The Downside of Sharing

The Downside of Sharing

One of my favorite parts of being more open about my mental health journey is the conversations it sparks - but sometimes, they can go too far.

For the most part, when people ask questions about my OCD, they’re polite and respectful. I can tell that the questions come from a place of wanting genuine understanding, and so I’m happy to answer them.

The problem is when people see how I am adapting to a particular situation and decide that I’m doing it wrong - and that they have a solution I need to implement.

This didn’t happen often before I started sharing my story openly. The few people I shared with were closer to me and I decided to tell them only after I trusted them. But now that I’m sharing with more people, I don’t get  to control who has this information, and I find myself in situations like one from last week:

I was invited to an event that I didn’t feel comfortable going to. When I expressed this and told the person that I would normally go but I feel like it’s too big of a risk right now, this was not an acceptable answer to them, so they kept probing. I had to spend a lot of time explaining every little detail about how my OCD works in order to get them to accept that I would not be attending the event.

Even though I’ve been writing this blog for over 4 years, I still felt overwhelmed when asked to justify why my OCD was preventing me from going to this particular event. When I was bombarded by question after question - most of them comparing this event to other things I have gone to in the past in different circumstances - I felt like I was sinking in quicksand. I couldn’t come up with a response that made anyone happy, and I certainly wasn’t expressing myself clearly or well.

I tried to avoid this. I even wrote out reasons why I couldn’t go, since I tend to be better with writing than speaking, and sent it in an email. But I couldn’t avoid the combination of curiosity about why my brain works this way and pressure to wear me down. I’m pretty sure people were hoping that I would get tired enough of answering questions, cave, and go to the event.

I’ve encountered this before - people trying to stress me out enough that I will appease just to get out of the pressure of the current situation - but I absolutely despise it. I can’t understand why people think it’s okay to take advantage of knowing something about someone (like that they get anxious when confronted with this sort of thing) and use it to get what they want. It’s manipulative and frankly mean, and when I am pressured like this, I am often reduced to tears before either giving in or standing strong.

In this particular situation, I stayed strong. But I have absolutely been manipulated in the past when people have information about me and use it in unsavory ways - like my first boyfriend, who I confided that I was self-conscious about being “normal,” and he used this information to coerce and manipulate me into taking steps forward in the relationship that I did not want.

Thankfully, this example with the event is far less insidious, but there’s still that same mentality of not accepting a “no” and trying to turn it into a “yes” by whatever means necessary. There’s still the same knowledge that I would rather give in than engage in a conflict, and that I tend to try to protect myself from situations that make me anxious.

Not to mention, asking why my OCD manifests in a certain way is not only a question I can’t answer, but also a question that makes me feel inadequate, as if I’m doing something wrong by not having OCD in the way someone else expects me to. It makes me feel like some kind of zoo exhibit or freakshow, like I’m a different species that’s extremely hard to comprehend. And this feeling only feeds into a recurring negative thought that no matter how hard I work, I can never be a “normal” person.

I choose what to share carefully, and in different settings I may be comfortable with more or less. I’m going to tell a close friend more than a coworker or casual acquaintance. That is my right and no one is entitled to information that I do not want to share. I am also not bound by anyone’s ideas of if I am not trying hard enough or not doing the things they want me to do. Even if I have chosen to share some information, my life and my choices still belong to me.

Long story short, sharing one thing does not make me have to share everything - and in all situations, the word “no” needs to be respected.

 Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Conflicting Desires

Conflicting Desires

I was very surprised at my reaction to receiving my itinerary for my upcoming dream trip to New Zealand: instead of purely excited, I was a strange mix of excited and very nervous.

All of a sudden, I was worrying about things I hadn’t even considered before: I would be 18 time zones away from everyone I know; I would throw my routine completely out the window; I would try a lot of new things; I wouldn’t be 100% sure what would be safe for me to eat.

In my frenzy to book the trip ten months ago, I ignored all of this as soon as I saw the places I’d be able to visit. I was beyond thrilled about going to all the sites from the Lord of the Rings trilogy, and I completely ignored the practical parts like the sixteen-plus hour flight, exploring a new country by myself before the tour begins, and the complications of figuring out an international trip in the first place.

I told my therapist that I was surprised I wasn’t feeling pure excitement about seeing the places I’d dreamed about. She, on the other hand, wasn’t surprised.

She told me that I’m very focused on my routine and the nitty-gritty of how things work, and she said it’s not surprising that I would get overwhelmed by planning so many details with so many things unsure or left to chance. She told me I could use coping mechanisms like I do for other times when I get overwhelmed, like dividing things into tiny tasks and feeling calmer as I accomplish them one by one.

My therapist helped me feel better about the tasks I had yet to do and helped me organize them in my head - and I was so glad she didn’t tell me to just stop thinking obsessively about the trip.

Anytime I’ve ever been told “stop obsessing,” it’s like telling someone to not push a big red button that says PUSH ME. It just makes me do it more, in other words - so what I’ve learned over the years is that I have to redirect the obsessive thoughts instead of stopping them, and wait for them to stop on their own.

Ironically, what helped me get out of this instance of a negative obsessive mindset was getting into a positive one.

I found an excursion to go to the Ford of Bruinen and Lothlorien - the two places that meant the most to me when I watched the movies for the first time and still hold a special place in my heart twenty years later.

I first watched the scene at the Ford of Bruinen when Dad was trying to convince me that Lord of the Rings - and by extension, other works of fantasy and science fiction - were not just for boys.

“Look, here’s a girl elf being amazing,” he said, and my entire love of fantasy bloomed in that one moment. It might sound cliche, but it’s true! I’ve always wanted to wear my elf dress in the place where that happened, and as soon as I found out I’d be going there, I felt that same childlike sense of wonder from when I first watched the movies.

And then there’s Lothlorien, which I used to dream of visiting when my head was in turmoil since it was such a peaceful place where everything was always safe. I used to have dreams where I wandered there for hours on end, only to be upset when I woke up. And I get to go there in real life!

Pivoting from negative obsessive thought patterns to positive ones is not always doable, but I always appreciate when it is. It proves to me that my brain isn’t incompatible with positivity - I just have to get there in a different way sometimes, and that’s completely okay.

 Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Thirty

 Thirty

This week, I’m celebrating my 30th birthday - something that seemed unattainable or impossible at certain times in my life, but I’m very glad to report that I’m still here, still fighting, and excited to see what the future will bring.

I’ve been in a reflective mood this week anticipating such a big birthday, and I keep returning to this: One thing I’ve learned throughout my life is that my friends and I who live with mental health conditions struggle with self-love. We may take care of ourselves, but in the face of a world still plagued by stigma, it can be hard to actually love what may not be as socially acceptable about us.

I’m starting my 30th year off right in the self-love department as it’s almost time for my dream trip to New Zealand, which will celebrate my positive obsession with Lord of the Rings.

But I also wanted to take some time to really think about acknowledging the things that aren’t as easy to appreciate - the things that have limited me in the past that I have been working on and will continue to work on throughout my life.

With that in mind, here’s a list of 30 things I appreciate about my OCD journey in anticipation of my birthday. It may not be perfect, but these milestones have meant so much to me as I’ve worked hard to live a good life.

  1. I’m thankful for my ability to turn my emotions and experiences into stories I genuinely love writing.

  2. I’m thankful for the “what if”s that inspire fantasy and science fiction stories instead of all the things that could go wrong in the real world.

  3. I’m thankful that I can cherish my small but close-knit group of friends instead of always wanting more.

  4. I’m thankful for the ability to support my friends in mental health crises because I have needed such support myself - and the way this helps us form deeper bonds.

  5. I’m thankful for macaroni and cheese, orange juice, and my favorite food, baked ziti - just a few of the foods I eat now that I never would have touched as a child.

  6. I’m thankful for the people who are kind to me about my food aversions and other OCD symptoms I still show, and my thicker skin with people who aren’t as kind.

  7. I’m thankful that I can do “life skills” like holding down a steady job, paying rent, and organizing a social life - which mean so much more when I never knew if I was capable of achieving them.

  8. I’m thankful for the strength to advocate for myself and what I need, and to help others do the same.

  9. I’m thankful for the fact that my limited experiences during childhood means that there are so many new and wonderful things to discover as an adult - and I no longer hold myself to any timetable of doing these things.

  10. I’m thankful for my ability to stop the “runaway train” thoughts I had as a kid and process things in the way I need, at my own pace.

  11. I’m thankful for how satisfying it feels to accomplish something I’m afraid of, whether it’s a one-time occurrence or a new part of my life.

  12. I’m thankful that I can put my organizational skills to work to make stressful life events that I anticipate as smooth as possible.

  13. I’m thankful that I’ve been cultivating independence ever since I moved so far away for college, and continue to rely on myself for a variety of new moves and fresh starts.

  14. I’m thankful that I’ve learned how to seek resources for things I need to learn, and the fact that I’m always working to make things better for myself even in the smallest ways.

  15. I’m thankful that I can take personality traits that come from OCD, including perfectionism, and use them to make my daily life easier instead of harder.

  16. I’m thankful for the medication that helps me survive and thrive - and that I am no longer ashamed of needing.

  17. I’m thankful that I can live a happy life after medical trauma due to putting in an immense amount of work that I never could have imagined actually working.

  18. I’m thankful that my mental health is now strong enough that I can talk about these and other experiences without flashbacks, panic attacks, or other physical symptoms that stopped me from enjoying life.

  19. I’m thankful that I was able to graduate college on time after two separate crises - one physical, one mental - that I wasn’t sure I would be able to conquer.

  20. I’m thankful that I now see myself as a fighter, as someone strong instead of weak for having gone through experiences like this.

  21. I’m thankful for the fact that I can hug dogs on the street after so many years of being afraid of dogs.

  22. I’m thankful that, even though I was afraid, I still took the leap of letting a dog into my life, loved him for all the years he was here, and sought counseling when he passed away.

  23. I’m thankful for the fact that I continue to seek help in therapy even after wanting to be “done” when I was a teenager - and recognize that learning about one’s own mind is a lifelong journey.

  24. I’m thankful for my ability to set new goals for myself and believe that I can do them, no matter how difficult I find them.

  25. I’m thankful for days without panic attacks, obsessive worries about throwing up, and all sorts of other negative thoughts I’ve learned to conquer.

  26. I’m thankful I can enjoy endless happiness from my positive obsessions and cultivate this joy through fandom conventions, fan fiction, and more.

  27. I’m thankful for the Lord of the Rings trilogy, which brings me so much pleasure during good times and inspires me to keep pushing during hard times.

  28. I’m thankful that I am willing to admit when I did not succeed at something or need more help, even if it’s something I had been looking forward to for a very long time or trying extremely hard to do.

  29. I’m thankful for the courage to try again with things I’ve failed before, including the fact that I’m willing to go to New Zealand by myself after some unpleasant international trips in the past.

  30. Most of all, I’m thankful for and proud of the fact that I am now confident enough in who I am to share these facts with others. I love the thought that I’m helping people feel more comfortable with themselves and working towards destigmatizing mental illness.

 Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

There’s Always One

There’s Always One

So far, I’ve been pleasantly surprised by the reactions of my family, friends, and coworkers as I invited them to read my blog, like my Facebook page, and read the stories I’d hidden from many of them throughout my life.

I had expected a lot more hatred to come my way - and it was shocking to me that it took so long for someone to say hurtful things about the advocacy work I’m so proud to be doing out in the open now.

I thought, once upon a time, that I was close with Dara (name changed for privacy). We spent so much time together in college, even if we fell mostly out of contact when we moved apart from each other. Still, though, I was excited to share my blog and Facebook page with her, and let her know that I’m working on publishing a book about this - something I’ve been eager to do my whole life.

Her response was galling.

She started out with the classic “everyone has OCD, you’re not special,” and then launched into the good old stereotypes of organizing and alphabetizing. Apparently, everyone who likes to keep a relatively clean home or organized desk at work has OCD…

When I told her that I was diagnosed at a young age, before anyone would start organizing - even if that wasn’t an offensive and incorrect stereotype - she told me, “Three years old isn’t old enough to know what’s going on in your head.” (I’m offended at this one not just for my sake, but for people like my best friend from college, Alex, who knew he was transgender at an early age.)

At the same time, though, she told me she “always knew you had issues” and “you had better be on the right meds.” She said this in a patronizing tone, as if I was still three years old and needed someone to tell me how to live my life.

She went on to tell me that she thought I was just autistic, since apparently autism and OCD are the same thing now (to clarify, there can be symptom overlaps, but they are absolutely not the same thing).

And then, perhaps the most galling thing of all: “Why would you keep it a secret?”

Why did I keep it a secret?

Because of people like her.

Because there are people who say they would have been supportive, but show their true colors immediately. Who would lend credibility to my negative thoughts of being a bother, a nuisance, and a problem. Who would teach me that it’s not safe to tell people who I am and drive me further into pretending to be someone else.

Until now, I have kept my mental illness a secret because I didn’t know who was safe. I didn’t know who I could trust and who would still want to associate with me after they knew. I didn’t want to give them the chance to hurt me, so - like an overprotective turtle - I stayed huddled in my shell.

And then, I poked my head out a little bit to do a podcast for No Shame On U. I gave a speech at work and realized that most people are not like Dara. For every Dara out there, there are plenty of people who have offered me unexpected support, kindness, and love.

Although I can’t say I’m grateful for my first hate comments, they’ve shown me so much about how most people around me are on my side. This support has encouraged me to keep going with this project even if more people say hurtful things, and instead of letting Dara’s words get me down, I’m going to keep writing and fighting until words like hers are a thing of the past.

Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Beautiful Minds

Beautiful Minds

This week, I got to experience something I’ve wanted to for a very long time - a room full of people like me.

I found out about a Zoom writing workshop for people with OCD from the International OCD Foundation, and was excited at the thought of finding creative inspiration while making new friends.

The workshop was holiday themed, and before we began, we took some time to get to know each other. I was surprised to learn that the workshop included people from all over the world signing in at a variety of time zones of varying convenience; there were also people of different ages, genders, and life backgrounds.

As someone who has not interacted much with other people with OCD, I found it fascinating to observe how people reacted to different things. I could tell differences and similarities in my own OCD versus other people’s, something I have found interesting for a while but haven’t really had the chance to explore.

Growing up, I always wanted to know other people with OCD. I wanted to see if we had any obsessions or compulsions in common; more than anything, I wanted to feel like I wasn’t alone as I figured out how to live a successful life with my condition. The only examples I had were negative and very public; I wasn’t aware of people around me who I could ask questions or learn from.

Writing was a common denominator of a hobby for all of us on the call, and unlike what I’ve experienced in any writing workshop before, we started the session by working together on prompts. It started out pretty simply - we identified common symbols for holidays around the world - and then branched out into coming up with holidays for pictures of random objects.

Contrary to most of the time when I’m in a writing workshop, I mostly stayed quiet and observed. I wanted to hear other people’s ideas and learn how they got there - but when there was a prompt to come up with a holiday based on a photo of bacon and eggs, I gladly contributed that this could be a celebration of Second Breakfast Day.

After we moved to individual prompts, I took some time to reflect. I don’t usually share my passions immediately, but in this setting I felt comfortable. I knew that other people were doing the same thing, and the space felt like somewhere no one would be bullying anyone else for how they expressed themselves.

Some people were shy and some were loud; some were excitable and others overanalyzed every prompt. But in the end, what mattered was how the facilitator described what she wanted us to do with the various writing exercises: to show off our beautiful minds.

This phrase made me stop and think. So much of the time, it’s discouraged from showing too deep of a window into a mind that isn’t neurotypical. It’s easy to fall prey to that with friends and family to the point that there aren’t many opportunities to share what really matters. But in this setting, where we all had a mental health struggle in common, it felt like a space to not only be safe but be celebrated.

In other words, in addition to the made-up holidays we wrote about, we were all celebrating ourselves - something I’ve found to be incredibly rare among neurodivergent people.

Joining this group has inspired me to continue to seek community. The more it’s clear that we don’t have to suffer alone, the easier it will be to speak up and smash the stigma preventing us from being “out” in the first place.

Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.