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Dissociative identity disorder is a commonly misunderstood condition.

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Welcome back to You’re Not Alone: A mental health series where we aim to highlight mental conditions that affect people’s day-to-day lives, and what products, apps, and services they use to make their every day easier. This month, we hear from Mel Van De Graaff, a freelance writer who has dissociative identity disorder (DID).

Content warning

This article mentions anxiety, depression, trauma, post-traumatic stress disorder (PTSD), and suicidal thoughts and ideation.

If you’re thinking of hurting yourself or are having suicidal thoughts, please call the National Suicide Prevention Lifeline at 800-273-8255.

You can also call 911 in the case of a mental health emergency.

My name is Mel Van De Graaff, a 30-year-old nonbinary transgender man. I use both he/him and they/them pronouns. I have been formally diagnosed with dissociative identity disorder (DID) and post-traumatic stress disorder (PTSD). I also experience depression and anxiety as a result of those conditions.

DID has a reputation for being the most difficult mental disorder to diagnose. One of the “clues” of DID is being diagnosed with different disorders that don’t quite fit. In the past, I was incorrectly diagnosed with borderline personality disorder (BPD), attention deficit hyperactivity disorder (ADHD), and bipolar disorder before we discovered that I had DID.

In fact, I was only able to receive a proper diagnosis of DID when I experienced a 2-year-long episode of dissociative amnesia. (This is when someone has one or more episodes of being unable to recall important information, usually because of a traumatic or stressful situation.)

Because of that, I was only officially diagnosed with DID in May 2021, even though I’ve been showing symptoms of it since I was 12.

DID is one of the most severe types of dissociative disorders. A dissociative disorder is when dissociation becomes a chronic reaction to one or more traumas.

Once called multiple personality disorder, DID is when someone’s identity is split between two or more personality states, also called alters.

Other common symptoms include:

  • dissociative amnesia
  • memory loss unrelated to a medical condition
  • dissociative fugue, which is when someone wanders off and can’t remember their personal information
  • a sense of blurred identity

According to the APA, 90 percent of those with DID have been victims of systemic childhood abuse or neglect.

Symptoms

One of the reasons DID is so hard to diagnose is because it shares a lot of symptoms with other disorders.

Here are some of the most common symptoms I personally experience:

  • memory loss or dissociative amnesia
  • depersonalization and derealization
  • detachment from myself and my emotions
  • extreme and sudden changes in mood
  • extreme susceptibility to overwhelm
  • blurred or messy sense of self
  • alter or other personalities that switch in and out with overwhelm and stress levels
  • significant stress in familial relationships
  • difficulty coping with normal levels of stress
  • other mental health conditions and symptoms, such as depression, anxiety, and suicidal thoughts
  • the presence of multiple people talking or living inside my head (These people have their own histories, voices, genders, and characteristics.)
  • different reactions to medications or food, depending on which alter or personality is out
  • insomnia
  • night terrors
  • panic attacks
  • auditory hallucinations during times of severe stress

For me, DID tends to be situational. When I’m not experiencing a lot of stress, I sometimes feel like I don’t have any symptoms at all. However, sometimes flare-ups can be unpredictable, so they can quickly become intense with little to no warning.

Things that will sometimes trigger my DID include factors like:

  • stress
  • money problems
  • holidays
  • trauma anniversaries
  • large crowds
  • overstimulation
  • sensory overload
  • people acting similarly to my past abusers

Medications

Medications are a bit of a tricky situation in my case. I initially was put on medication in 2014 when I was diagnosed with PTSD. Since then, I’ve been on over 30 different medications.

If I had known about my DID earlier, I would have known that DID itself actually doesn’t really respond to medications very well. This is also because alters react differently to medications.

Right now, I’m happily balancing a load out of four daily prescription medications and other medical treatments:

I am also currently prescribed medical marijuana, which works really well in managing many of my DID symptoms, like derealization and depersonalization. However, different alters have different tolerances, so I have to be really careful with dosing.

I also do supervised IV ketamine treatments once a month to manage my body’s response and interactions with my childhood trauma.

For me, DID is my life. It’s my way of living.

I don’t know what a life without DID would look like, because I don’t have one. It impacts literally every single aspect of my life. How can it not? It feels like I have 12 people sharing one body. Each of them has different relationships with the people in my life (most notably my partner), different preferences, different beliefs, and different tolerances for food, stress, and general daily life.

My life and my interactions with others will change depending on who is fronting (this is when an alter takes control of the body and is “at the front”) and how they are doing at any given moment.

When I was 5 years old, I experienced an extremely traumatic event. To cope and handle the severe damage of that traumatic event, my brain split into three “personalities.”

I don’t know what it’s like to live as anything but multiple people all sharing one consciousness. Once I realized that and learned how to shape my life around it, I actually found that I liked being multiple. That means that I, ‘Mel’ can step away from my life when it gets overwhelming and someone else can take care of it for me.

While that might sound great and all, there are some definite downsides that impact my life in great ways. I seem to be in the minority, and I feel that I only got here through extensive therapy and a determination to not let life get me down.

Many people I know with DID are still living with abusive families, partners, or friends. And if they aren’t, they are on disability or are completely dependent on at least one other understanding person to support them.

DID and avoidance

I have structured my life around accommodating my DID, as does anyone else with a disability. I don’t work traditional jobs. In fact, I wouldn’t be able to work at all if it wasn’t for freelancing.

Working as a freelancer allows me to accommodate flare-ups and reduce stress so that it doesn’t trigger overwhelm or amnesia.

My career also allows me to avoid crowds, which is a trigger for me. I’m able to go to the grocery store at 2 p.m. because it won’t be as busy as it is when people are getting off of their 9 to 5 jobs.

I also don’t talk to any of my birth family anymore, except my brother. Many people think this is an extreme measure. But for me, it was a necessary one.

Being around my family, who have a lot to do with my DID and PTSD, was constantly triggering me. The last time I talked with any of my birth family was October 2021, and I’ve noticed a significant decrease in stress flare-ups since then.

Coping methods

I’m not great at this yet, but I’m getting better!

Having a routine is incredibly helpful for managing stress and overwhelm. During the times when I’m better about enforcing my routine, my stress levels are lower. I think it’s because I know what to expect and I’m not constantly having to figure out where I am or what I’m doing.

I also frequently talk to myself with DID. My alters switch in and out a lot, which means I often don’t know what I was doing at any given moment.

Having whichever alter is out talk about what they are doing, where they are going, and what they hope to accomplish when they get there helps prevent that short-term memory loss and helps keep me functional.

Realizing I had DID was a long process. Many people with the disorder are in denial for years before accepting their diagnosis.

I first started thinking that I had signs of DID in 2010. I knew I had alters, but I was afraid of admitting it. I knew one person with DID at that point, and their disorders were so severe that they could not function. I was afraid that if I did have DID, my life would be a big mess.

However, I then went on to meet several other people with DID and realized that the disorder varies from person to person. I realized that some people could still hold down part-time jobs and adjust to their new normal.

For a long time, I wrote off many of my DID symptoms as complex PTSD as a result of severe childhood trauma — most notably the dissociative amnesia, or what I would call “blackouts.”

However, it wasn’t until I met with a psychiatrist in 2021 who told me that blackouts are not a symptom of PTSD when they aren’t a result of having a flashback.

How it feels to have DID

Mostly, having DID makes me proud of myself and proud of my brain’s resilience. I went through years of what most people consider to be the worst type of abuse. And here I am, still making a life for myself.

My DID is a successful coping tool that my incredibly creative brain came up with to weather an impossible situation.

My partner and I live on our own, mostly by our own merit. There have been several times in our lives when we’ve needed to rely on the generosity of family and friends, and we definitely couldn’t have done it without them. But we haven’t needed to move in with family, and we’ve been together for more than 12 years.

On the other hand, having DID makes me furious at the people who were around during my abuse. I sometimes wonder why no one stopped it from happening.

There’s also a lot of stigma and misunderstanding surrounding the disorder. I’ve seen and experienced firsthand that people with DID are some of the most hurt and haunted. They need our love, support, and understanding more than most.

There are several items that help me manage my DID. Here are some of my favorites.

Price guide

  • $ = under $15
  • $$ = $15–$25
  • $$$ = over $25

The Bullet Journal Method: Track the Past, Order the Present, Design the Future

  • Price: $$

“The Bullet Journal Method” by Ryder Carroll teaches you how to use a bullet journal to manage your everyday life and how to adapt it for your needs.

Honestly, the bullet journal system saved my life. Before I found it, I wasn’t functional, I wasn’t able to hold down any work, and I wasn’t able to keep up with my therapeutic methods.

Learning how to use the system helped me keep track of what things specifically triggered switches and how my medications were impacting me.

Most importantly, using a bullet journal is the only way I’ve learned to combat my dissociative amnesia. If it’s written down, it doesn’t matter what information my brain retains.

I know that, no matter the state of my own memory, my bullet journal helps me remember my deadlines, where things are in my apartment, and how to handle certain situations. I never would have figured out how to do that without this book about the system of the bullet journal.

The Dialectical Behavior Therapy Skills Workbook

  • Price: $$

This workbook was recommended to me during one of my inpatient stays at a mental health unit. Dialectical behavioral therapy (DBT) is a type of therapy most commonly used for conditions like borderline personality disorder, eating disorders, and DID.

DBT features a few core beliefs, like:

  • All things are connected.
  • Change is constant and inevitable.
  • Opposites can be integrated to get closer to the truth.

One of my favorite things about this book is the inclusion of cheat sheets for each skill. I don’t have to count on remembering any of these skills, because I can refer to this book.

DBT skills are a great way to learn distress tolerance (a person’s ability to manage actual or perceived emotional distress).

I use this workbook to help me when I have suicidal thoughts, when I get overwhelmed, or when I feel like I don’t know what to do during a difficult situation.

NVENF Heishi Beaded Bracelets

  • Price: $

I have a system when it comes to these bracelets. Each color represents a different alter. When an alter is currently out, their corresponding color will be on my right wrist. All the other colors are on my left wrist. When one switches out, I switch to the correct color.

This system helps in several ways. Once I implemented it, I realized that I was switching between alters much more frequently than I thought. It’s also an easy way to signal to the people around me that they’re dealing with a different personality without drawing a lot of attention to the process.

Jabra Evolve 65 MS Wireless Headset

  • Price: $$$

I could not function without noise-canceling headphones. I live in an apartment on a busy street, so the noise outside can sometimes become overstimulating.

Music can also be really grounding for me when I feel overwhelmed. I have different playlists depending on what I need at a given moment.

Hem Incense Sticks

  • Price: $

One of the most common symptoms of DID is dissociation.

Dissociation can be a disruption in:

  • consciousness
  • identity
  • memory
  • perception
  • emotion
  • motor control
  • behavior

Incense creates a strong scent that brings me back to my body and helps me ground myself in the moment instead of getting lost in my head.

There are more misconceptions about DID than you might think.

The biggest myth is that people with DID are violent or harmful people. In reality, people with DID are hurting. Many times, they’re more likely to harm themselves than they are to harm anyone else.

DID is also pretty common; it occurs in around 1.5 percent of adults in the United States. While it’s one of the rarer mental health conditions, it appears more frequently than people think.

The last thing you should know about DID is that whatever symptoms you see in someone else, or however much it seems to be interfering with their lives, it’s likely much worse than you could ever imagine.

People with DID will often downplay their experience and make it seem like it’s not as disruptive as it actually is.

DID is a complex mental health condition. Without adequate care and support, it can be debilitating.

If you know someone with DID, the best thing you can do is to be supportive and open-minded. It’s important to understand that their brain doesn’t work the same way yours does.