I have a rare mental illness that is extremely misunderstood. It makes me feel isolated and alone, so I’m hoping maybe some people will read this and learn something. I have a dissociative disorder caused by chronic childhood abuse. When I say “dissociative disorder,” people usually don’t know what I mean, and I’m scared to elaborate from there. I don’t tell many people. Some of the people I’ve told have betrayed my trust and told others. I’ve been ridiculed, judged, and some have tried to use it against me. I can’t help the way my mind survived the trauma. If anything, I think I’m strong. I’m just a little different.
For people not familiar with dissociative disorders, they consist of three different types: dissociative amnesia, DID, and depersonalization/derealization. Memory problems are a big part of my life, but it’s a bit more complicated than that for me. I have huge gaps of my childhood where I remember nothing. A lot of my childhood is pieced together by photos and stories told by family members. Of course, they never told the stories that caused my mind to shatter. Those started to slowly surface when I was 18 and moved out of my parent’s house. This was when I finally felt safe for the first time.
I think I’ve been depressed and anxious since I was a kid… I have some memories of crying and feeling alone in elementary school. I always felt a heavy weight on my chest. But I had friends, got straight A’s, and dated boys. I was athletic, loved art, music, and writing, and my teachers liked me. I did everything I could to be a good kid, to the point of perfectionism. I think I subconsciously hoped that if I made my parents proud, maybe the abuse would stop. Of course it never stopped, and my high level of functioning fell apart freshman year of high school. I became extremely depressed and suicidal, and my parents were furious when my English teacher showed the guidance counselor a poem I’d written about a graveyard. They told my parents to take me to get evaluated. Then I was forced to go to counseling. This started decades of my involvement in the mental health system. The problem with my condition is that if it’s not diagnosed correctly or adequately treated, patients don’t usually get better.
At age 15 I was placed in a day treatment program instead of high school because my self harming was out of control. I had intrusive suicidal thoughts through images and voices that told me to kill myself. When people asked me why, I said I didn’t know, I just wanted to die. I saw a lot of therapists and psychiatrists. My moods changed so rapidly, they thought I might have rapid cycling bipolar disorder. Lithium and other mood stabilizers did nothing. I had sudden seizures that would last minutes, and I would sometimes become paralyzed. I had chronic headaches, chronic bronchitis, amenorrhea, and other physical signs of stress. I didn’t tolerate antidepressants well, they made me agitated and anxious.
My first inpatient psychiatric hospital stay was in an adult unit at age 16 for suicidal thoughts and self harm. It was scary at first, but I got used to it. I remember the staff took my cigarettes from me and wouldn’t let me smoke them because I was under age, so I’d hide in the bathroom and the other patients would pass me some. One of my stays in the psych unit was so long that the school bus would pick me up at 6 AM at the hospital and take me to high school. Then they’d drive me back to the unit at lunchtime. I guess they wanted me to still maintain some small piece of a normal life and get an education. The nurses would wake me up at 5 AM and walk me down to the bus. They’d save me food and ask me how my day was when I got back. My life has clearly never been normal. I’ve been hospitalized for suicidal ideation and attempts over ten times, however the last time was 13 years ago. It’s also been that long since I’ve self harmed.
When I was 18, I was first diagnosed with Dissociative Identity Disorder. It used to be called Multiple Personality Disorder. Ahhh, right, now your brain is spinning a little. You jump to what you know from media, movies, jokes, etc. It’s not good, is it? We’re often portrayed as violent. This is so wrong and makes me feel sad and alone. I wouldn’t hurt a fly. Seriously, I can’t even kill bugs. When I was a kid, probably 8 or 9, I couldn’t eat animals anymore, and I’ve been a vegetarian ever since. I’m also a damn good mom.
But it definitely makes life challenging at times. When I was first diagnosed by the therapist who had observed me in day treatment for three years, I wasn’t convinced. I asked her to send me to a specialist. I read books, but they didn’t help, and I didn’t act like the women in those movies. It’s been 20 years since that first diagnosis, and two more therapists have also said that I have DID. However it wasn’t until early 2019, when I found a book called Treating Trauma Related Dissociation, that I couldn’t deny it anymore. (If you’re a therapist, I strongly recommend you read that book. If you’re someone who was diagnosed with a dissociative disorder or have questions about it, read Coping With Trauma Related Dissociation. They’re expensive books, but the ebooks are more affordable).
So I guess that’s more than enough information for now. Hopefully you remember that I’m the same person I was before you my diagnosis. And if you don’t know me, maybe you’ll stick around anyway to learn more. Thank you for reading so far. I definitely have plenty more to explain about chronic trauma, PTSD, attachment issues, dissociation, and DID. I also have some funny stories. I have to laugh at myself sometimes because it’s hard being alone with this. When people make jokes about being crazy, they often joke about voices and multiple personalities. I’m not psychotic, and I don’t lose touch with reality. But their jokes make me feel ashamed. No one should ever have to feel ashamed for having a mental illness. This is a survival reaction to trauma that I’ll explain more about in my next post. Breaking the silence and talking about it helps alleviate shame a lot. I’ve realized that people’s compassionate acceptance of me as I am helps me to let the shame go. And I hope I can help others by sharing this information. Being misdiagnosed or mistreated only makes the struggle to survive even harder.