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.

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.

Parenting with Dissociative Identity Disorder

I am blessed to have two amazing children, ages 6 and 12. My spouse and I adopted both of my children at birth through open adoption (when the birth parents choose who they want to adopt their baby).

Both of my children are happy, healthy, and smart kids. My life wouldn’t be worth living if I didn’t have them in it.

Neither of my children know their mom has Dissociative Identity Disorder (DID). The older child does know that I sometimes gets depressed, and that some bad stuff happened to me when I was a child, which is why I am so protective of her.

If you have seen the television show “United States of Tara,” my life is nothing like that. My parts do not freely and recklessly interact with my children, and there is a reason for that. That show makes me cringe from a parenting perspective, though I know other people with DID disagree with me about it.

Every person with DID has what we would call a system of parts (or some might call them alters or alternate personalities), and every person with DID has a very different system at varying levels of recovery, functioning, and beliefs about the world and how they fit into it. This writing is only about me and my parenting beliefs and choices.

I have been diagnosed with this disorder for 28 years, and I have made incredible progress in creating a system that is less chaotic and more cooperative than when I was first diagnosed.

My system is less chaotic in that I do not switch to another part without any control or knowledge of what is happening. Usually, I switch under extreme stress/triggers, or when in therapy to work on trauma my parts have experienced. I can control which parts of myself are out with my children through the internal cooperation we have with each other in our system.

I also have co-consciousness, which means I am aware of what is happening when another part is out. I may not have control over what the part is saying or doing, but I do know what is happening. Not everyone with DID is lucky enough to have this ability, and I didn’t when I was first diagnosed.

My system is cooperative in that everyone in it knows there are certain rules in place when it comes to the outside children. For starters, we don’t let our outside children see any of the many inside children that live in this body. I knew this would be confusing to my children, so I made this rule early on.

As someone who was terribly abused as a child, it is extremely important to give my children the stable and loving life I never had. And every part inside of me agrees with this goal.

I don’t want to give you the idea that my life is a bed of roses and has no affect on my children. My level of functioning fluctuates, especially more so over the last 3 years. I was out of therapy for many years until a series of traumatic events happened to me, which unfortunately destabilized my DID quite a bit.

I experienced a Major Depressive episode about 1 1/2 years ago, and as a result I spent the better part of 17 months in my bed unless I absolutely had to be at an appointment or one of the functions for my kids. My kids noticed this change, and we talked about it with them giving them limited, and age appropriate detail. We also had the ability to have both of the kids in therapy to deal with any anxiety or other feelings they had about it.

My children have experienced me leaving for weeks at a time when my DID, PTSD, and Depression became too severe and I went to a treatment facility. This caused them a lot of anxiety as they worried whether I was going to go away again because I had to do it several times over the last three years.

My children aren’t aware that I have suicidal thoughts on a very frequent basis. My system of parts who often argue that suicide is the best way out of the pain we experience, will not make a suicide attempt when they are reminded how much this would hurt our outside children.

There was a time over the past 3 years when the intensity of my pain and psychological distress was so great that I did self-harm by cutting into my arm in hidden places. My oldest child accidentally caught a glimpse of a scar on my arm that had the initials of someone who hurt me. I lied about it and told her it was a scar from something else, and she never brought it up again, and my system made the rule that we would never self-harm again in that way. So far, we haven’t.

I go to therapy three times a week to work on the trauma I experienced as a child. Some days I feel the feelings I dissociated as a child, and they are awful, so sometimes the best thing for me to do after therapy is to go to bed to take care of myself.

Some days my PTSD gets triggered so severely I can’t function. This can cause younger parts of myself to be “out” in the body. This is when my spouse and I have to work together closely as a team.

Noises are a major trigger for me when my PTSD is activated. Having two young children doesn’t equal a quiet household. My spouse is really good at trying to shield me from their noise when this happens. Fortunately, my PTSD doesn’t happen to this degree often.

I do have other parts who interact with the children. These are parts of me who are adult, and who most people wouldn’t detect as different, and would just chock it up to me being in a different mood.

Sadly, I have parts of me who don’t claim any relationship or interest in the kids. They stay far away from the kids, and usually don’t pay much attention to what is going on with them. By far away, I mean they don’t come out for anything that has to do with the children.

In some ways, my children are better off because they have me as a parent. They get a super caring parent who understands things from many different perspectives. They also get someone who will fight for them like nobody’s business, and teaches them to fight for other, less fortunate people in this world. They have a strong sense of justice.

I do realize one day I will have to decide whether to tell them my story, and this huge piece of my life as someone with DID. I imagine when they get older I will tell them my story, but it will be super hard for them because they will learn some horrible things about people they love, and would never dream are capable of such horrendous things. That is a challenge for another day.

Parenting is by far the hardest job in the world. I didn’t get to pick my parents, and they caused me great harm. My children didn’t get to choose us as parents, and I hope they will always feel grateful for the love and kindness we have given them as parents.

I believe loving your children unconditionally, and all the time, is the best recipe for happy, healthy kids despite what other issues are part of the picture.

When your friend commits suicide

As someone who has suffered from suicidal thoughts most of my adult life, I have found myself completely unprepared to deal with one of my best friend’s successful suicide this past week.

My friend caught me completely off-guard with her suicide. I thought she was one of my friends in the “worried well” category, not someone who would actually commit suicide.

I don’t think I have ever had so many emotions boomeranging around in my brain since I found out. To say it has “triggered” me is an understatement.

I went to college with this friend, and it is so significant because both of us really helped each other figure out who we were going to be in life. We debated and explored different ideas about our future identities on a regular basis.

We were so excited about our futures. Anything seemed possible.

At one time we thought she was going to marry a man who would be a stay-at-home dad because she was so career driven in college. That didn’t end up being true at all.

We both came from dysfunctional homes and had the burdens and wounds that come with that to wrestle into our adult identities.

My best friend ended up working full time in a successful career and raising four kids on her own. She loved her kids more than anything, but something went wrong.

She hasn’t been living in the same town as me for a while, so I hadn’t been keeping in good touch with her. Mostly seeing random Facebook posts that made me think her life was okay despite the pressure and depression I am sure she felt ongoing after her marriage failed.

I am so angry at myself for not keeping in better touch with her. Like maybe somehow I could have saved her from whatever demon was eating at her soul.

I am so angry at her for doing this to her kids, though I am scared to know the reason she did this. I am terrified there might be more to her story than I want to know that made her commit suicide.

I can’t wrap my brain around this. I am “the weak one” with mental health problems. Suicide is my thing, not hers.

I have never felt so desperate to bargain with God to turn the clock back so I could have the chance to help her. I just want the chance, but I know it is too late, so I sit in shock and confusion some more.

Why couldn’t she reach out to me. I am right here, and would have been there for her in a second. I am angry at God for not giving me that chance, and I am sad that my friend didn’t reach out to me.

I know suicide intimately. I would like to think I have learned to tame it over the years, and could have led her out of that darkness.

My friend’s suicide has certainly helped me take it off the table for myself as a real option. I am mad that she had to commit suicide in order for me to learn how it feels to the rest of the world when someone does this.

As a mother myself, I can’t even fathom what this has done to her children. My chest hurts thinking about how she could do this to them, especially knowing how much they meant to her. They were supposed to be the kids for her that “broke the cycle” of family dysfunction and abuse, and yet my friend didn’t accomplish that after all.

I would be lying if I didn’t say this terrifies me for myself and my children.

My brain hurts trying to process this and go on with everyday life. I want to take a pill or drink some alcohol to numb myself, but I know that won’t really help. But sitting with these God-awful conflicting, mixed up feelings is like a form of torture.

I am sorry if I can’t think of something clever to say. My brain is barely alive, and my heart is broken. And my friend is dead, and there is nothing I can do about it.

Like my therapist always says, suicide is such a permanent decision. I wonder if my friend really meant it to be so permanent, or if she was just in so much pain she acted out in a fit of overwhelming emotion.

I will never know, and it so hard to sit with the permanency of that knowledge.

I feel so empty, hurt, sad, and angry. I pray to God her children will somehow have

decent lives and not let this ruin them.

Sadly, I know I can’t control this. And the permanency of her death is so final, which both infuriates me and paralyzes me.

Leaning toward love

 

I am the child of a sadistic, narcissistic, evil woman, so this is a day of painful emotions.

I am sad that I still play the pretend game and will call her later today to wish her a happy Mother’s Day. I will try to keep the conversation short as is always hard because she runs right over me with her words about herself, never listening to me.

But, I’ll get through this day.

My beautiful children will help. Their loving, smiling faces make life worth living. We are so lucky to have children who are the most beautiful angels it takes my breath away.

It amazes me that it didn’t take any special effort to not continue the cycle of abuse so many people talk about. It is natural to love and take care of your babies, which makes it harder to understand the actions of my parents.

I love my children more than anything else in this world. There is nothing I wouldn’t do for them.

I wish all moms could feel that way.

I am sorry for those of you who had moms like mine.

I am happy for those of you who are amazing moms, and also for those who were lucky enough to have a great mom.

A day of ambivalence. I will lean toward love. I hope you can, too.