The Most Difficult Symptom of My Dissociative Identity Disorder

I live with debilitating amnesia every day. I can’t remember what I did hours ago and definitely lose my place in time, like not knowing what day (or year) it is, and whether I did something yesterday or if it was really three days prior.

It is an infuriating aspect of my dissociative identity disorder (DID) that I try to compensate for so I can function in the world and people won’t suggest I get locked away.

Since I have DID, most people believe that one with DID can’t remember because they have switched into another part and “lost time,” as we like to call it in the DID world. This is not true for me. I have loads and loads of trouble remembering things that happen when I know I was present for them (not switched into another part).

Some people have theories about how my DID influences my amnesia, but at the end of the day they are just theories, and I have no idea whether they are true or not. I have had DID therapists suggest at times I have “cognitive problems” because they couldn’t make out why I have this severe amnesia and still seem to be present. The way I experience amnesia is definitely not the way it is written about in textbooks regarding DID.

Sometimes, I feel completely lost in the world because my amnesia is so bad. It does fluctuate on how severe it is. Sometimes, I can’t even remember the names of people I have known for years on one day, and then the next I have no trouble remembering names. I use Google all the time to give me clues to things I need to remember. I am betting Google didn’t realize this use of its product.

I don’t believe it is a cognitive problem because there are days when my entire brain is sharp as a tack and I can remember everything. This confuses the therapists even more.

My best friend with DID shares a similar plight. Sometimes it is funny to watch her experience the same struggle with her memory, but other times it is scary to realize how much we have to hide and develop strategies to “pass” in this world as functioning. Sometimes, we both just laugh and laugh because neither of us can remember the subject we talked about yesterday that was so important to the both of us.

I have learned that these missing current memories are in my brain — I just need prompts for me to be able to retrieve them. Oftentimes, if someone starts giving me some clues, I can piece it together and voilà, I can actually pull out the complete memory. If I don’t have clues, I might never be able to access it or even know what I am looking for.

In some ways, people would consider me “high-functioning DID” at this moment because the cracks in my mind are mostly hidden. People think I am doing OK because I am getting out bed, making all my appointments, not feeling depressed or overwhelmingly anxious, taking care of my kids, and in general participating in life.

What lies beneath that high-functioning DID is a stressed-out system trying to maintain that appearance and not get “caught” by someone for how little I can remember. With the amnesia comes simple things, like remembering to eat or go to the bathroom. The messages that should come from my body to my brain somehow get hijacked, which is why I often only end up eating once a day.

I think, because I struggle so much with my memory, I have been a strong advocate since the beginning of this year for healing the mind, body and spirit as an overall approach to DID healing. I simply don’t believe talk therapy is enough for all the faulty wiring going on in my brain. This is not talking bad about talk therapy or myself, but more of the truth of all the baggage that goes along with exposure to severe trauma as a child.

I did about 15 sessions of neurofeedback recently, and I believe this has helped my brain function better considerably. I am less anxious, less depressed and feel mentally sharper. But still, I struggle with my memory every day to varying degrees.

I will continue doing therapies that are designed to help my “trauma brain,” so I can function better. Even though this will not be the cure to my DID, it definitely makes it easier for me to function from day to day, and thus makes the recovery work for my DID more stable.

For some reason, people don’t talk enough about the amnesia that goes along with DID. For me and many others, it is really one of the most debilitating aspects of having DID. It would make for a boring Hollywood movie, I suppose. But outside of Hollywood, we should raise awareness about this amnesia so that we can get clinicians and researchers working on getting a better understanding of it, and hopefully with that understanding, more therapies to address the problem.

My amnesia is one of the reasons I would like to integrate my parts. I feel like, if all the parts of me were together as one, this missing or lost information wouldn’t happen. It’s just my theory, and why I am working so hard to heal my parts.

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Photo by Tom Ezzatkhah on Unsplash