Diagnosed with Dissociative Identity Disorder – Our life before & after.

We are the Stronghold system and we are diagnosed with Dissociative Identity Disorder. This is one of the hardest articles that we’ve written. It’s personal, emotional, authentic and vulnerable. It’s our adult life story and how psychology broke it with a label they refuse to serve with evidence based treatment or specialized therapy.

TW for suic*de attempts, hospitalization, non graphic.

Timeline:

2001 First job, ice cream parlor.
2004 Escape network.
2005 Body turns legal age.
2006 Engaged.
2007 Married.
2007 Education visit orphanage Mozambique.
2008 Indonesia school garbage dump movement.
2009 Indonesia project handover.
2009 Our child was born.
2010 Dissociative Identity Disorder?
2011 Dissociative Identity Disorder.
2012 Dissociative Identity Disorder!
2012 End of our work career, declared unfit for work.
2012 Divorce.
2012 First time inpatient.
2013 OSDD cause not enough time loss anymore..
2014 No crisis help.
2014 Ten years since we escaped the network.
2015 Again no crisis help.
2016 Therapy as pretended singleton for DID, no crisis help.
2017 Start Power to the Plurals.
2017 Cancer diagnosis.
2017 No crisis help.
2018 Still no crisis help.
2018 Cancer free after 3 surgeries.
2019 No crisis help.
2019 Fifteen years since we escaped.
2020 Start of The Plural Association nonprofit!

Before we got diagnosed:

Please know this timeline is in no way complete and reduced for our own safety and some people in pictures are blurred for their privacy. After we escaped we didn’t feel safe here in the Netherlands. So our plan was to get as far away from here, as soon as possible. But first we met someone we would marry. Together we traveled all over the world. A few locations can be found in the timeline, but not all.

First we traveled to learn. We went to Canada quite often, so much so, that they forbid me to come back for a year saying I must be there for business. We visited many European countries as well. Then, we went to Mozambique. Here we had the honor to work alongside an amazing hero. We worked and learned in their orphanage for thousands of the poorest children in the world. And a refugee for many special needs women. 

After that we joined a 6 month trip to Indonesia. Here we connected with local people and started a food project and a school on a garbage dump, that is also people’s homes. We learned so much here. We handed over the school and food project to local people and came back a year later to find the project stronger than ever. It’s still going to this day. 

Pregnancy and diagnosed with postnatal depression:

We got pregnant and altho our body was fine the first 15 weeks or so, during one of our Canadian trips we got very sick. This stayed for the remaining of our pregnancy. We got pregnancy diabetes and our so longed natural labor was rushed into a 50 hour long birth at the hospital instead. The baby was healthy. We not so much. 

Postnatal depression, that was it. The birth was traumatic for us. The doctor had said so herself. But it didn’t go away. Instead, we went away. We dissociated so much. All day, every day. Work became impossible, even though we always have had successful jobs. We were unable to maintain them. We got scared to bathe our son alone. Even though we know he has always been safe in our care. We had no clue what was going on, or how to make it stop. In 2010 one of us told a therapist that our bodies name was unable to go to therapy and had asked her to go instead.

Diagnosed with Dissociative Identity Disorder:

This is when DID first came on the table. Funny enough we told them it happened because I was dissociating. It would pass soon when the post natal depression would pass as well. In 2011 a different therapist noticed a big change in our behavior and asked us for our name, date of birth and what time of year it was. We answered with the wrong answers. Again DID was on the table. We denied and walked out. But someone else walked back. And told the therapist the same thing happened to her a year before. 

We asked if maybe we should see a specialist. The therapist referred us and eventually went with us to a psychiatric evaluation. The divorce our husband had requested got finalized around the same stressful time of our life. The psychiatrist asked us if we thought we had DID. This was in 2012, when it was just allowed by the DM-5 to self report signs and symptoms. Although we didn’t know that back then.

There were 12 people who got diagnosed:

Twelve different people decided to answer that question from a personal standpoint. The psych wrote it all down. The psychologist in training could not think of questions and was stunned. Most of us had no idea the others also had spoken. It was one of the most confusing appointments of our life. But the psychologist, psychiatrist and the women in training were all convinced, Dissociative Identity Disorder. 

We found a letter explaining this had been going on for a few years now and if we could please stop going into denial as it was hurting people inside. 12 people, that’s what the psychiatrist counted. That was already 2 more than what was deemed normal in our past perspective. So although we accepted the DID and the 12 people, everyone after that was fake. Sometimes we felt the whole DID was fake and we were just making it up.

Diagnosed but no help:

We had a diagnosis but no therapist. No help. No understanding. We found out that the waiting list for therapy was 4 years. After yet another suicide attempt we decided we had to do something because we would not survive another 4 years like this. We went in a crisis center for one night. 

Soon after we started our self study into dissociative disorders, early childhood trauma, the brain, the mind, conscious and unconscious. We started our hypnosis training around this time as well. Miraculously we could go to the therapy center for DID a lot sooner. The therapist we got assigned didn’t share with us that she had never worked with people with DID before. She told us if we didn’t get control over the switching we wouldn’t see our child grow up. Our host disappeared, we have never seen her back.

Going inpatient after getting diagnosed:

The therapist advised to go inpatient at their facility. Of the 15 or so patients only 3 had DID, myself included. Most of them had eating disorders and trauma. We were very confused. We thought it was specialized for DID, but it was certainly not. We had to try to do childish activities but were not allowed to switch. Eventually I had to save a girl’s life while staff refused to come over and told us to just call an ambulance and not long after we went home. 

We decided this was not the place where we were gonna get better. It only showed us what we did not want. It showed us our worst fear. Those doctors clearly thought we belonged in that place. We would not see our son grow up anyway, because we could not control switches. We asked his safe grandparents to care for him. Hoping to protect him from ourselves. He would never have to save my life and wait for an ambulance, like we had to do for that girl inpatient. Since then we have not been able to find help. 

One therapist refused to call us by name, told us to postpone a surgery to remove cancer, told us we would make our diagnosed DID chronic, told us we would end up in a facility, known for treating people with intense mental illness, told us to go back to the network if that’s what we ‘’wanted’’ and ignored research and the isstd guidelines we showed her. Even Dutch works like structural dissociation theory says to name parts, if two or more insist. The workbook says to never let it become a power struggle.

Lastly we didn’t want to go anymore. Sarah was dormant, just as she is now. So Amee went. When Sarah came back, the therapist told us it could not continue like this. We asked what she meant. She explained that she had been seeing a child part in her office every week and therapy is for adults. Amee is an adult. A protector. The therapist was so single-minded that she rather made wrongful assumptions then to ask what was going on. 

Giving up, well not really:

That was the last therapist we saw. We tried. We have had multiple intakes for trauma therapy since. One tried to refer us to a war center. The last one told us the combination of trauma and DID would make it extremely hard to find therapy. Most just say they do not know how to treat DID and do not have funding for education.

In 2017 we started Power to the Plurals. 5 years after accepting our diagnosis and starting our self study. We know some people have been privileged and lucky enough to find a Plural friendly, affordable therapist with enough available time. We have not been that lucky.

So, may our life before this diagnosis speak of the magnitude of our capabilities.
May it serve as a testimony of our abilities.
May it remind the universe and the world of our possibilities and the promises we made.
Psychology, you are not ready for us. But we are done with you ignoring us.
You had 25 years, change will come!

Here is an older video by one the ”orginal’s” in our system who shares about part of the experience of getting diagnosed and how she remembers it all: