Because of the strong stigma and misconceptions of dissociative identity disorder (DID), it is important for others to hear about the experiences of those who live with it. To dispel the myths around this condition, we discussed the disorder with a DID advocate familiar with the community.
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First, it is important to define what the condition is and how it is experienced.
What is dissociative identity disorder?
DID is comparative to PTSD. People with PTSD do not have other personalities, however, both conditions involve trauma and triggers. The difference is that if a person with DID gets triggered and cannot stay in the here and now, they switch personalities. Triggers for a person with DID are related to past trauma, and they have difficulty staying in the present. To cope with trauma, the brain splits into different personalities. For this reason, DID usually starts at an early age. If you ask someone why they walk with a cane, for example, they will tell you that they have trouble with balance or walking. It is like that with DID, too--It exists because it is a strategy for keeping the brain and body alive in the face of severe trauma.
Everyone dissociates during the day. For example, think about walking into the kitchen and smelling cookies. You may think about making cookies with your grandma, and the memories associated with that. The trigger could be a certain perfume, or a certain environment. This is an example of disassociation where you go back to the past. DID is when the trigger causes a switch between the personalities (alters). Each alter has distinct individual opinions and strengths.
This emphasis on personality switching is reflected in the condition’s former name: “multiple personality disorder.”
How do people with DID feel about the term “multiple personality disorder” vs “dissociative identity disorder?”
A list of criteria from the DSM-5 may not easily describe a person's real-life experiences. It is hard to produce a list of symptoms or shared experiences because everyone with DID experiences it differently. Changing the term to dissociative identity disorder created a more clinical label that emphasizes changes in identity and consciousness, but people still have trouble identifying what the condition is. There are a lot of unknowns about the diagnosis because it is much more uncommon than bipolar disorder or PTSD. Newer diagnostic criteria are becoming clearer, but there is still a long way to go.
The unknowns about the diagnosis are what cause people to develop misconceptions. These misconceptions can have very real effects on the DID community.
Do people with DID face stigma?
TV shows, books, and media have contributed to spreading misconceptions about individuals living with DID.
When a person tells another that they have DID, the first thing they usually hear is…
“Is there anything we need to know to be safe?” or “are you going to hurt anybody?”
This is part of the stigma around DID-- people think that individuals with DID are dangerous, or insane. Unfortunately, there is fear surrounding the disorder. People may even see them as being possessed. Truth be told, individuals with DID will usually project anger and rage inward, not outward. They are not any more dangerous than anyone else. Outsiders may feel entitled to ask personal and invasive questions. This is the reason that many individuals with DID will only reveal their condition to people they trust.
Even going to therapy can make the individual with DID feel like they are being put on display or being used to help professionals gather data for science.
In the 60s and 70s, a person with DID would have been sent to a mental institution, often with horrible conditions. The attitude toward mental health has gotten more positive since then, but the stigma around DID is still there. To this day, individuals with this disorder feel that they cannot live authentic lives due to the fear and stigma present in society.
The entire DID community deals with stigma. However, there is some variation when it comes to the diagnosis and how individuals cope with it.
How does DID differ from person to person?
Every person with DID is different. Individuals with DID can have one hundred personalities with fragmentation, while others may have five distinct personalities. Individuals with DID can also have an age slider, which means the alter can switch between their different ages.
There is also a variation in how an individual with DID chooses to deal with their condition. For some, the goal is to become a singleton, or a single personality. Some individuals with DID establish a system. The individual with DID who has a system may benefit from the different alters. Their goal in therapy is working together using cooperation and clear communication. Overall, individuals with DID want to heal the trauma that caused the brain to split and manifest their different personalities.
Regardless of how a person wishes to identify with their condition, DID presents many challenges that others may not even think about.
What are some challenges that people with DID face in daily life?
There is so much pressure to hide the condition due to stigma.
Some individuals with DID find the pronouns “we,” “ours,” and “us” more accurate than a singular he/him or she/her. They may have to find excuses for talking aloud in public. People with DID may only use labels with trusted friends and professionals. However, in daily life, this choice may not be an option. The different personalities all know their legal name and can respond appropriately when needed, but many individuals with DID do not believe it is representative of their feelings or experience.
Many individuals with DID discover the diagnosis after noticing changes within their daily life. For example, separate ways of writing, distinct types of dressing, or medical conditions depending on what alter was present. Individuals with DID work hard to manage their alters and all of their diverse needs.
It would be much easier for people with DID to live with their condition if others understood more about them and their experiences.
What do people with DID wish others knew about them?
People with DID have emotions and bad days just like everyone else. The difference is if they have a difficult day, they may experience switching between alters.
There are simple things that everybody else takes for granted that can be impossibly difficult for individuals with DID. Innocuous things can be triggers. It is a struggle to live and fit in with a world that is not made for them.
However, there are things that you can do to help support an individual with DID. Change the wording from “do you need any help?” to “how can I help?” or “how can I support you?” They may respond with, “I just need you to listen.” This is a more open-ended question, allowing them to articulate what they need. This advice goes beyond just people with DID, but to anyone who is struggling, whether it be grief, depression, or anxiety.
Often, individuals with DID are learning, growing, and trying to figure their lives out.
They want to live life like everyone else. It is important to extend kindness because everyone is dealing with something. The DID community does not want to be criticized or judged by others, and they do not want to be told how they should live. Individuals with DID identify as “broken” but “broken crayons still color too.” Once again, it is crucial for others to understand that individuals with DID work very hard to manage their alters and their diverse needs.
Often, some people are further along in their DID journey than others. For people who are just starting to understand their diagnosis, it would be helpful to get advice from those who have grown and learned more about how to cope.
What advice would other people with DID give to someone who was just diagnosed?
“You are not alone.” And do not be afraid to be you.
At the same time, do not tell the wrong person, because others can take advantage of you. Find someone who you really trust, whether that is a counselor, a friend, or family member. Find your crew, your tribe, and your safe spaces. Do not let anyone tell you who you are supposed to be.
If being you means that you integrate into one person, that is wonderful. If it means that you live with a system of alters, that is fine too.
It is not an easy journey. But life is never boring with DID-- every day is different.
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We appreciate the opportunity to learn more about individuals living with DID. By reading this article, we hope that readers can feel like they understand more about the disorder and extend more compassion for those with mental illnesses in general.
Our next blog posts will potentially include interviews with interns at INtegRIty (both master’s and bachelor’s level) or people with stories that are under-represented. Thank you for reading, and we hope you will look forward to what we have coming up next!
The paintings attached to this article were created by an individual with DID, inspired by their own life and experience.
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