depression. In reality, mental health awareness can save lives and save families!

 

So while I am not ashamed of my OCD, I am shy about it. And I am ashamed that I don’t feel comfortable enough to speak about it openly.

Which is why I decided to write this article.

 

OCD is who I am:

It’s not the only thing that defines me, but the same personality factors that make more more susceptible to OCD make up who I am:

  • I have a heightened sense of injustice, which compels me to spread certain messages, and upsets me incredibly when things don’t seem right.
  • I’m a crafter intent on spreading the message of accepting imperfection because it’s something that I myself need to work on.
  • I’m a mother who struggles with knowing when to be the helicopter mom and when to step back.
  • I’m a cynical fact-checker who does extensive research with any parenting decision I make.
  • I struggle with wanting to do all the things – welcome to my blog!
  • I try to always do things correctly, in a straightforward manner. I am learning to accept my own mistakes. I involve my own son in my learning experiences, as he exhibits this same personality traits.

These are just a few things that make up who I am. This is just a part of the personality that goes hand in hand with my OCD.

 

One of my most painful symptoms was focused on Baby Y.

Since he was born I was convinced I was going to lose him! And it’s not without basis in reality – as he has numerous common medical issues such as food allergies, asthma.

I won’t go into more detail about my fears because every case of OCD is unique. But thank G-d, with lots of hard work and therapy, I’ve overcome my most dysfunctional symptoms.

For example, with Baby Y, I learned to do the best I can in each situation but to let go and let him live. I learned that there are some things beyond my control.

 

I am not qualified to really teach you about OCD but I urge you to do your research, to find reliable sources and to learn what it really is.

 

 

Here are some sources to check into:

 

NIMH has a really easy-to-read, brief and accurate outline. This section really resonated with me:

“Not all rituals or habits are compulsions. Everyone double checks things sometimes. But a person with OCD generally:

  • Can’t control his or her thoughts or behaviors, even when those thoughts or behaviors are recognized as excessive
  • Spends at least 1 hour a day on these thoughts or behaviors
  • Doesn’t get pleasure when performing the behaviors or rituals, but may feel brief relief from the anxiety the thoughts cause
  • Experiences significant problems in their daily life due to these thoughts or behaviors”

 

Beyond OCD – This article by Dr. Fred Penzel, Ph.D lends some insight into the condition. It’s got so many good points and is a must-read in  my opinion. This particular quote can help you understand the core of the disease in a way that’s often misunderstood, and using two words that define me: doubt and guilt. As a mother, the guilt angle is very much magnified.

“2. Two of the main features of OCD are doubt and guilt

While it is not understood why this is so, these are considered hallmarks of the disorder.  Unless you understand these, you cannot understand OCD. In the 19th century, OCD was known as the “doubting disease.”  OCD can make a sufferer doubt even the most basic things about themselves, others, or the world they live in.  I have seen patients doubt their sexuality, their sanity, their perceptions, whether or not they are responsible for the safety of total strangers, the likelihood that they will become murderers, etc.  I have even seen patients have doubts about whether they were actually alive or not.  Doubt is one of the more maddening qualities of OCD.  It can override even the keenest intelligence.  It is a doubt that cannot be quenched.  It is doubt raised to the highest power. It is what causes sufferers to check things hundreds of times, or to ask endless questions of themselves or others.  Even when an answer is found, it may only stick for several minutes, only to slip away as if it was never there.  Only when sufferers recognize the futility of trying to resolve this doubt, can they begin to make progress.

The guilt is another excruciating part of the disorder. It is rather easy to make people with OCD feel guilty about most anything, as many of them already have a surplus of it.  They often feel responsible for things that no one would ever take upon themselves”

 

Intrusive Thoughts – this article by Rose Bretecher is not written from a medical perspective yet it does provide some responsible insight. This quote in particular helps you understand why I chose to write this article with this title.

“Many experts have observed that people with OCD often possess a range of positive character traits, such as inquisitiveness, creativity and empathy. I like that idea: the brain which gives you misery is the same brain which can give you great joy.”

 

Health.com on OCD – some strong points and facts about OCD and what those of us who suffer from it want you to know.

 

Suggested reading: (affiliate links)Stop Obsessing: How to Overcome Your Obsessions and Compulsions by Edna B. Foa and Brain Lock: Free Yourself from Obsessive Compulsive Behavior by Jeffrey M Schwartz.

 

 

With that, I finish off with one final request:

If you believe you are suffering from a mental illness of any sort, PLEASE seek out professional help. It’s okay. It’s normal. And there can be relief. And whether you suffer from mental illness or not, please do the best you can to learn more about OCD and other mental health issues so that you can better understand the many people around you who suffer from them.

15 Comments

  1. Bless your heart for sharing this post! My daughter suffers with this and it’s not easy for others to understand.

  2. Dear Menucha,

    Thank you so much for sharing your story with us. Yes, mental health issues need to stop being THE ELEPHANT IN THE ROOM and start being discussed in ways that are meaningful and helpful.

    I was on medication for depression for several years before I put 2 and 2 together and discovered the answer was (DUH!) four–that I had a mental illness. Not just depression, but a MENTAL ILLNESS. (The caps were shouting, of course, which I had to do to myself to stop denying that I had a mental illness.)

    Hard roads, hard journeys, but such well-written information as yours is SO HELPFUL.

    And it was SO COURAGEOUS of you to finally share. Hard things take courage; IMPORTANT things take courage. You have already touched lives through your blog, and this newest admission, so well phrased and informative, might even save a life–or-two–along the way also.

    On behalf of all those you reach, a heartfelt THANK YOU.

    PS I am forwarding this link to at least TWO others who need to hear this. Lives touched. Blessings to you, dear sister.

    • Hi Nancy Grace, thank you so much for your kind words. It keeps me going when I hear that it’s actually had a positive effect. So thanks again for your kind comment! There is a biological component to mental illness that we need to acknowledge – medicine can help anything else so why not this? While I have managed to work things out through CBT and without medication (I tend to have exaggerated side effects so I avoid it as much as I can) we need to start thinking of this as taking medication as we would any mental illness. The same way there is no shame in getting physical therapy, why should there be shame in any other kind? It’s a big, bold move, and we need to own it, right?

  3. Oh my gosh. SO much of this resonated with me. I haven’t “officially” been diagnosed with OCD but after doing EXTENSIVE research on it, and knowing my father and grandmother have/had it, I’m pretty certain I do. I haven’t been brave enough to reach out to a professional for help because I’m afraid I won’t be taken seriously.

    Thank you for posting this. I too am so tired of seeing the “I’m so OCD” posts. You’re right! No one would ever say “I’m so bipolar”. That language needs to stop.

    Thank you!!!

    • Hi Beth, it can be scary to search for the right professional, but their job is to take you seriously! I was so afraid for so long to reach out. Find one that has a personality that you can feel at ease with and then understand that mental health professionals are the ones who truly know what goes on. They’re the ones who WILL take you seriously – they have specific tests to determine and diagnose with.

  4. You are not alone! I think if we dig deep down and are honest with ourselves, we all have some type or types of mental illness. It’s just the degree to which they affect our lives that makes that makes the biggest difference.

    I have minor OCD tendencies. I can not control myself when I see a label left on a bottle of lotion, or on a laundry basket or waste basket. (Yes, I’ve snuck into peoples bathrooms and laundry rooms and removed labels-sorry.). I also have this fear that my husband will have an accident on his way home after dropping me off at the airport. I can’t relax until he has called to let me know that he has gotten home safely.

    Being able to recognize theses issues, talk about them, get them out of the closet…is the first step. Then learning to accept them as part of who we are, makes a huge difference in being able to live a happy functional life.

    Thanks for sharing your story.

  5. I think it is healthy and honest to post about something so misunderstood and personal. In our household we have ADD, ADHD, with underlying depression and OCD tendencies. More than one family member and it is challenging but very helpful for our understanding and grace to others.

    • HI Rachel, I’ve read some articles on how some of these mental health challenges go hand in hand. Thanks for your kind words! I agree that personal challenges can breed kindness and empathy… but it takes strength of character to bring out that outcome!

  6. Jill F Littleton

    …‘Two of the main features of OCD are doubt and guilt..’

    This sentence has more power than most can imagine! As a sufferer of OCD, I could describe nearly my entire personality with those words, doubt and guilt. About everything! While I also pride myself on the few positive traits that tag along, such as empathy and deep consideration, they are the double edged sword that is OCD and often the very source of my worries. I obsess over the thoughts, opinions, and feelings of others to the point that I have none of my own. I’m so deeply wrapped up in how to accommodate everyone else that my anxiety and inevitable depression take a massive toll on my well being… along with everyone else’s around me. So who wins?? No one. I have caught myself countless times feeding the popular misconceptions of OCD and other disorders to those I just assume won’t understand the deeper issues. I’m easily mentally exhausted from even the simplest tasks, so the mere thought of trying to delve into any further explanations that I don’t see being understood is just too overwhelming. My reply to questions about superficial preferences usually ends up being ‘yeah, uh huh.’ That certainly does no one any favors, but instead fuels the fire of those who refer to it as ‘I’m so OCD about…’. I could ramble on and on but just wanted to show my appreciation for the true and very real info in this article. Well wishes to you all!

  7. Thank you for posting! I, too, have OCD. But didn’t quite understand the realm of it. Mine started as a young child – a coping mechanism. I’ve always blamed it on that. But now, I see more to it. When we get through all of our daughter’s medical bills, I will seek professional help. Thank you! B’H”!

  8. Thank you, thank you, thank you, thank you! You are a wonderful and courageous person! I am 58 years old and have suffered with mental illness as well as OCD since I was a very young child. I always knew I was different from other people and most of my life I never understood why. I was diagnosed with OCD when I was 45. Everything you you said about it is absolutely true. A majority of people totally misunderstand this disorder and I too am tired of people saying that they have OCD because there home is spotlessly clean. While that may be on the obsessive or compulsive side of things, it does not mean they have OCD! There is so much more to this disorder that most people don’t even know about! It was so nice to see someone truly explain the way it really is when you have OCD. I hope your post reaches a lot of people. Maybe it will make them want to lear more. Bless you!

  9. I love that you took the time to share and put this out there. I have OCD and it comes out as expecting perfection from myself and everyone around me, so I don’t envy my kids or my colleagues I must drive them crazy. I am fortunate to have a husband who gets past that part of me. It is hard not to act on my obsessions and let things be or try to fix things or even get up in the middle of the night because I have to look after something that woke me up or that my brain won’t let go of. It is also hard for me to not fix things my kids have done to help out around the house or leaving their homework/projects alone.

    Thank you.

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