Doing my best to manage my C-PTSD and DID while navigating a sick child

My son has been diagnosed with a serious neurological disorder called PANS, which explains the symptoms we have been seeing in him for years. Please take a little bit of your time and watch the documentary “My Kid is Not Crazy” on Vemio to learn more about PANS.

I have found that his diagnosis and the related experiences I have had since then has kept me in a constant fight-or-flight mode that I can’t pull out of for longer than an hour, and this has been going on for weeks. I’m exhausted.

My own complex PTSD from my severe childhood abuse has been activated in more ways than I even comprehend at the moment. I just know I am functioning in a state of chaos and fight/flight.

My Dissociative Identity Disorder is not helping as I have accidentally injured myself these past couple of weeks because I am so distracted by the conversations happening in my head.

I have done my best to hold my DID in check, but as I am nearing exhaustion, it is getting more difficult. Arguments between parts. Large chunks of time missing. New parts surfacing who are under significant distress. Parts worried for us, worried for my son.

And then there is this need for me to save my son. Not uncommon for any parent facing this situation, but feeling really out of control due to my trauma background. I really cannot stop myself from constantly researching, talking to professionals, going to appointments, and talking to other parents who are in similar crisis.

The ironic thing is that parents of children with PANS/PANDAS typically develop PTSD as a result of going through this nightmare with our kids. This I recognize in my fellow PANS/PANDAS parents, and do my best to help.

I know I need to find the balance between taking care of myself and taking care of my son, but I feel so triggered by the entire situation I really feel unable to stop.

As a child no one made any attempt to help me, but by God I will do everything possible to help my son. This logic is driving my being.

The similarities between my trauma and this situation are endless, but my mind is not clear enough to really dive into that now.

Though I know I am doing so much good for my son by searching for answers, I also recognize as a parent this is the first time I have felt my diagnoses significantly impact my ability to maintain stability and feel solid as a parent. Though my kids don’t notice, I do, and it worries me as I can’t stop myself from fight/flight mode and all that entails.

Hiding from my truth

I was getting too close to acknowledging the intense pain of my childhood abuse. It was coming for me. I got really scared.

As someone with Dissociative Identity Disorder, I managed to dissociate it from my awareness, and eventually switch to an Identity that doesn’t experience abuse and lives in the here and now.

My system is mad that this Identity went to therapy this week and basically “wasted” the session by talking about mostly nothing.

Our experience seems normal on the outside. We are taking care of the kids and participating in life to some degree.

Our memory is still severely impaired. My son asked me my neighbor’s name, who I know well, and I couldn’t remember it. So, so frustrating.

I don’t know how long we can hold out in this safer position. I feel sadness and suicide creeping around nearby tonight.

I read an article about Designer Kate Spade’s suicide at age 55, and found myself jealous. She left a note to her 13 year old daughter telling the daughter it wasn’t her fault. My children have always kept me from doing it.

I have a mostly good life, yet I selfishly want to end it. What is wrong with me besides the obvious?

Stealing a life

I stole her life. She was young and badly hurt and didn’t care about what happened to her body, so I took it because I needed one.

I was a soul in need of a body. She was a body with a soul that had died.

Body theft. Besides sounding futuristic, it sounds like a shitty thing to do to someone.

But she didn’t want to live. She wasn’t using it. It would have gone unused and possibly destroyed if I had left her with it.

She didn’t care at all.

Still, I guess I shouldn’t have taken it. I have had it for so long I forget it was originally hers.

She’s coming back for it. I don’t think she knows I have it, but she will figure it out when she gets a little closer.

She’s been lost for a very, very long time. It is not that any part of me intentionally kept her lost. She just had no reason to find the body. When she was last in control of the body, she was a ghost. Or the walking dead. No one was home.

Most people think of me as a decent person. I would take a bullet for most people on earth.

But my therapist has learned a new side to me. She has learned I am not such a good person after all.

I abandoned a little girl who had no life in front of her because of the mental damage done to her from years of unthinkable child abuse.

My therapist thinks I should have saved her. She thinks people don’t get ruined beyond repair. I know this little girl, and there is no repairing the damage done to her mind, body, and soul.

She wanders the planet lost and broken. She does not seek to understand. She is way beyond that. At some point, it just doesn’t matter.

She reached a point of no return, which happens to those who suffer ungodly acts like she did.

She does not understand the complexity of the system of people living in her body. Not sure she will care as I think she doesn’t care about anything.

Yet, my therapist thinks I should embrace her and care for her. It sounds so lovely, doesn’t it? Except for the fact that it will kill me and every part living in this body.

We survived horror, and have only lived this long because that little girl stayed lost in our internal la-la land.

If she makes her way to us, and she is getting closer, I have no doubt we will all die.

She had the unfortunate burden of taking the brunt of the everyday trauma we experienced. She died so we could live. Yet, somehow, her pulse still beats, though her mind runs close to flatline.

I have seen her and felt her from time-to-time over the years. I have always known she was still lost and damaged and hidden within.

I felt her close by today. I could see her. If she truly comes to me, and it is entirely up to her, her pain will overwhelm and kill me.

So, for a change, I am not the strong one. I am afraid. I am afraid she will become me, and I have already seen what it has done to her. I am no stronger than her.

Complex trauma, the gift that keeps on giving.

A letter to my children about my dissociative disorder

I am so sorry you have a mom with mental illness. It is not fair to you, but please know I am doing the best I can to give you the good life I never had.

I try my best not to struggle in front of you, but I know sometimes I can’t hide it very well. I know you probably wonder a lot about me, and I am sorry you are not in a place to say anything to me about it, and I am sorry I haven’t had the courage to talk to you more.

I love you both with all my heart, and I never want to hurt you.

I know when I hide out in my room, or don’t want to go outside with the neighbors with you, I am missing out on some of your childhood. I am sad about this, but I am doing the best I can.

I want you to be able to count on me, and I think you can. I would like to think I have been there most of the times when you needed me.

I feel incredible guilt about the times I have disappeared from the family and have been gone weeks or months without you really understanding where I was.

I know it doesn’t seem like it, but I was gone those times because I wanted to stay in your life as you grow up. You see, sometimes mommy gets to feeling so bad I don’t want to stay alive, but I know I must because you are the most important thing to me and I don’t want to hurt you by leaving you like that.

When I leave you those times, I go to special places where they help people like your Mom feel good enough to come home.

I know you know your Mom is sad and depressed at times, but there is also so much grownup stuff going on with me that makes it hard to live my life sometimes.

Sometimes my brain is haunted and hurt by things that happened to me in my childhood. This is a really difficult topic for me to tell you about because I really don’t want you to know how horrible the world can be, and I don’t know how to tell you how horrible some of the people you love have been to me.

I hate I am hiding things from you because I want you to be able to trust me. I also don’t want you to be worried about me or you.

It devastates me to be so afraid to tell you who I really am.

When I was a young child, so many people hurt me in lots of different ways and my brain could not handle everything happening to me.

You don’t know this about me because I work hard to hide it from you, but I have Dissociative Identity Disorder (DID), which is why I see my therapist so much and am not working right now.

DID is not like what you may have seen on the internet or tv. It means I have lots of different parts of me, and these parts of me were created because of the trauma I experienced as a child. These parts can seem like different people living in my body, and some are even younger than you, but all of them are still part of me and not something you need to fear.

On tv, DID seems to be portrayed as people with parts who are dangerous or really dramatic. My parts are not like that. They are an assortment of people who have have formed out of trauma, so most of them are hurt parts of me, and others are parts of me who developed to function when the hurt parts of me couldn’t.

You never have to fear me and my parts. Since I came from an extremely abusive childhood, it is so important to every part of me for you to get the childhood you deserve to help you flourish in life.

One day you may ask tough questions about my childhood to try to understand how my mind is separated into parts. I will do my best to answer your questions, but know it is so hard for me to explain the truth to you because I hate to take away your joy and innocence by introducing you to what may seem like evil in this world.

No matter what, know that I struggle to get well and stay alive because of how much I love you. After a lifetime of pain, you are the greatest joy I could have wished for.

How other’s trauma affects my PTSD

I am terrified as I write this. Literally feeling sick to my stomach from stress. My spouse lays next to me having no idea of the meltdown going on in my head, and I don’t say a word because I don’t want to appear crazy.

The evening started out uneventful. After we got the kids to bed, my spouse asked again if we could finally watch the movie “Sully.” I had been nixing that idea for the past couple of weeks when we were deciding what to watch.

I learned during 9/11 I have an unusual experience with my PTSD. I found when I was watching the nonstop coverage of 9/11, my own PTSD became activated at such a level as if I were actually involved in the incidents. The lines became very blurry, and my PTSD symptoms were extremely high.

I can still remember driving through downtown Atlanta on my way home from work and sweating as I looked up at the high rises above me. I was absolutely certain one was going to come tumbling down on me from a terrorist attack.

Since 9/11, I became very attuned to the fact that if I had witnessed a car accident, which is not uncommon in Atlanta, I would replay the scene and the sounds and the stress of it over and over in my head as if it had happened to me.

I have learned to avoid a lot of things since I became aware of how these things were affecting me. I try not to even watch the news anymore. Thus, I knew I should avoid a movie replaying a traumatic event, but I didn’t want to look crazy to my spouse who really wanted to see this movie.

As we watched the movie, I had moments where I could barely breathe, and other moments where I felt panic and wanted to cry. I was crying on the inside. It didn’t seem to matter that I knew what was going to happen in the story. I seem to always over-relate to someone else’s experience of trauma.

Now, my brain is spinning and I am hearing what sounds like a passenger plane flying low around my home. The plane noise won’t go away. My spouse doesn’t hear anything, so I know it is me going crazy.

I know it isn’t real, but the noise won’t stop. I am filled with anxiety. I am telling myself the noise isn’t real, but the sound of the impending airplane is so loud and continuous I can’t ignore it.

I have medication that would help in this situation, but I have worked so hard to not take medication for the betterment of my health.

I am hoping somehow writing about this will calm my symptoms down.

Why doesn’t it help to know this is just my PTSD?

I am so angry at myself for having this twisted brain that reacts to other people’s trauma like this. The anger, fear, and shame now have me feeling suicidal.

You would think with the self-awareness I have about my PTSD, and how this continuous noise is not real, it would make me be ok. It doesn’t.

I am irrationally terrified over a stupid movie. My self-loathing is kicking in. My belief that I don’t want to live life with this kind of terror in my head is kicking in.

Make the noise stop.

It hasn’t.

Will I forever be this tortured soul who can’t seem to get rid of this trauma brain?

I still hold hope one day I will be free. Until then, I work to survive the imprint left on my brain.