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.

When my Dissociation makes me feel lost

It has been a long time since I have written anything. I have been doing some better, but struggling more than ever with feeling lost.

There are moments when I forget about my Dissociative Disorder, and then I am talking to a good friend about his son and I can’t remember his son’s name.

These moments of amnesia make me afraid to pose as normal to the world. I have thought about trying to go back to work, then I feel this inner flooding of anxiety.

I ask inside to my other parts what we are so afraid of about going back to work. Apparently, they just don’t think we can do it.

It is possibly true. I know I may seem like I am ok sometimes, but then I look back on my day and realize I only accomplished 1-2 things. On an intense day, I might have struggled to get a 3rd thing done.

I am not sure why I can’t get more done in a day, except for this damn amnesia and feeling confused and lost so much.

I have been trying my best to be present for my children as they both have issues going on and need me. Some moments I am good about that, other days I feel inner parts distance themselves from the children and contemplate suicide.

The therapy is a struggle lately. My child parts are so hurt and don’t understand why we are seeing the T less often. Our insurance would rather pay for hospitalization than outpatient care. Brilliant business people.

The therapist wants us to trust her, but the younger parts feel like she doesn’t care about us. The T struggles with this because she says she doesn’t understand what she can do to show parts she cares about them.

Then, the parts reveal that because she is not abusing us, she doesn’t care about us.

She says she is never going to abuse us, so she is never going to care about us?

Then there are older parts who say we should just stop going to therapy. This doesn’t go far because the Little’s surface and put us in a Little hurt state of mind.

Anyway, like I said, I am feeling lost. Don’t know what to do about much. Contemplating giving up my career and going to work for a low paying job or no job at all. Can’t seem to make any decision about that or anything else.

Lost. That is me.

My journey has changed

Some of you may have noticed that I have been missing in action for the past month or so.

I was really not doing well and needed intensive inpatient help with managing the symptoms of my DID and PTSD, particularly the level of suicidality I was experiencing.

I decided to go inpatient and it lasted longer than I expected. If I wouldn’t have really pushed to get out, I still easily met the criteria of someone who needed to be inpatient. But alas, I always feel terribly restless and triggered when I am inpatient, so a month was as much as I could do.

I am now happily home with my family and working to transition back into my real life. Still figuring this out and hope to share it with you as I uncover the new path of my journey.

I experienced incredible levels of amnesia and confusion while inpatient, but I was still able to gain some important insights into a new direction for my life.

I plan to share these new plans with you as I unpack myself back into the real world and my real life.

For now, I can say I realize I do have a life to live while doing this work, and I don’t have to “fix” my life before I can start living it.

I am also happy to say I am not currently feeling suicidal, which is remarkable because that is my typical normal. I know better than to get overly excited about this as I know it can change on a dime, but I do feel a sliver of hope that it is currently absent.

Speaking of hope, I did manage to gain some hope despite the incredible amnesia, confusion, transference, and uncomfortableness I experienced staying in this inpatient unit. Nothing like being locked up and power taken from you as a survivor that is seemingly required for inpatient treatment.

I am feeling well today and I am looking forward to sharing my new journey with you, and my experience during my inpatient stay.

Thank you from the bottom of my heart for all the support I received from you all.

With love and hope to you all,

Kathy

How DID creates uncertainty

This topic is laughable for me, but I am going to try to write about it anyway.

I feel uncertain, unclear, unsure, and confused throughout each of my every days. Those terms might all be synonymous, but I actually don’t know at this moment.

I am married, and I don’t know how my spouse has tolerated me for 20 years. She asks me what I want for dinner, and I don’t know. She wants to know if I want to go to such and such happening this weekend, and I don’t know. Do I need anything from the grocery store? I don’t know. What did I do today? Not really sure. How are you feeling? I don’t know.

The list is endless, and something she has to deal with everyday. Needless to say, it causes her a lot of stress.

Internally, it causes me a lot of stress, too. I try so hard to answer my own questions of myself, and I can’t come to an answer that sticks longer than 30 minutes.

As someone who experiences Dissociative Identity Disorder (DID), my brain operates very differently than a person who is what we call a “singleton.”

My life is like living in a giant high-rise apartment building. Lots of people live in my brain, and sometimes they stay holed up in their apartment, and other times they are out and about giving me advice or commenting on my life. These residents have the ability to influence my thoughts and behavior, and frequently I don’t even realize they are doing it.

Probably most difficult of all, my fellow residents have the ability to take my brain and body out for a spin, and they get to have their say with what happens in our life at those times.

My wife doesn’t always notice when this happens. Sometimes she just thinks I am in a different mood. She does catch me when one of the other residents acts very differently than me, like if they act like they are 8 and don’t know how to get food from our kitchen. She also catches me in an amnesia mess when I am under a lot of stress.

Recently I have been under a lot of stress dealing with suicidal feelings, loss, and trying to figure out if I need to go into a hospital for my own safety.

My feelings about all these topics change from hour to hour. Parts of me (other residents) can have really strong opinions about things, so my wife is rightfully stressed and confused when I tell her I am fine and not going into any damn hospital and ask her to stop talking to these places she has been trying to arrange care. The next day, I will often wake up feeling complete opposite, and lately haven’t had the memory for these conversations I am having with her when I am completely overwhelmed.

I get her frustration as I experience it with myself.

My brain is inconsistent and all over the place with things. I have a hard time distinguishing my thoughts and feelings from the others residing in our residence.

I can have a moment where I feel certain that killing myself is the answer to the situation I am in. Then later, I think of my kids and how I can’t do that to them no matter how much pain I am in. Other times, it feels like my kids are so far away from me that the voices in my head make sense when they convince me my children will be better off without me.

It’s a lot of daily confusion that my brain and body has become accustomed to.

I try really hard to know what I want or what is best for me, but the reality is I can’t figure it out.

This latest bout of intense suicidal feelings has been especially hard. Right now I am having a rational moment and am concerned by the thoughts and behaviors around suicide coming from me.

On one hand I know I should be in a hospital for my own safety, but the confusion starts when I begin thinking how oppressive, dangerous, and uncomfortable (they are cold, exhausting, you have to eat unhealthy food, they won’t let me take supplements, they won’t let my younger parts have a stuffed animal to comfort them, they have abused me in the past, they won’t let you leave, and they often want to heavily drug you). And these are only a few of the negative trade offs you get for staying “safe” by going to a hospital.

Days go by, and I have no idea what to do. This is how I operate. Heck, I scare myself when I realize my life is going by quickly while I am in this haze.

I struggle with whether I should make plans for later in the week because I have no idea if I will be home or in a hospital. I usually don’t make any plans, then I have missed out on more living.

In the meantime, I have engaged in suicidal behavior that I have kept completely secret because I don’t want others making this decision for me.

I know, it makes no sense. I can’t make decisions and don’t want others to make decisions for me either. It seems like my lack of decisions are safer than others making them for me.

Welcome to my world.

Missing memories

I am missing the memories of most of my childhood before age 12. What I can remember is about 90% traumatic memories. I know I probably had more than 10% of my childhood being good memories, but I don’t have them.

When I think back on everything I can remember from my childhood, I was always feeling fearful, even in moments where it doesn’t seem like there should be fear for any reason.

I can remember 3 memories when I was in kindergarten.

The first is remembering that the best thing about kindergarten was that on “your day,” you got to go out in the hall and finger-paint. I know it was a highlight for me, but at the same time I feel intense fear thinking about the memory, and the scariness of the hall I was in.

The second memory was when one of my best friends came to school without underwear on while she was wearing a dress. I remember how mortified I was for her, and I was fearful because I knew it had something to do with the community we lived in together.

The third thing I can remember was being in the kindergarten teacher’s office area with her and another teacher doing a lice check on me. I gathered from their conversation it was not the first time they had me back there for a lice check. I remember them being sure I had lice and stumped when they couldn’t find any. I imagine the lice check was because I was dirty and unkempt. It was a very shaming experience, and again I felt fearful.

For the next 5 years at school, I can only remember 3 or 4 memories, and all of those are very scary and traumatic.

When I turned 12, my parents had quit drinking and moved our family away from the community we grew up in, and we literally became new people who had pretend normal backgrounds. There was never any mention or recognition of the past.

For whatever reason, I didn’t think anything of it at the time. In fact, I didn’t think anything of it until a therapist of mine some 38 years later pointed out how odd it was that my family had done that. I just shrugged it off because I never had the expectation that my childhood and family should make sense.

As a very grown adult, it is super frustrating to not have memories of my childhood and a lot of my adult life. Even though my adult life has not been terribly traumatic by my childhood standards, I still can’t remember things all the time.

The answer to this problem as I have come to believe is that because parts of me did not developmentally integrate when I was in childhood, I need to integrate us into one as an adult. Or, at the very least get parts of me who are stuck living in past trauma into the present.

To accomplish integration or removing active trauma from our head, we have to remember and process some of the memories. This is a difficult task for someone who can’t remember as much as I do.

I have been pushing my system for memories for a while now. I gamed my system and forced the process. As a result, I recently had some new memories come in rapid fire succession.

The memories I had before these new memories were horrific, so I wasn’t particularly worried as I honestly felt like things couldn’t be much worse. I was wrong.

There was a reason those memories were being kept from me. It has been almost a month since they first came up, and they have ruined me. I can’t seem to pull out of this constant suicidal crisis for longer than 10 minutes.

The new memories have shook me to the core. It has made it so I am not who I thought I was. A parent who I thought loved me and cared for me was not that at all.

It leaves me feeling like I was truly nothing to no one growing up. No one.

It is a hard pill to swallow.

I got what I wanted. I forced memories to come that probably should have never come.

I honestly don’t know if I will survive this suicidal crisis I am in. Everyday I just barely scrape by.

I am not sure I want to exist with this new sense of my identity. I wish I could just shake it off and go on with my ok adult life. But, I can’t let go of my past, and don’t know if I ever will. And if I never let go, living this haunted life until the end is an awful existence.

I don’t know if anyone understands what it feels like to have this haunting day-in-and-out.

It is like living in sheer terror everyday. Who the hell wants that?

Switching between identities

Normally, I switch a lot during therapy because we are dealing with triggering material. Outside of therapy, it is usually more controlled and subtle. Sometimes, because I have co-consciousness with my other identities, I don’t even realize I have switched at first.

There are times when it is like the box of crayons (my identities) have been thrown up in the air and my identities don’t know which way is up. During these times, different parts pop up to “front” the body in no particular logical order.

In a system of other identities like mine (Dissociative Identity Disorder), there needs to be rhyme or reason to what parts are out when. For instance, certain parts need to be out for our children, as these parts know how to function as a parent. Other parts need to be out with my spouse, as these parts are in relationship with her, and are appropriate to have a sexual relationship with her.

This past week, my system feels like the internal house is burning down, and we don’t have the order and reason we normally do for who is out at any given moment.

My spouse, who knows I have DID, but doesn’t usually notice my switches, has definitely noticed this week. Little parts and angry parts and parts who like to drink alcohol have been out a lot. None of these ways is my normal way of being with her. Even though we have multiple parts who can be out with her, they are similar enough in a range of expressions that she knows what to expect.

The chaos and anxiety is high in our inner world. We are trying each day to tame it and get back to our normal. It sometimes seems like it is happening slowly, and other times feels like it is not happening at all.

I had a neurofeedback session a couple of days ago that was supposed to help with the depression and anxiety. It did help, but still the underlying chaos in my brain is still hanging around.

My memory is horrible right now. In fact, I can’t even remember what set us down this path we are on.

My spouse is being helpful and taking over more of the parenting jobs right now.

A couple of days ago I had my kids in the car and they had been arguing with each other and then both asking for something that I would have to say “no” to, and then listen to them both respectively melt down. Instead of saying no, I found myself not being able to breathe or talk. I was paralyzed. I said nothing. I fantasized about getting out of the car and leaving them there.

After that experience with my children, I knew I needed a break. I am usually rock solid with my kids. Instead, I was becoming paralyzed with anxiety, which is not helpful to my children, even though they didn’t even notice.

My switching is more like a Rolodex this past week. Rolodex switching is no fun. It is scary to go from identity to identity with no rhyme or reason.

To function at the level my life is set up for, I need to have more controlled switching. Otherwise, I will end up in the hospital and on the streets and lose everything I have fought to achieve in my small life.

It is funny, my private insurance company has denied my outpatient treatment, and even made it so my antidepressant is unaffordable. That’s fine, because I don’t like to take medicine anyway. On one level, I really believe they would like me to kill myself so they don’t have to pay for my claims anymore. But, if I don’t kill myself, it means my life goes backwards and they have to pay for inpatient treatment again, which is more than what it would cost for the entire year of getting me the outpatient treatment I need to avoid the hospital. Makes no sense, and don’t have the mental energy to keep fighting them.

I will do my best to hang on today. To try to move back toward our normal. It is unusual for me to be in this state of chaos for this long. I am worried, but I will probably forget that I am worried shortly.

Having DID is no picnic. It is not scary the way it is portrayed in the movies. Mostly just scary to the person who has it.

Living an inauthentic life

I grew up keeping my entire life a secret. I didn’t discuss with anyone the pain and abuse I was enduring. I also kept my internal world of other inside people a secret.

I knew it was not safe to discuss what was going on with me with others. I learned that my many abusers knew how to exploit me the more they knew about me and my inner system of people.

I would like to say this didn’t happen to me as an adult, but it did. When I was 21, I had my first psychiatric hospitalization for Major Depression, Anxiety, and severe suicidal ideation.

During this very lengthy hospital stay, a therapist on the hospital staff took a special interest in me. She would spend extra time talking to me, and made sure I knew I was special to her. Being 21, I had no idea the direction this was going.

I craved this attention from the hospital therapist, who incidentally was not my primary therapist. I wasn’t used to someone knowing the ugly truth about who I was, and still care about me. It was intoxicating.

It turns out, this hospital therapist was a master predator. She was one of the best I had ever experienced. She learned my inner system of people that began unfolding in front of her. She used that knowledge to exploit me sexually for 9 months.

The hospital knew what was happening and fired her to protect themselves. Sadly, the hospital and my private psychiatrist and therapist who were all aware of it did nothing to help me with the situation. They only worried about their liability in the matter. The betrayal of my private therapist and psychiatrist was worse than the sexual abuse I experienced from the hospital therapist.

So, trusting people with information about my inner world is really difficult. Everything I hear inside my head says to keep it private. The world can’t be trusted.

I live in this self-induced private Hell because I don’t want to be hurt any more. The worst part of this for me is that I don’t get to live an authentic life because no one truly knows me.

I have been married for 20 years, and you would think that person would know me. Nope. I hide things going on with me everyday.

I have pockets of people I can share different things with. My suicidal feelings are often the biggest secrets I keep.

I haven’t found it to be useful to share these feelings, and let’s face it, people don’t really want to know anyway. They say or think they do, but it only stresses people because they get scared about being powerless in the situation.

People would rather wake up one day to the news of my suicide thinking they had no idea. I am fine giving that to them.

Still, I hate living such an inauthentic life. No one knows the demons I wrestle with in my head. They don’t know the many people I share my body with that I must juggle. They don’t know the pain, anxiety, and desire to commit suicide I struggle with every day.

Instead, I do what I am used to. I ignore me and give everyone the me that they want to see. I can do happy or at least normal on many days. It is just another character role to play.

It leaves me in isolation where I am most comfortable. Some days I wish this wasn’t me, but the auto-pilot in me is strong.

Is my inauthentic life my own fault, or is it the wisest decision?

Maybe, one day I will live authentically, and my true struggle will be the story people know about me. That would be nice. Being a prisoner in my own mind is its own terror I subject myself to.