4 Years and 9 months for an online intake for possible fitting treatment

I have cPTSD (complex post traumatic stress disorder). I have probably suffered from it since pre-school. Though I was treated in my mid twenties for PTSD in the Netherlands (e.g. my acute traumatic experiences), I was not diagnosed with cPTSD till 2019. It’s taken 4 years and 9 months to get to an online intake for possible fitting treatment abroad.

I realized I was heading toward a complete breakdown halfway through 2018. I informed my employer, and asked to come up with solutions in order to prevent said break down. My boss suggested I quit. I protected myself and called in sick (a.o.) instead.

It took a while to get through the red tape, and the ‘crisis’ psychologists I went to while I was waiting to be assigned a therapist via Respaldo, Aruba’s Mental Health Foundation, were a hit and a miss. But I got lucky and was assigned to a psychologist who specialized in trauma. Our sessions were good though heavy, and I started making progress. As part of my therapy I was taking dance classes again. Dance has been a lifesaver to me at various times in my life (more details in other posts).

The next step was resuming social activities, like social dance evenings. The first few times were horrendous. I was convinced I would never recover an iota of who I felt I had been.

On the 7th of December 2018 there was another social night. I went. And at one point that evening it was there;  for about 3 minutes my body felt like my own again. I was completely in the moment; was able to push down my hypervigilance and my anxiety level to ‘reasonable’ proportions.

When I got home I cried and cried. I was so happy I’d felt like myself again, no matter how briefly. So grateful that my psychologist had insisted I keep trying. So looking forward to repeating that experience until I could find my way back to me.

The following Monday I was fired because my boss had seen me dancing despite being incapacitated (a.o.). I did win that court case (more on that some other time), but honestly, I have not had that feeling back since. The stress of that situation broke me down further than when I had initially asked for help.

My psychologist offered to start EMDR (Eye Movement Desensitization and Reprocessing). I took that opportunity. During our first session I was asked to remember a time or place when or where I felt safe. I could not remember. At all. I went further and further back in my memories.

I was crying my eyes out while simultaneously feeling completely numb.

This realization caused my specialist to really question me about certain things. That led to a cPTSD diagnosis, which would be formally put in a report at a later date. I was told there was no fitting treatment available in Aruba.

It led to the start of my crippling anxiety and panic attacks.

I could not get out of the house. I stopped going to appointments and going out. I wanted to shut down, and shut everything out. I felt suicidal.

By the time I resumed contact with my psychiatrist in August of 2019 I was beat. I had no faith left that I would or could recover.

It took me till September 2019 before I was able to ask for help again. In October 2019 I finally got an appointment, and the following day started anti-anxiety meds. The trauma specialist had left Respaldo by this time. The promised written diagnosis never materialized.

The next psychologist informed me that exposure therapy was the way to go, and that treatment for cPTSD was not available in Aruba, nor would it be any time soon. Moving abroad would be my only option to possibly receive fitting treatment.

Considering residential mobility was already an untreated covert trauma of mine, I opted to try a different path: treatment abroad (medische uitzending) through Aruba’s insurance provider, UO AZV Aruba. I was told in no uncertain terms that was impossible.

I asked for a break from exposure therapy. It was supposed to last 3 weeks. 4 Months later we had an appointment. He suggested I try another therapist as he did not agree with me that the exposure therapy and his insistence on me moving out of my current house, preferably abroad, would just compound my covert trauma.

I started the process anyway.

First I needed a written diagnosis. A long period of waiting for another psychologist to become available followed. I was on a waiting list for another trauma specialist; she ended up with reduced contact hours and thus became unavailable. The third was specialized in personality disorders and wanted to start treatment (for what was a mystery to me) instead of providing a diagnosis.

By this time I was frustrated and angry. After three years of attempting to get anything done I had lost all patience. I knew what I had. I had been reading dissertations and medical journals by this time because I REALLY wanted to be sure about my diagnosis.

I had never in my life found anything that I recognized so strongly.

Instead of working towards a diagnosis or dealing with the underlying covert traumas the latest psychologist wanted to discuss our relationship and my lack of confidence in specialists. I agreed to begin a round of ‘angry child’ sessions on the following conditions. 

First we’d start with diagnosis sessions in which I’d answer questionnaires and my history would be inventoried. Then begin angry child sessions as she wrote her initial report, which I would receive to review and revise at a later date. More angry child sessions to round off that particular chapter, while she’d revise the report, and lastly, finally … a written diagnosis.

Things did not go according to plan.

I got the draft diagnosis around September 2021 – though much of the report was erroneous. We never got around to the review, as the therapist was relocating back to the Netherlands. We never got around to finishing ‘angry child’.

By this time I didn’t even care anymore. I had something on paper. My psychiatrist agreed to send in a request for treatment abroad. He did this on the 25th of October 2021.

Then more waiting. No answers to queries. My file was at the legal department, but other than that it was conspicuously silent. Once the term for the AZV to answer had passed (which I knew to heed due to previous work experience), I asked Respaldo to send in a fictitious appeal (fictief bezwaarschrift) under the administrative laws that govern Aruba (LAR). Respaldo replied that their legal department would not do that.

Luckily I’d written a few in the past, so despite everything, gathered my wits and wrote one myself. Sent it in to the Minister of Health as head of the AZV on the 27th of February 2022, sent a copy to the commission that is tasked with evaluating these appeals, the “bezwaaradviescommissie LAR”. Then… more silence.

On February 3rd 2022, my psychiatrist got the request to fill in a form so that my case could be discussed. On the 22nd of April I was informed by my psychiatrist that a second opinion had been requested, which would not involve me talking to the organization tasked with the second opinion at all. On August 22nd 2022 I got the message that the second opinion was received.

On October 10th 2022, my psychiatrist informed me our request for treatment abroad had been approved.

By this time I had been assigned another psychologist – who came up with another diagnosis. We did have one EMDR session before she informed me she didn’t feel qualified enough to continue. She didn’t really see much purpose in alternative paths, since I would be going abroad anyway. She ended up leaving Respaldo suddenly as well.

My (lack of contact) with the insurance company tasked to arrange my treatment abroad is also another story worth a separate post.

This Friday, March 17th 2023, I will finally have an appointment for my online intake with the treatment center in Holland.

June 2018 till September 2021 to get a mostly erroneous diagnosis report. 3 Years and 2 months.

October 2021 till October 2022 to get approval for treatment abroad. 1 Year.

October 2022 till March 2023 to get an online intake appointment with the proposed treatment center. 5 months.

June 2018 till now. 4 Years and 9 months. Just to get to an online intake for possible treatment.