“Because of the stigma, I’ve worked hard to keep the diagnosis off paper.”

I didn’t have a strong sense that something was wrong for a very long time, which I would later learn is largely the function of dissociative disorders. I was diagnosed with DID at 29, and it’s something I still struggle immensely to accept as true. Because accepting it as true means letting go of the denial that things were bad for me.

What I did know growing up, was that I was different from other people. It always felt bizarre to hear people talk about themselves. They seemed to know things about themselves and their lives that I didn’t.

It’s not that I didn’t know the story of my own life, it just felt flat in comparison. It’s like I had a set of facts about my life. I knew the basics of where I lived, what age I was when major things happened. I could recite the necessary information to not appear concerning. But something felt lacking. I knew those facts were about me and my life, but they felt like lines I’d learned that I didn’t know the full story behind. I couldn’t see myself in them. I felt not quite human. Like I didn’t have the same machinery everyone else seemed to have that let them be part of life.

I had a sense that my family was not quite right, and a vague sense that my life had been hard in ways it hadn’t for others. I just didn’t know how abnormal things were. And had no idea just how much trauma I’d been through.

It wasn’t until I moved away for college that things began to unravel a bit. I struggled intensely in school. I was so scattered. But also so put together and massively successful at some times.

By the end of college, I’d been through several more serious traumas that were massively destabilizing, and eventually made an attempt. I didn’t seem to really realize it though. I showed up to work the morning after being discharged from the hospital and felt like everything was totally normal. I couldn’t grasp why my boss sent me home to take some time off.

Around 24 I was able to afford therapy for the first time, and that’s when I began to realize I had trauma as memories began to resurface. I finally internalized that something was not right. Over the years I was diagnosed with so many things: depression, anxiety, OCD, PTSD, autism, an eating disorder and ADHD, until finally a diagnosis of dissociative disorder, which seemed to explain most of those other diagnoses.

Day to day now, I’m beginning to have a better sense of the different aspects of myself. I experience a lot of confusion, and feeling kind of disoriented. Time has no meaning. Trauma memories and reactions fill my days. My moods change rapidly. Strong feelings and urges come on suddenly and disappear suddenly. I forget things. A lot. Especially about myself. I sometimes can’t remember what I’ve done for hours or a couple days. It feels unsettling to realize you’ve forgotten really significant things.

Dissociation and having a fragmented consciousness is a really hard thing to put into words. It feels like it just slips through your fingers. The best way I can describe the day to day experience of it is like you’re standing on a rotating platform. As you turn the world looks very different and you feel totally different. But you’re not really aware the platform is turning. What you see now feels like all that exists. The really hard part is working through all the trauma that caused the condition. I’m still fully coming to terms with the aftermath of my upbringing.

I think the dissociation in many ways made me able to better function at work and school, at least before I became more aware of things. Having that sort of compartmentalization helped me be able to function at work and school while other parts of me experienced the traumatic events and later the symptoms of that trauma.

I still have a pretty strong split between the part of me that works and other parts of me. As I’ve gotten older and become more aware of these other parts, I don’t think they function as seamlessly anymore. These days there’s more conflict, as that compartmentalization is lowering. This has made work much harder. I forget things. Important things. Like meetings. I’m late, a lot, because one moment I’ll be present and the next I won’t. I won’t remember conversations with colleagues. Things feel very fuzzy. From the outside I’m sure I seem scattered, disorganized, and spacey.

Relationships have been harder. I’ve never felt like I was able to connect with other people. I forget people. I can’t hold onto my emotions toward someone, they disappear. I feel like there’s this frosted glass between me and everyone else. I have a really intense longing for others but also a stronger urge to avoid all people. When I do get closer to someone, I alternate between panic and detachment. Relationships- especially romantic ones- have seemed to really destabilize me in general.

It was a long road to being properly diagnosed. There were so many misdiagnoses along the way, which I later learned is common with DID because the different parts can show different symptoms so you end up with a bunch of different diagnoses. I tried lots of different psych meds in those years. None of them really worked and I’d often have weird or unexpected reactions to them. Or they’d work for a little bit, but then suddenly wouldn’t.

After a couple of years of therapy, when I started to realize I had trauma, I started reading a lot about trauma. Lots of books. I stumbled across the word ‘dissociation’ while reading them. From that I thought that dissociation was probably something I was dealing with and I remember feeling a lot of relief hearing it described, but also a strong feeling of, “Nope, can’t think about that too much.” I read about DID and thought it sounded like me, but I also dismissed it right away, because it seemed way too serious and I felt like there’s no way I could have it.

Years later, by total luck and unknowingly, I ended up in a therapist’s office that happened to specialize in dissociative disorders. After several years of therapy with this person, I brought up how I had once wondered about DID, and she didn’t think that idea was crazy. She evaluated me formally and diagnosed me with DID.

Because of the stigma, I’ve worked hard to keep the diagnosis off paper. When I have told other professionals about it, it hasn’t gone well. I’m either told it’s not a real diagnosis or they bring in a bunch of people to come talk to me like I’m a zoo animal because the disorder is ‘so rare.’ In reality, it’s not really that rare, or anything like you see in the movies. But there’s a whole complicated history behind DID that means so many clinicians are misinformed about the condition.

I’m still in the early stages of treatment. And still struggle with denial of all of it pretty massively, but I’m slowly getting there. There are no meds that directly treat dissociative disorders but having the diagnosis did make a big difference in how my psychiatrist targeted my meds. She started prescribing stuff based on PTSD and dissociation rather than depression. And now I’ve found a med that’s really, really helped me so much. Therapy also helps a lot. I’ll probably be in therapy for many more years for all the trauma, but I feel like I’m starting to heal in some ways.

I’m not very open with my diagnosis. I really avoid telling anyone including professionals. People don’t really seem to understand DID. People are definitely curious about the alters part of the disorder. Although they seem to expect alters to be these really obvious and defined personalities that they could observe. Which I don’t think is the case for most people with DID. For most of us, it’s not obvious, it’s very hidden, even from ourselves sometimes. It also feels kind of invasive. Like telling someone I have DID feels like putting a flashing sign on my head that I was severely abused.

I have talked about it anonymously online a little bit, but it still doesn’t feel great even in DID spaces. I haven’t seen a lot of representation of my experience in those spaces. So I pretty much keep it to myself. It’s pretty confusing and lonely to have nowhere safe to talk about it.

I don’t think media representations are accurate most of the time. They tend to be very overdramatized. The multiple identities part of DID gets really fetishized, I think especially in online spaces. In reality, you would never know if you were talking to somebody with DID. Your teacher could have DID, your doctor, the mailman. We’re ordinary people who mostly function okay and blend in in society (although struggle intensely internally). The personalities are not obvious, even to the person who has DID (for much of their life). You likely would not notice someone switching at all.

People with DID are not typically dangerous. DID gets associated with murders or serial killers a lot in movies. But in reality we’re more likely to be victims of violence than perpetrators. It’s also not rare. It’s more common than bulimia, and you’ve probably met someone who has struggled with an eating disorder but probably have not met someone with DID even though it’s more common. A lot of that is the secrecy of the disorder itself, but a lot of it is also stigma.

I feel like I’ve already mentioned this, but DID really isn’t like how you see it on TV or on social media. I wish people knew that a lot of the information out there about DID isn’t accurate. And that makes it so much harder to navigate this diagnosis. It also contributes to even more stigma and disbelief around the disorder. Folks with DID tend to be really secretive and avoidant and would likely never announce the disorder or talk about it with you. We don’t even want to acknowledge it ourselves. So don’t be offended or hurt if someone with DID doesn’t want to talk about it with you.

I’d tell a friend or family member to be patient and understanding with someone with DID. And to try to keep loving them, even when they seem aloof or disconnected all the time. Know that they’re dealing with really big and difficult feelings under the surface of the numbness, and often outside our awareness. And that life is so confusing and disorienting all the time, we’re going to be scattered and forgetful.

Our moods may change rapidly and unexpectedly. Learning how to be vulnerable and connect with other people after a lifetime of trauma is so, so hard. But most of us are lovely people who are capable of love, empathy, kindness, and are wonderful people to know. We just need folks who can walk alongside us as we heal and figure out how to connect with others.