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.

Barely noticing I have been missing in action

I have been MIA from the blog and other areas of my life lately. As typical for me, I have to really think where have I been.

I think maybe I have not been present as much as other parts of me who have other interests and have been using most of our time. Sometimes I barely realize when this is happening.

I have had moments where I have thought I need to write a blog entry, but then I vanish before I am able to do that task. Since I am not as present lately, it leaves me kind of scattered to write a new post (like this one probably is).

I have also been solo parenting for the past two weeks and it has been unusually difficult. School was out because of winter weather, my kids have both been sick at different times,, and I have been dealing with some difficult and new material in therapy.

I made it to the finish line as my spouse is now back, thank God. I only almost had two nervous breakdowns as we were into the second week.

Parenting is not usually this difficult for me, so I was frustrated to feel this way while the spouse was gone. Oh well, the kids are alive, fed, and made it to school when they weren’t sick.

The spouse was only mildly irritated with me for the chaos in the house because of the way I do things when I am in charge.

I had a therapy session a couple of days ago that was unusual in that I kept Rolodex switching throughout the appointment. By the end, I was frustrated because the time evaporated quickly, and it felt like a very chaotic and unproductive session. I kept “waking up” during the session and said to myself inside “why am I talking about this topic?” It wasn’t until later that I realized that was happening because I kept switching between parts.

I suppose this was the rebound of doing the very difficult session prior to that.

Sometimes we need a break, and just can’t be all things to everyone. Hopefully, the distraction of other parts doing their things will enable us to eventually get grounded again and feel more present and less scattered.

Thank you to those who checked in on me. I am doing ok, and working on getting back to my normal.

I hope to have something more interesting to write about next time!

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.

My mother didn’t love me, and today I know that was her fault, not mine

I am at a place in my life when I hear another woman discuss what a wonderful mother she has, I tense up and freeze until the moment passes. My mind and body go blank.

Lately, I have described myself as feeling awkward around these situations. I don’t want to take away from someone else’s joyful relationship with their mother, but I truly cannot relate to it at all.

My mom never loved me. In fact, I think it is fair to say she hated me from the moment I was born.

I spent years and years trying to understand what was wrong with me, or what I could have done differently to have had my mother’s love.

It is so hard to sit with the idea that your own mother doesn’t have an ounce of love for you, and would in fact prefer that you be dead.

My mother loved my two older brothers, which made it even harder for me to process as a child.

On any given day my mother would show her hatred of me through her mean words or her sadistic and narcissistic behavior.

I would try so hard to be small and invisible so as to not provoke her, but it never worked.

She hated every ounce of me since the moment I was born, and maybe before.

I have known for a long time that my mother did not love me, but now I am reaching deep down inside me to face the realities of the pain and problems this has caused me throughout my life.

I struggle with loving and being loved.

It’s like the love switch is just turned off in me. I often feel like a robot, and sometimes when I do attempt love, I can get it very wrong.

As an adult, I do not long for my mother’s love. I gave up on that very early in childhood. I know who my mom is, and I want no love from her.

However, I have learned that the longing for a mother’s love does not go away.

I have tried to replace my mother’s love by unsuccessfully trying to get two different therapists to become my replacement moms. I tried to do this with therapists who have good boundaries, so it was a total flop. Plus, because I never had my mother’s love, I was clueless as to what I even wanted from these replacement moms.

People tell me the secret to recovering from this type of deep maternal wound is to parent yourself.

I still don’t have a clue as to how I would heal myself through parenting myself. I am not actually sure this is a real thing, but I have heard it enough.

For today, I will sit with the fact that my mom did not love me, it was not my fault, and it has caused me great pain and damage.

Tomorrow I will see my mom, and will lack human presence around her. I will probably have a moment of feeling sorry for her and thinking how pathetic she is. I will also feel very stressed as I secretly count the minutes until she is gone from my life again.

Even though I was raised by a horrible mom, I somehow managed to become a distant, but loyal daughter for her.

And by the grace of God, I managed to be a fairly good mom to my children, which is quite miraculous as I only had television to model good parenting for me.

Is my overwhelm just an excuse for laziness?

I am confused at the moment. I continue to struggle with who I am. I mean, I know who I am and what I believe usually, but the other pieces of my identity don’t always back me up.

My family really needs me to work so our children and the adults can get all their needs met. We are struggling financially, and not too long ago I was bringing home a good paycheck.

These days, I feel like I can’t work. I am working at getting through the days and taking care of my kids, making major changes to my health, and keeping myself emotionally stable.

The fact that I am functioning by getting out of bed and going out into the world, and actively taking care of my kids everyday is a miracle that didn’t exist 4 months ago.

Yet, there is increasing pressure from my spouse, myself, and our mounting debt to get myself back to work in my old job so I can bring home that money again.

At the same time, I still find myself getting overwhelmed by little things from my old life that were easy then.

Today, my major accomplishments were to make myself breakfast, pick up my son from camp, take him to a park for an hour, and check Facebook a few times. Those few things literally took up my whole day and felt like all I could do.

I hear inside my head “you are so weak. Quit complaining and stop being lazy and get back to work.”

I never considered myself a lazy person, but maybe I am. Maybe the overwhelm I constantly feel is just an excuse to get out of work.

I like giving my family money so we can live a good life. I just don’t know if I can put myself back into that position of doing what I do to make good money.

I am good at this work when all parts of me are working together, and anxiety doesn’t hang close by. Sometimes I miss it, so sometimes I secretly dip my toe in the water and feel overwhelmed like I can’t do it. Then I feel completely inadequate.

Who am I? Am I this smart, talented, strong woman who is a good provider for her family, or am I this pathetic, damaged, weak woman who gets overwhelmed when a door slams too loud?

I don’t know. It seems like this is my fate to be on a polar opposite pendulum depending on the moment.

One moment I am feeling healthy and strong with the health changes I am making in my life, the next I am falling down my stairs again and re-injuring myself, and feeling depressed about the state of my health and the hopelessness of not getting help or answers from the medical community.

I was thinking earlier today maybe the medical community is just writing me off because I am 50. I feel like I am 30 in spirit, so it is confusing to be thought of as old.

My life is frustrating and good. I am smart, but cognitively impaired sometimes. I am strong, but easily hurt. I feel really healthy, then chronic pain consumes me again. I am super stable, and then utterly disabled by the chaos in my brain.

The only thing I know for sure is that I am usually a really good mom.

Other than that, who am I?

The unloved child

Lately, I have been discussing in therapy the fact that I grew up in a loveless home.

My therapist wants me to grieve that my parents didn’t love me.

I haven’t been able to do it as my immediate response is that I feel nothing toward them.

I do not feel love to, or from them, or even want to be loved by them. I feel nothing.

Empty. That’s what I feel the most when I think of them.

My mother was drunk as an alcoholic all through her pregnancy with me. My dad on more than one occasion laughed saying “I don’t know why you don’t have fetal alcohol syndrome given as much as your mother drank.” He always followed it with, of course, they didn’t know about fetal alcohol syndrome back then to make an excuse for her.

When I was born, my mother didn’t let up on her drinking. Both of my parents were alcoholics, and living in a middle class fantasy world. It seems almost every adult that came to our house was an alcoholic, which was weird statistically.

Our minister wasn’t an alcoholic, but I can remember him at the house sometimes to clean up some type of domestic mess.

Like the Catholic Church, our minister served to keep this chaos, violence, and abuse hidden behind closed doors.

Neither of my parents were affectionate with me in a way to communicate they loved or even cared for me.

In fact, it took my mom 50 years to utter the words she loved me. By then, it fell on deaf ears.

My father, who was nicer to me than my mom, never told me he loved me his entire life. I wanted to believe he loved me because he was kinder to me once he stopped drinking. But, as I sat with him for months on his deathbed, I heard him tell others he loved them, but never me, the only one who was loyal enough to see him through his death.

Growing up without love is a hard thing to work with as an adult. The only loving behavior I received was when I was being sexually abused. Otherwise, I was invisible in my world.

I once had an African-American maid who worked for my family in the late 1960s and early 1970s. Her name was Annie, and she had a son who went to school with me named Tommy (he ways my friend until he was taken away from me). Annie tried to look out for me and my brothers. She would try to make sure we had food and other things that children should have. Though she was strict, she was kind to me, and gave me a few moments of stability.

As embarrassed as I am that we had a maid, I am grateful God put her in my life for a brief reprieve of some of the horror that was happening to me. I was so sad when she was gone.

It turns out you can grow up without love, and not always turn into something horrible. But the price of that admission is to walk around feeling empty, not getting too close to people, and not needing anyone outside of myself.

Interestingly, the main place I feel strong love is with my children. I love them with every ounce of my being, and I know they love me. I don’t know how I learned how to love them like this since I never saw this in person. I am grateful that somehow I have this inside of me when it comes to them.

I don’t feel lonely, which is strange for someone who doesn’t get too close to people. I think I am so used to living on my own, and in my head that it is comfortable this way. When I am alone, I don’t have to worry about someone hurting me.

I don’t know how to get close to the grief my therapist thinks I need to experience to heal. I suppose my intuition believes my world will come to an end if I touch on this type of grief. Maybe I am better off staying numb to it.

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.