The Problem of Misdiagnosis with Dissociative Identity Disorder
Finding a mental health professional who is a good fit is difficult for anyone. However, if you have dissociative identity disorder as I do, the chances of finding a therapist or psychiatrist who knows how to treat DID are minimal.
Dissociative identity disorder affects 1-2% of the population, causing it to be a leading cause of mental health problems. Regardless, DID is one of the planet’s most misdiagnosed and misunderstood mental health conditions.
In this article, we shall explore the problem of the misdiagnosis of dissociative identity disorder.
The History of Dissociative Identity Disorder
Dissociative identity disorder is not a new diagnosis that appeared in the 1980s without any history. Some people believe that the disorder hales back to the Paleolithic age when shamans painted cave images of people seeming to have more than one personality.
The year 1791 brought the first detailed account of an “exchanged personality” in a 20-year-old German woman who suddenly began to speak fluent French. The woman denied the existence of the other alter and that she spoke French.
More recently, in the 20th century, in the 1970s after the publication of Sybil, reports of DID rose, and between 1991and 1997, there were over 500 cases reportedly admitted to a dissociative disorders treatment facility in Texas.
Today, reported cases of DID have dramatically risen as social media platforms are full of misinformation and misleading posts of people claiming to have DID.
What is Dissociative Identity Disorder? (Briefly)
Dissociative identity disorder (DID) is a debilitating developmental problem that results from severe childhood abuse. DID forms in children before age 5-9 when a child’s personality pulls together into a unified whole.
First introduced in the Diagnostic Statistical Manual of Mental Disorders III1 as multiple personality disorder, DID burst onto the scene as a diagnosable mental health condition.
There are five criteria in the Diagnostic Statistical Manual of Mental Disorders, the fifth edition (DSM-5)2.
- Two or more distinct identities or personality states are present, each with a relatively enduring pattern of perceiving, relating to and thinking about the environment and self.
- Amnesia must occur, defined as gaps in the recall of everyday events, important personal information, and/or traumatic events.
- The person must be distressed by the disorder or have trouble functioning in one or more major life areas because of the disorder.
- The disturbance is not part of normal cultural or religious practices.
- The symptoms are not due to the direct physiological effects of a substance (such as blackouts or chaotic behavior during alcohol intoxication) or a general medical condition (such as complex partial seizures).
Dissociative identity disorder is a condition that changes the course of the lives of the people living with its effects.
Why is DID Often Misdiagnosed?
Dissociative identity disorder (DID) is often misdiagnosed, but the correct diagnosis is essential for anyone experiencing a mental illness. The chances for misdiagnosis are high for many reasons, including that psychiatrists and therapists receive very little training on the disorder.
Another reason is the stigmatization of DID as a fake diagnosis. Although research3 has found that DID is real and the DSM-5 has included it as a diagnosable disorder, there remain many mental health professionals who do not believe in dissociative identity disorder.
One of the biggest reasons DID is misdiagnosed as another problem, such as borderline personality disorder, is that diagnosis depends entirely on gathering information and observations of the client. It is incredibly difficult to tell someone who is malingering from someone presenting with DID symptoms.
I would argue that all mental health disorders are diagnosed in the same manner, and the symptoms can be and undoubtedly, in some cases, are faked.
On average, it takes seven to eleven years of wrong treatment before a person in the mental health system receives the proper diagnosis of DID. Suppose the attending psychiatrist or therapist gets the diagnosis wrong. In that case, they can delay treatment, put the person through years of unnecessary and improper treatment, and make many symptoms of DID worse.
According to the International Society for the Study of Dissociation (ISSTD)4, below are three reasons that mental health professionals get it wrong.
- There is a lack of education for clinicians about dissociative disorders and trauma.
- Most clinicians wrongly believe that DID is a rare disorder with a dramatic presentation.
- Standard diagnostic tools and other tests do not include questions about dissociation, post-traumatic symptoms, or trauma history.
It should be evident that receiving an accurate diagnosis of dissociative identity disorder is evasive but critical for healing.
There are pros and cons to receiving the diagnosis of DID. The best benefit is that one can receive help paying for treatment and sometimes qualify for disability in the United States. Another pro is that it is helpful and reassuring to put a name on the unusual and sometimes disturbing activities and behaviors one has noticed.
Two cons of receiving a diagnosis of DID are that it is highly debilitating and the unnecessary shame accompanying a mental health disorder. No one should be forced to feel shame over something they did not cause. Mental illness is nothing to be ashamed of, and dissociative identity disorder is no exception.
Finding Help
While it is vital not to attempt to diagnose oneself, finding help for dissociative identity disorder is an arduous journey. Do not depend on YouTube videos or social media sites to show if you have DID. They are full of misinformation and people who do not have dissociative identity disorder but claim they do.
You might visit many clinics and mental health professionals before you find someone who will treat you for the disorder you truly have, but that is better than getting the wrong information.
There are find-a-therapist sites where you can shop for a therapist in your area who treat dissociative disorders. If you cannot find one who treats DID, shoot for one who treats trauma or is trauma-informed.
Listed below are three sites that help find treatment in the United States.
Psychology Today
GoodTherapy
https://www.goodtherapy.org/find-therapist.html
Find A Therapist
https://www.findatherapist.com/
Listed below are some hospitals that Treat DID. It is vital to remember that you will not wholly heal while hospitalized in these treatment facilities. Their mission is to stabilize you and help you understand your diagnosis better.
Amen Clinics
https://www.amenclinics.com/conditions/multiple-personality-disorder-dissociative-identity-disorder/
The Colin Ross Institute
Sheppard Pratt
Do not discount the usefulness of your local psychiatric ward, as they are tremendously helpful if you are feeling suicidal or having suicidal thoughts. You must not be afraid to become an inpatient at your local facility, as they can stabilize you and perhaps get you on medications that can treat the many cooccurring diagnoses of DID, such as depression and anxiety.
Ending Our Time Together
The misdiagnoses that accompany DID make it tough to find a therapist or doctor who will treat it. So often, mental health professionals recognize the underlying coexisting diagnoses but disregard the person as having dissociative identity disorder.
My message to you is not to give up. Keep looking for the mental health professional who will help you heal from DID. The search may be long, but never give up no matter what.
Recovery and healing from dissociative identity disorder take time and effort, and begin the first time you pick up your telephone to call asking for help.
“Life isn’t finding shelter in the storm. It’s about learning to dance in the rain.” – Sherrilyn Kenyon
“When you have a dream, you’ve got to grab it and never let go.” – Carol Burnett
References
- American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5), Fifth Edn. Arlington, VA: American Psychiatric Publishing.
- Edition, F. (2013). Diagnostic and statistical manual of mental disorders. Am Psychiatric Assoc, 21(21), 591-643.
- Pietkiewicz, I. J., Bańbura-Nowak, A., Tomalski, R., & Boon, S. (2021). Revisiting false-positive and imitated dissociative identity disorder. Frontiers in Psychology, 12, 637929.
- Adult Treatment Guidelines (2011). International Society for the Study of Trauma and Dissociation. Retrieved from: https://www.isst-d.org/resources/adult-treatment-guidelines/
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