Dissociative Identity Disorder: DID The Truth Lies Within
Is it real? Is this all in my head? Why can’t I remember? I can only imagine what it must feel like to have Dissociative Identity Disorder (DID). There is so much controversy surrounding this disorder, even among professionals. What it must feel like to be a person living with this day in and day out. So much misinformation out there on the web and YouTubers who say they have DID and even showing a “switch” happening can definitely add to the confusion. DIssociation is a major part of DID, but just because you dissociate does not mean you have DID. Today let us focus on the facts, real life experiences and treatments for those with this confusing and controversial disorder.
FACTS:
First of all, what is DID? DID was called multiple personality disorder up until 1994, when the name was changed to reflect a better understanding of the condition. It is a rare condition, generally developed during/after severe childhood trauma as a way for the child to cope and understand what is happening to them. It is characterized by a distinct separation of identity, with at least two distinct personalities or alters as we call them. These alters have their own identity, personality, and history. They can be male, female, or non-binary, any age, and often perform a specific function within their collective community. Some are children who play which brings peace to the community, others are protectors and come out when the host is upset or triggered in some way, while still others can be very nurturing. But not all alters are positive. Some alters can have a very dark and cynical side as well.
So how is DID diagnosed? As a clinician, it is not an easy task to diagnose someone with DID and I will not do it without a lot of supportive information from family and friends, and additional research. I tend to be fairly skeptical if a client comes to me and tells me they have DID, unless they have been diagnosed prior. It has been my experience, the client (or host) does not even understand what is going on at first outside of the memory lapses, missing gaps of time, and feelings of dissociation. After gathering supporting information, I can formally diagnose with the use of my diagnostic manual. Per the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the following criteria must be met in order to formally diagnose DID:
- The individual experiences two or more distinct identities or personality states (each with its own enduring pattern of perceiving, relating to, and thinking about the environment and self). Some cultures describe this as an experience of possession.
- The disruption in identity involves a change in sense of self, sense of agency, and changes in behavior, consciousness, memory, perception, cognition, and motor function.
- Recurrent and frequent gaps in memory, important personal information and events inconsistent with ordinary forgetfulness.
- The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.
- The disturbance is not part of cultural or religious practices and is not attributable to the physiological effects of a substance.
EXPERIENCE:
Now let us hear from a client who has been diagnosed with DID. Understand, every person’s experiences may be different, but the underlying symptoms are often the same.
What has it been like living with DID?
That is a very loaded question. I can tell you it isn’t what a lot of people think it is. First of all, it’s a disorder, so it really disrupts your life even after you are diagnosed. Some days I wake up as myself and I’m able to be productive, and other more turbulent days someone else takes the helm and my capabilities as a person completely change. For example, if a small part (or little) is present, my ability to care for myself is significantly reduced. Essentially, you can kiss any sort of productivity or adult responsibilities goodbye until an adult part comes out. Contrary to popular belief, most of the time internal communication is minimal at best so managing this illness takes a lot of discipline and work.
I think what a lot of people don’t seem to realize is how distressing this mental illness is. The term “alter” conjures up images of quirky helpers whose sole purpose is only to protect the “host” of the system. The reality is a bit more complex than that. Triggers can be unexpected and mundane, and truth be told we have disagreements among ourselves about how things should be done. In addition, we all seem to have situations and emotions that someone else is better suited at handling. So if we must look at it in such simple terms, we protect each other in a sense, just in different ways. However, this mechanism causes distress as well because you lose time, and receive feedback that you behaved a certain way with no recollection of having done so.
How old were you when you noticed something was different and how did you manage that?
Truthfully, I didn’t even acknowledge that I had anything wrong with me mentally until I was an adult. You see, when you grow up with something being normal to you, it isn’t until you have some outside context that you begin to realize something isn’t right. Once I was out of my abusive household, things began to really come to light for me, as is common with people who have trauma. However, it wasn’t until about eight years later that I would receive the DID diagnosis. Before that point, I think that I managed in the best way that I could at the time. Often I would blame my symptoms of dissociation on other factors, such as blood sugar fluctuations with my type one diabetes, but I think my mind was just trying to make sense of it all so I could function on some level. DID is a covert illness, so my mind would try to find and cling to any excuse except the actuality of the situation. Even now, I struggle with some level of denial, because the brain constantly wants to regress to old habits.
Many therapists believe you need to integrate the alters with the host’s personality. As a person with DID, what is your take on that idea?
I think it largely depends on the patient. There are some, such as those who also have bipolar disorder, who may not be able to fully integrate their most prominent alters. Attempting to force that upon them could cause unneeded stress and discourage them from continuing with their therapist. I think the clinician should look at their patients individually and assess what would be in their best interest as a whole. If the patient can live a fully functional and healthy life with alters, then I see no reason as to why integration is absolutely necessary.
What advice would you give to someone who thinks they may have or has recently been diagnosed with DID?
First and foremost, if you believe you have DID, I highly encourage you to seek a therapist as soon as possible. There is a significant chance you may actually have another disorder entirely, as a key factor in the condition is that it truly is covert. Only a trained professional is going to be able to assess you properly and give you an accurate diagnosis. Self-diagnosing yourself with the wrong illness will severely hinder your healing process, and make it difficult to obtain the help you truly need.
Ironically, my biggest piece of advice for anyone (caretakers included) is to stay away from the internet as much as possible. There is an entire mess of misinformation out there, solely based upon personal experiences and with little scientific backing. If you simply must seek information on the web, NAMI.org is an excellent place to start. There is also a small but highly vetted subreddit that I help moderate called DID Toolbox, which offers information and helpful advice for those living with DID.
TREATMENT:
Treating DID is about as controversial as the disorder itself. Do you focus on the symptoms or the trauma that created them? Do you integrate the personalities or leave them alone? The answer is…YES! Ultimately for me, I have my clients take the lead in their treatment. They are the ones who are living with it day in and day out. Some want to integrate which means focus on the trauma which created the symptoms and alters in the first place with the use of trauma focused therapies such as EMDR or IFS, while others enjoy the unique personalities each alter has and would rather learn to work with them as a team approach by using therapies like CBT or DBT. No one way is better than the other and there are a multitude of treatment modalities that can be used; it truly is up to the individual and their counselor to find what works best for them. Also understand that treatment does not always mean a successful outcome for every person. Each case is unique and DID is quite complicated within itself.
Psychotherapy is usually the recommended course of action for treatment, but often with the addition of medication management and case management. In some cases, the need for inpatient treatment may be utilized to help with stabilization then work with an outpatient psychotherapist. Because DID is based in trauma, treatment is slowly paced and can often last a year or longer.
If you or someone you love is dealing with dissociation and possible DID feel free to call Debra Winter, LMHC at Charmed Counseling for a consultation. You can also find reliable and accurate information through the Journal of Trauma and Dissociation at https://www.tandfonline.com/loi/wjtd20 or www.reddit.com/r/DIDtoolbox.
Written by Debra Winter, LMHC, LSWAIC, Clinical Therapist at Charmed Counseling
