The Value of Honesty

The Value of Honesty

TW: Suicide

This week, I saw something I have never seen before: an obituary that honestly and openly deals with the fact that the deceased person ended their own life.

The obituary was for 25-year-old Cody (name changed for privacy), the son of two people who worked at my college. I had met him a couple of times; he seemed smart, kind, and passionate about the things he cared about. As his parents were helpful to me during my own tough times in college, I stayed in touch with them and was distressed to hear that Cody died by suicide last week.

It was a surprise to find this information out directly. As part of my job, I am responsible for reading and editing obituaries, and I’ve never seen one related to mental health where you don’t have to read between the lines. Usually, the obituary in question will have a relatively young age, won’t discuss the death at all, and will end with a request for donations to a mental health organization.

In contrast, when I read Cody’s obituary, I knew immediately what had happened - and not just from the statement his parents released to friends and family. I could tell from the fact that they said he died at home - and the fact that his parents mentioned multiple mental health diagnoses by name, including the one that caused Cody the most distress at the end of his life.

I’ve never seen someone openly acknowledge someone losing a battle to mental illness. I’ve seen a few memes on mental health advocacy Pinterest boards saying something like “we’re not ashamed when people die of cancer,” but in the real world, I’ve never actually seen a person’s loved ones be willing to share that their family member died by suicide.

In some cases, it’s embarrassment or a fear of religious repercussions - like not being able to bury the family member in a cemetery associated with a particular religion due to the cause of death. But ever since my own experience with suicidal thoughts years ago, I really felt the power of the stigma against mental illness when I was shunned and ostracized by everyone at school except for one friend who stuck by my side.

People treated me like I was insane for telling them how much pain my mental illness was causing me. One rabbi whose family I had been particularly close with distanced herself from me to an extreme, terrified that I would hurt her young children (who I had been babysitting since they were born - not to mention that I was never going to hurt myself or others).

When I saw Cody’s obituary, I was astonished to see that the disease that took his life was OCD. I have only met a few other people with OCD, and none of those people ever had a crisis like I did after my blood clot. People around me had a hard time understanding that I hadn’t snapped, lost my grip on reality, and turned into some kind of violent maniac - I was just me, overly scared of my own head for coming up with these thoughts as a solution to trauma flashbacks and round-the-clock panic attacks.

In addition to feeling seen in this way, I was glad that his parents shared about his interests and positive obsessions, the things that made him happy and how much love and care he shared during his life. I was glad to see that they hoped his life would be used as inspiration for other people living with mental illness and an impetus to treat these people - as the obituary says - with “compassion, gentleness, and love.”

I hope that Cody’s obituary might be able to help other people who are considering ending their lives, or ease the pain of people who have lost a loved one. When more people are willing to share honestly and openly about how mental illness has impacted them and their families, we as a society take an important step toward reducing and eventually eliminating the stigma of 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.

The Flea: A Case for Patient Potrayal

The Flea: A Case for Patient Portrayal

For children diagnosed with mental illness, it’s important for them to gain an understanding of their condition while also showing them that it’s possible to live a good life.

This week, I’ve been thinking about my own introduction to OCD - as well as a children’s book I read while in grad school - and I’ve come to realize just how life-changing it could be to receive this information from a person living with the condition instead of a third party.

I remember how, when my child psychologist first introduced OCD to me, she didn’t use the acronym or tell me about what I was doing in therapy. I thought I was taking extra classes, like in school, except that I was confused because I was always a stellar student who didn’t need extra academic support.

These sessions, though, weren’t like typical classes - and the psychologist explained to me that my brain works differently than other people’s and recycles thoughts instead of throwing them away. It was my job, she told me, to make those thoughts go away.

I didn’t know why my head worked differently, but I quickly understood that my real job was to do my best to be like everyone else. As an adult, I’m still unlearning some of the adaptations I used back then - one of the many reasons why I hope to publish my book and share my journey with young or newly diagnosed people who might not know much about the disorder beyond an individual practicioner’s explanations.

I also hope that, by sharing stories in this blog and my book, that I can combat more misleading and harmful portrayals of OCD by people who don’t know the disorder from personal experience, such as one children’s book I discovered in a children’s literature class in grad school. 

In the book, several farm animals suddenly develop OCD-like symptoms thanks to a flea, named O.C. Flea, appearing. The animals’ symptoms are described as “strange” on the first page and the speech the flea delivers about his intent is disturbing on several levels.

The first problem with portraying OCD as a flea is that a flea is an external source. This might not seem like a huge problem, but it’s absolutely incorrect to say that OCD is like hearing voices spoken by someone else. The idea of a little flea telling the animals what to do is not only deeply inaccurate to the nature of OCD, but also potentially scary for young children.

As a child who obsessed about germs and bugs, who was always terrified of coming home from school with lice, and who still shies away from most insects even at the ripe age of 29, I would have been even more frightened to think of my OCD as a bug, especially one known to carry many diseases. I also would have hated the thought of it spreading to people I loved and might have isolated myself further upon reading this.

Last but definitely not least, the flea’s introductory speech of “From now on you are going to do everything I tell you to do. If you don’t, you will feel really awful, and bad things might happen to you. And if you tell anyone about me, all the bad things will happen!” rubs me the wrong way for several reasons, culminating with the fact that the child is being encouraged to not tell about what’s going on in their head - which can delay or indefinitely stall proper care.

I’m not entirely sure what kind of metaphor I would use to explain OCD to a very young child. Personally, I’ve never really been able to picture my OCD as anything other than a part of my brain - even though I love all sorts of fantasy and science fiction. But it’s books like this that have impressed upon me the need to have someone who understands what daily life is like to create an accurate explanation.

As a writer, I frequently research the subjects I incorporate into both my stories at work and the ones I entertain myself with at home - including different mental health diagnoses. I’m well aware that I’m coming at these subjects as an outsider, even if I have friends with similar lived experiences to what I’m researching. I know that there’s no way for me to fully “get it” aside from trusting the stories of people who have been there before.

I sometimes wonder if I would have judged myself less as a child if I knew other people with OCD, if I didn’t think it was “strange” or “weird,” if I didn’t trust bullies instead of my family because I figured that such a large number of people couldn’t be wrong. It’s why I hope to continue educating people about what I’m qualified to teach, and learn from others what I don’t know. It’s only with this openness that we can have a real understanding of mental health that goes beyond stereotypes and assumptions.

 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.

A Day Off

A Day Off

When I read books featuring characters living with mental illness, I always wonder if my main pet peeve will happen. It always bothers me when the plot catches up to the characters and they mysteriously lose all signs of their mental illness before facing off against their biggest foe.

A character who has anxiety meeting new people is suddenly able to make a rousing speech and inspire a revolution. A character who panics frequently becomes mysteriously calm before fighting a dragon or climbing aboard an enemy spaceship. And specific disorders like OCD are often not mentioned in books at all, so there’s hardly a chance of a character experiencing an obsession or compulsion in the plot’s climax.

As a child, that was always a mystery to me. I often wondered: How did the characters do it? How did they conquer their hardest challenge with so much ease that the author didn’t even have to write anything on the page? I wanted a how-to guide to help me do the same thing so I could go on an epic adventure. I thought there had to be some kind of secret I didn’t know yet, some esoteric knowledge about how to do this that I was going to discover when I got older.

What I realized instead was that the authors were relying on one of two flaws to get them through: laziness or the assumption that someone displaying symptoms of mental illness can’t actually do a quest.

In terms of laziness, some writers don’t want to figure out how to incorporate mental illness into a plot that is likely complex on its own. It can be hard enough to get characters to a certain point without giving them further challenges, but at the same time, it’s disheartening to see that the writer wasn’t willing to try to brainstorm a solution.

The worse option is that the writer might believe there is no way for a character to “feed into” mental illness and also get through the plot of a story. In my opinion, this erases the value of representation the writer was trying to get across, since in the end, the character was able to get a day off from their mental illness to save the world (or whatever else the plot may be).

As someone who has literally never had a day off, and who is currently smarting from a long day of overthinking and feeling overwhelmed by the tasks I have yet to do, I feel discouraged when I see a writer do this. I feel like the problems in my own life are more insurmountable because of the lack of belief that it is, in fact, possible to solve a problem even when dealing with extra problems on top of it.

Throughout my life, I’ve had to deal with a lot of problems. Nothing quite like what I’d find in a fantasy novel, but still, I’ve had to work my way through my fair share of difficulty without the “easy way out” of simply pretending my OCD doesn’t exist. And, as a writer myself, I wanted to see if there was a way for my favorite genre to feature characters using their mental illnesses as a way to help with the plot, not as something to throw away when the going gets tough.

This is why, when I had the opportunity, I loved co-writing a musical featuring Tass - a fantasy mechanic with OCD - but felt overwhelmed at the thought. I was very keen on the idea, but I didn’t have examples of fantasy characters with OCD to base my story on. I didn’t have anything to go off except my own experiences and books I didn’t like - and sure, it took a lot more thought and brainstorming. But in the end, I was able to find a way for Tass to use his obsessions to help with the plot instead of ignoring them to make my writing process more convenient.

And, in my own life, I try to remind myself of this. On hard days when every little step of what should be an easy task feels like an obstacle, I pretend that I’m living in the outline of a story and tell myself that there are always options. They might not be quick, easy, or practical, but they do exist, and there’s nothing stopping me from continuing to brainstorm until I find something that works.

Sometimes, I wish I could take a day off from my OCD. I wonder what it would be like to go through life without being anxious so often, to not overthink every move I make. But for me - just like it shouldn’t be for writers creating characters with mental illness - it’s not an option, and the best thing I can do is hone my creativity for both fictional stories and real life to help me find optimal solutions.      

 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.

When you Can't Eat Your Words

When You Can’t Eat Your Words

In my recent appearance on No Shame On U’s podcast, I advised friends and family members of people with OCD to not point out their loved one’s compulsions to avoid embarrassment and shame. But what happens if you point out a compulsion by accident?

My mom encountered this situation this week when, at a shift at work, she was in charge of overseeing a coffee machine for hospital patients’ families. Someone she didn’t know came in and started to refill the coffee machine’s water tank, even though it was almost filled to the top. He continued to do so until Mom - who was used to people not knowing how the coffee machine worked - told him that the tank didn’t need to be full to work properly.

Mom told me that the man’s demeanor changed, and it was as if he deflated. He explained to her that he has OCD, and one of his compulsions is that he always needs to ensure that the tank of water by any coffee machine he’s using is full. Even after he brews his cup, he returns to fill the coffee maker entirely.

Mom told me that he was deeply embarrassed to have a compulsion pointed out - but in her defense, she had no idea his behavior was anything other than a run-of-the-mill encounter with someone who didn’t know how to use the coffee machine.

In response, Mom told him that it was completely fine with her, then noted that he had in fact made her job easier because she didn’t have to refill the tank herself. He stayed and continued to make his coffee, but even when he returned to the room again later, Mom said he still seemed embarrassed.

Mom told me that her response was an attempt at a joke or some other way to put him at ease, but she wasn’t sure whether she had done the right thing. She said she wouldn’t have pointed out a compulsion if she knew that’s what it was, but it happened anyway - and she asked me later that night if she had done everything right given the circumstances.

Although I can’t speak for every person with OCD, I can certainly speak for myself that whenever anyone noticed any of my compulsions, I was deeply ashamed and wanted to just melt into the floor. I was used to people pointing out my compulsions in a bullying way, but no one has ever pointed out a compulsion of mine in a way legitimately designed to help - or at least I never saw it in that way.

I knew my family saw my compulsions and assumed that they were just as embarrassed about them as I was. I tried not to talk about them unless asked repeatedly, and I was always mortified to admit that I had to touch something a certain number of times or only drink water from water fountains out of the corner of my mouth.

And the worst part for me was that I knew in my heart that my compulsions weren’t actually going to help me. I knew that I was just looking weirder than before for no reason. I knew that praying three times instead of once wasn’t going to keep me from throwing up, but I did it anyway, because the alternative was to wallow in endless anxiety that washed over me in waves so powerful that I didn’t know what to do.

Now that I’m older, and have had years of therapy, I have alternate coping mechanisms. I don’t need compulsions the way I did when I was younger - a path that some people with OCD end up going down - but I still remember how strong the impulses were, as if I was a puppet on a string dancing for my anxiety’s sake.

I can’t offer personal experience with compulsions as an adult, but I can imagine that after having OCD for a long time, it would be even more embarrassing to perform compulsions in public. Whenever mine were pointed out as a child or teenager, I felt like a spotlight had been pointed at me, and there was a perfect opportunity for everyone to laugh. Look at the girl who thinks she’s smart, but can’t step on a sidewalk crack!

I can imagine the deer-in-the-headlights look Mom described to me, as well as how the man seemed to want to get out of the situation quickly. But I did have to commend her for responding quickly and kindly when she made a mistake, which stopped the situation from getting any worse.

Instead of asking more questions or offering pity, Mom did her best to defuse the situation and make the man feel as comfortable as possible. There was damage done, but at least it was one blow that came from innocence instead of repeated and deliberate mocking of what he needed to do to survive.

This may sound dramatic, but even years after performing regular compulsions, I remember how much of my life they took up, how many pleasant memories they usurped. I remember how, in stressful situations, they always got worse - and I am proud to have a mom who saw someone in a stressful situation, made a comment out of a desire to help, and then supported a total stranger the best she could.

When I was growing up, I never would have had the courage to admit that I was doing a compulsion to a total stranger. I barely admitted it to the people who I loved most, and many times then, they didn’t know what to say. It’s experiences like these that show me that we as a society are making progress toward a more open and tolerant world.

 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.

Still Good

Still Good

In my favorite Disney movie, Lilo and Stitch, Stitch tells the Grand Councilwoman that the family he has found is “little and broken but still good.”

As someone who grew up always thinking in absolutes, this idea was unusual to me, but very important to encounter. I struggled - and still do - to not think of things as black or white, wonderful or terrible. And coming from a movie where I strongly identified with the main character - a little girl who grows up doing things differently from her peers and with no friends until a literal alien arrives from outer space - it was a great way for me to open my eyes to the “gray areas” of thinking.

I had an opportunity to practice this type of thinking this week as I permanently joined a D&D group for the first time since my longtime group ended abruptly several months ago.

It took all my coping mechanisms to get over the end - with absolutely no warning - of my group that had been meeting almost every week for the last two and a half years. I reached out to my support system, tried to distract myself in every way possible, and took my therapist’s advice to “control what you can” by writing a novelization of the story so I could end it in my own way.

Part of me wanted to find another group right away, but I was scared of getting burned again. This was the first group I’d been a part of where people weren’t extremely unreliable, horrible writers, or toxic to the point that I felt highly uncomfortable. Getting into my old group took such a huge amount of pure dumb luck that I didn’t think I’d be able to find a good group again, and focused on my own healing even though I missed it immensely.

Eventually, though, I decided to give it a shot. I looked around online and found a local group that I attended for two sessions, but it was such a different system of gameplay that I couldn’t figure out how to make it work. I couldn’t get involved in the story, and although I enjoyed meeting new people, I couldn’t enjoy the actual game. I ended up withdrawing from the game and staying in touch with the Dungeon Master (DM) and a few other people in the group, but I was still missing the activity that I’d gone there for.

And then, last week, my dear friend John* (name changed for privacy) asked if I would be interested in joining the group that he’s a part of for one session - and maybe more.

I instantly made excuses. I knew one person in the group with a really bad work ethic, and I assumed that - like in my old group - if one person didn’t show up, the rest of us wouldn’t be allowed to play. I assumed that no one would want me joining after the first session and that the group wouldn’t be reliable and that it would just be another letdown like the groups before the one that lasted for so long.

I then realized that, several times in the past, I had let these assumptions get between me and the opportunity to try something new. Even though this wouldn’t be the same exact thing as my old group, it could still be good - something that my all-or-nothing thought patterns that I learned about in Cognitive Behavioral Therapy (CBT) doesn’t usually let me consider.

And so, I took my friend up on his offer. I asked him to connect me to the DM of this group, who told me that I could pick between several characters the people in the party had already met. He gave me plenty of backstory information, and I ended up selecting a paladin.

That was the first difference - for the last 2 and a half years, I played a bard from level 1 to 20. This was a level 3 paladin of a different race (human, this time) and the setting was from official content (the Baldur’s Gate series of games) as opposed to an original world made up by my previous group’s DM.

I found plenty more differences when I actually went to the session. I only knew two people - my friend and the person with the bad work ethic. The group was bigger, which I thought would be a problem but ended up not being one. I was behind on content instead of knowing better than anyone else what was going on.

But somehow, it was still good.

I got that wonderful feeling of sitting down with some new people - new friends - and playing one of my favorite games. Even though I was playing a different character in a different setting with different people, the feeling of finding a great group was still there.

And so, I asked at the end of the session if I could become a permanent member of the group. I was offered an enthusiastic “yes!” from everyone and was able to put D&D on my calendar for the first time in months.

This experience has helped me realize that my thought patterns may be limiting my experiences. If I want everything to be perfect and won’t settle for less, I won’t have the opportunity to find things that are “still good” - enough to make me happy even if they aren’t exactly as I imagined them.

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.