My Dissociated Life

When you suspect you may have a dissociative disorder there are a number of ways you can determine what might be going on. For me, I started experiencing a number of terrifying symptoms and I took them to my therapist who suggested I fill out something called a Dissociative Experiences Scale (DES). The DES is a short questionnaire that asks about certain experiences and how often you experience them. The assessment then compares your experiences to those who have been diagnosed with other disorders to gauge the intensity of your symptoms and make suggestions about potential diagnoses. This is not a diagnostic tool on it’s own but it can help provide some insight into your symptoms.

Should I seek a diagnosis?

A diagnosis is not for everyone and is not necessary, but may help bring some validation or supports. Depending on where you live, diagnostics can be expensive and difficult to attain. In Canada, diagnostics can only be done by physicians (doctors or psychiatrists) or psychologists, which can lead to expensive assessment tools or long wait times for assessments.

It’s best to consider if you want or need a diagnosis as well as what the pros and cons would be of attaining one. There is no medication for dissociative disorders, only for the comorbid disorders such as anxiety, depression, sleep disturbances, or nightmares. Whether you are diagnosed or not, it does not change the treatment approach (lots of therapy), only the label assigned to your symptoms.

Diagnostics can help with certain things such as applications for disability supports in school, work, or social support funding available through the government. If your symptoms do not effect your ability to function in a full time job, that may not be a consideration for you.

Having a diagnosis may help you feel validated or understood, and provide you with more information about your symptoms and navigating your life, but that does not mean that you need an official diagnosis in order to seek out help from a qualified therapist for information and support. Personally, I sought out a formal diagnosis because I needed to know if I had DID or if something else was going on, as well as to help validate and explain the symptoms I had been experiencing.

Being diagnosed with a dissociative disorder has a negative side as well. There is a lot of stigma associated with dissociation, DID specifically, and an official diagnosis may create rifts with family, friends, medical professionals and other social interactions. Personally, I have been lucky and had good luck with doctors and others being understanding, however I have had it brought up against me in family court.

How do I get diagnosed?

Diagnosis usually involves a battery of psychological testing. I chose to approach psychologists instead of doctors because I was embarrassed and didn’t want my doctor to know, mostly because I didn’t know how he felt about dissociative disorders. Knowing there was no medical intervention for DID and I was already on medications for depression and anxiety, I preferred to go with the psychologist route.

I sent emails out to local psychology offices specifying that I needed an assessment for DID by someone who had experience with the disorder. I was very clear in the fact that I wanted to be diagnosed by someone that believed DID existed, specifically I wanted to know I didn’t have DID not because the diagnostician didn’t think it existed, but because I didn’t have it. Joke’s on me!

There are a number of different assessment tools used to diagnose Dissociative Disorders. Usually this involves a couple of different dissociative scales, scales for other mental health disorders (bipolar disorder, PTSD, ADHD etc), and interviews with the psychologist. The psychologist then looks at all of the results, interprets them and provides a diagnostic report. This can take a few weeks to get through depending on the availability of the psychologist but is usually about 8 hours in office and a few hours of take home surveys.

Now What?

Well, that’s up to you…all of you. Your system will know what it needs to feel safe and supported. Sit down and listen to what’s happening inside. Really pay attention to any fears, concerns, excitements, questions and boundaries you may need in order to proceed (or not!). You don’t need a diagnosis to determine your treatment. You don’t need a diagnosis in order to validate your experience. If you think it might help then go for it but it is not the only way to find supports. Your brilliant brain is brilliant, with or without a label.