Life with Dissociative Identity Disorder: An Ongoing Journey
Life with dissociative identity disorder (DID) is a journey full of new discoveries, growth and understanding. It is also a journey full of denial, confusion, and pain. Just when you think you have a grasp on life with DID, something (a new alter, or a new memory, perhaps) comes along and shakes everything up. Life with DID can be a difficult journey, but it's not an impossible one.
What Life Is Like Before a Dissociative Identity Disorder Diagnosis
Some people are aware of their DID before they are officially diagnosed. They may have researched their symptoms, or been told by a therapist that DID was suspected. That awareness provides an understanding of their symptoms. For others, however, life before diagnosis can be confusing. You experience different symptoms, but you really aren't sure why or what is causing them.
Before my diagnosis, I rationalized all of my symptoms. I told myself the memory gaps were due to bad memory. I attributed my chronic headaches and stomach aches to not eating well. The time loss I regularly experienced, that was just because I was tired. The voices in my head were just delirium. I lumped all of my other symptoms together with my posttraumatic stress disorder (PTSD) diagnosis, and that was that.
Putting a Name to Your Symptoms: Receiving a DID Diagnosis
Once I received my DID diagnosis, I started putting all of the pieces together. Now it all made sense. But my life didn't get any easier. I switched back and forth between denial and acceptance. As much as I longed for an explanation all those years, I started to feel the burden of what this diagnosis meant. I had to acknowledge the traumas of my past. I had to accept that my memory problems and time loss were more than just forgetfulness. I had to realize the voices I heard were real.
Even though the journey starts long before receiving an official DID diagnosis, a diagnosis is a key part. A diagnosis is affirming. It provides an explanation for your symptoms. It gives you a basis to understand what's going on inside your head. It gives you structure.
The Journey of Life with Dissociative Identity Disorder Is Unpredictable
Life with DID is consistently inconsistent. You never know what to expect. You can spend one year or five years working with your alters. Then all of a sudden, a new alter comes through and changes everything. Twenty years in, and you can experience a memory you've never had before. You can be present and grounded for a long period of time, then out of nowhere, two months have gone by and you have no idea what happened.
As I was coming to terms with my diagnosis, I mistakenly believed that everything I experienced at that point would be the same for the rest of my life. At that time, I was aware of just a few alters. I told myself, "I just have a few parts, I can deal with this no problem!"
I was wrong. More and more parts have come through as time has gone on; way more than I ever anticipated. It's unnerving at times. Sometimes, these new parts bring new, painful memories, and my life is temporarily turned upside down until I can work through the memories in therapy. I have learned now to just expect the unexpected, because no one else knows the exact journey I am taking -- not even me.
Life with DID is a process. A lifelong process. An ongoing journey. But it's a journey you don't have to make alone.
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Matulewicz, C. (2016, June 8). Life with Dissociative Identity Disorder: An Ongoing Journey, HealthyPlace. Retrieved on 2023, March 26 from https://www.healthyplace.com/blogs/dissociativeliving/2016/06/life-with-dissociative-identity-disorder-an-ongoing-journey
Author: Crystalie Matulewicz
I watched your YouTube video and found it to be such a wonderful resource/measure for me. I'm 48 and didn't realize the extent of my mental illness until just a few years ago. I had a particularly stressful few years: birth of a child, death of a grandparent, leaving my job, my father dying from a terminal illness and my older daughter's depression spiraling into suisidal ideation, depression, anxiety and manipulative behavior.
needless to say the chinks in the armor were wearing thin and no amount of rallying was going to make a difference.
long story short: after the most frightening dissociative experience of my life, I experienced severe ptsd. but I still couldn't remember what had happened to me. I began intensive therapy and emdr twice a week for a year until I called it off.
now I just feel hollow. I have met all the parts who've been there from childhood, yet I feel without "self"
the passion, intellectual curiosity, fun and crazy self is gone.
did getting treatment cause me to become a basically identitiless woman?
I feel so lonely and flat. being sane is no longer a struggle. but it's certainly not all it's cracked up to be.
good news is I haven't disassociated in many months.