The year is 1990. How could I ever forget that year? I was on tour with the hottest band in the world. People say fame and fortune isn’t all it’s made out to be. People are wrong. It’s the highest I’ve ever been, standing on that stage every night, singing hit song after hit song for a crowd of 50,000 screaming fans.

Actually, that’s only partly true. The highest I’ve ever been is when the love of my life and member of aforementioned band, Joe McIntyre, brings me out on stage to sing only to me, declaring his love before the world. I never thought we’d get here. It’s been a long haul, but we made it. I AM THE ONE. They can scream themselves into a tizzy all they want. His baby blues are only looking at me. This is mad love, this is deep love, and I know, I know, no one has ever loved like this before.

Crap. Hold that thought. A near deafening alarm bell is telling me I’ve got seven minutes to race to my locker, grab my books for next period and get to class. I can pick this up again once I’m settled at my desk. It’s too good to wait until I get home.

It’s true enough that the year is 1990. But I’m not hanging backstage trading jokes and bonding with the New Kids on the Block. I’m sitting in a 6th grade social studies class and I might as well be invisible. I feel invisible. I spend most of my time in my head, dreaming up a better life, though the one I’ve got isn’t at all terrible. It’s just normal. Maybe a bit boring.

Cut to a few weeks later. I’m at the New Kids concert screaming my head off like every other tween there. We’re in the nosebleed section. There’s an empty row of seats down below that have remained unoccupied the entire concert. My friends decide it’s now or never and share their plan to get closer to the stage. To my shock, our parents agree. Just a little harmless fun, I guess. Then I do something that confuses everybody, including me.

I say no, I don’t want to. “You don’t want to get closer?” my friend asks. “Why?” I don’t know what to say. “I just don’t want to,” I say. My friends scurry off, leaving me with our moms. Twenty minutes later they return, giddy. Apparently, they jumped and screamed at that ear-piercing pitch peculiar to preteen girls until they got the attention of one of the New Kids, and were rewarded with a smile and a wave. All the way home, they were chatting and giggling. Meanwhile, I laid my head against the van window and imagined what the fantasy version of me would be doing, now that the show was over. Joe and I would be glued to each other, no doubt. We’d all be sweaty and exhausted, having given our everything to our fans. The van pulled into a McDonald’s drive-thru and one of the moms took our drink order. I ordered only water because I figured that’s what would satisfy my alter ego popstar after all her exertions onstage.

Later that night in bed I wondered why I turned down the opportunity to get closer to the guys I’d spent the last couple of years dreaming of meeting. I realized that I had been scared. I didn’t want to get closer because then they would feel more real to me. I would feel more real. Dream world and the real world would merge, and that made me uncomfortable. Apparently, I only thought I wanted my dreams to come true. This revelation was disturbing. But I handled it the way I handled anything that upset or frightened me. I told myself nothing was wrong, no big deal, nothing amiss here. I eventually drifted off to sleep. Unlike most people, sleep was when my dream world paused. But it would come to life again for me in the morning. I don’t know when the fantasizing started. It seems like there was no beginning, like it was always just there. I remember as early as age 6 being consumed with near constant daydreams, mostly about my Barbie dolls and the lives I would create for them. This was no small task, given that I had a playroom with floor-to-ceiling shelves, most of them lined with dolls. I knew all their names, their individual talents and skills, what they were studying, and later, what they did for work, who they were dating and eventually married, all of their kids’ names, first and middle. Even what they were wearing and sometimes eating on a particular day.

I was already a seasoned multitasker, somehow managing to keep this world alive in my head while also playing with other kids, listening to my teachers and maintaining straight A’s, spending time with family, participating in youth group at church. I could even fantasize while having a conversation. At first, it wasn’t a big deal. Or, I should say, it seemed innocent enough and not harmful. But really, by second grade I had already started down a path that would lead
me straight over a cliff. A therapist once told me it’s normal for children to fantasize a lot. Eventually, though, they become more interested in the real world around them and how they can contribute to it, and the fantasies lessen. That didn’t happen for me. I could never seem to get enough. But it still took years before it occurred to me that maybe I couldn’t stop, even when I tried.

In addition to all the fantasizing, I also suffered from dissociation. (A word I wouldn’t learn until around age 16. I just assumed the appropriate word to describe me was crazy.) I felt as though I wasn’t in my body, as if I was just a floating head. I’d often be surprised to catch a glimpse of myself in a mirror or when someone acknowledged me. If I touched my own hand, it felt foreign, distant. I felt as though my head was full of cotton. The world around me looked dull and unreal. The way I would describe it to a therapist was that I felt like I was living in a movie. The people around me seemed to be merely characters. I felt mostly numb and empty. My mother noted I never cried when my grandmother died. I didn’t dare tell her I felt nothing, that for me, her death wasn’t real because she wasn’t real and I wasn’t real.

What I desperately want to do now is segue into the miraculous recovery portion of my story. I always believed there would be one, no matter how dismal my life became. But like so many of my other fantasies, that one didn’t come true. So here is my truth: I am now 42 years old. Most of my four decades on the planet have been wasted in fantasy.

It’s been almost two years since I discovered there are other people like me, and even a name for my condition. I have Maladaptive Daydreaming Disorder. The term was coined by Dr. Eli Somer, a professor of clinical psychology at the University of Haifa in Israel. The reason no therapist seemed to know what to do with me over the past 30 or so years is because they’d never
heard of MDD. Many still haven’t, some 20 years after Somer first identified it.

Apparently, some mental health professionals who learn about this disorder don’t think it’s such a big deal. They scoff at the notion that a universal habit like daydreaming is a disorder. They push back at Somer’s attempts to get MDD into the DSM-5.

Well, I am living, breathing proof that MDD is real and debilitating. It stunted my growth in every way possible. While my peers were learning to navigate the real world and develop the necessary coping skills to do so, I remained locked inside an alternate reality. I didn’t need coping skills there, because everything went my way. I struggled to learn as my schoolwork became more complex. I struggled to maintain a job, walking out three times after suffering mental breakdowns. I am often paralyzed by social anxiety. I have missed my life, missed my youth, all the fun and frivolity and adventure of that time. More than that, I missed the experience of my life. Even when I was there, I was always somewhere else too. I could sometimes cry or be elated over something that happened in my fantasy world, but I remained stoic and numb regardless of real life circumstances.

Over the years as my mental and physical health deteriorated, I was not present enough to my pain to change anything in my life. I eventually became so physically ill that I could no longer hold a full-time job. I wonder if I had been more present to the pain instead of shutting it out through escaping, whether I would have been more motivated to change, before my health was
ruined.

I am only now slowly starting to come out of the constant state of fantasizing and dissociation, though I doubt I will ever fully be free. But I have been jolted half awake by my own desperate situation: My mother and I are both in chronic pain. Every day is spent merely keeping our heads above water. I am tasked with keeping myself alive and also meeting her needs. It’s a load that is so heavy I cannot help but feel the pain and at least be partway in reality, though it’s a reality I would love to escape.

But even when I do, the fantasies no longer numb me to my pain. I feel sometimes as though I am awakening from a coma. There are people who have died that I have not grieved. Everywhere around me, people are suddenly much older than they should be. Relatives who I still think of as children now have children of their own. Of course, I was here for all of it, but it wasn’t real to me.

I cannot be in a romantic relationship. When I’ve tried, it’s been clear that I am developmentally stunted. No grown man wants a relationship with a 42-year-old child. Most of the last three decades are a blur. All I’ve done is tried to survive. And I have succeeded. But survival is not enough to make life worth living. Will I ever get out of survival mode and be at peace?

No, I don’t have a recovery story. But now at least I know that there are other people out there like me. Two years ago, I was convinced I was the only person on planet Earth who had this problem. Now I know that’s not true. I don’t know if it’s too late for me, but I know it’s not too late for a little girl who somewhere is getting lost in a grand adventure in her mind, completely unaware that the adventure might one day turn into a horror story she can’t escape.

I remember once trying to keep track of how long I could go without fantasizing. I lasted only seconds each time I tried. I was absolutely unable to stop of my own free will. Regardless of what anyone believes, that is the truth. MDD is real and it has ruined my life. But now that I am talking about it, and writing about it, and know that others share this disorder, I do feel less alone. More people need to share their experiences with MDD so that we can all know we are not alone. I strongly believe MDD should be included in the DSM-5. And I believe sufferers often need specialized and intensive help to pull out and cope in the real world.

The only way for us to feel safe to be honest about our stories is for the mental health community to start taking this disorder seriously. And we are the ones who must demand to be taken seriously, who must keep going to therapists and telling our stories until someone listens and is willing to learn. It’s an unfair burden to place on the backs of people struggling to just survive, but it’s the only way. Dr. Somer is a dedicated ally, but he cannot do all the work alone.

I live with the wreckage caused by MDD every single day. My life is the proof of the misery it causes. My story may not end the way I hoped. But it’s not too late for some child somewhere. There is a precious life out there that can only be saved if MDD sufferers and mental health professionals unite to acknowledge this disorder’s devastation and find an effective treatment.