For all you Alice in Wonderland fans, I’m sure you recognize this. The White Rabbit running around with his pocket watch, hurriedly exclaiming, “I’m late, I’m late, I’m very, very late!”. The whole I planned and God laughed theme just kept right on, right onning, this week.
So here’s the week in review week 2. Or more accurately, the week in review part 2.5 because, well, I’m late.
The Foundation
The good
The biggest news: The site has finally migrated to WordPress. Of course I would’ve built this site directly in WordPress if I hadn’t listened to the “authority”. I initially built it via the hosting company’s web builder instead. Which ended up costing me over a week of wasted time. Plus I ended up deleting all my work and starting from scratch. Learning to trust my gut instead of the “authority” is most definitely a process I’m still not good at. I’m certain it’ll come up again and again.
But hence week in review 2.5, instead of 2 as planned.
Second biggest news: had the first meeting with my supervisory board/board of directors and got so much awesome input! I’ll be changing some things around, but most definitely for the better. Stay tuned, because I’ll be introducing them soon. Their know-how and different points of view make me feel confident that the Foundation will be a roaring success. Or at least a flaming success. Or … well see, that’s definitely my cPTSD talking.
Last but not least I’ve been in contact with a lot of people who want to contribute to the Foundation. In ways I had not expected for at least another 3-5 years. So though the week itself has been riddled with “I’m late” in this aspect I’m YEARS ahead. Maybe this should be post “Week in Review -172” or something?
The bad
Some of the contacts I’m trying to make are incredibly difficult. No responses to e-mails, or promised answers “mañan” (tomorow), that well, definitely didn’t come the day after. So back to the Aruban way of doing business. Seeing if anybody might know somebody who might know something who may or may not contact me whenever. Frustrating, but just part of life here.
But yes, most definitely part of the “I’m late” theme of this week.
Other than that? Content wise I added more info on mental illness in general. It’s a precursor to types of mental illnesses and specific mental illnesses. I’ll be adding a lot about trauma in the process, so plenty to keep me busy. Besides beginning a list of resources available in Aruba, I’ve also started the blogs & books sections. I’m about 4 years behind on my reading, so expect lots more soon. (Soooo late, guess it cancels out the -172 and now we’re back to 2.5?)
Me and my cPTSD
On the personal front, it’s been all about my journey to finding fitting treatment. And well, I’m torn. For those of you who know a little about my struggles to get :
a) a fitting diagnosis
b) a fitting treatment plan not to mention
c) actual treatment…
Well….
So far I still have none of the above.
The online intake was a relief. Speaking to two mental health care professionals who I didn’t have to explain things to in repeated details was like a ray of sunshine after years of winter. Their questions were great. And I managed talk without the “that can’t be/isn’t true” interruptions I’ve often experienced with mental health care professionals here.
Uh, oh, here it comes
Then came exactly what I had expected. “So…you realize we don’t actually treat cPTSD here, right? We have a lot of patients with cPTSD as comorbidity, but we treat personality disorders. And the report that we’ve gotten states that the assessor suspects you have a personality disorder. She can’t pinpoint one exactly, so we really need to talk about it.”
I half laughed and cried. The short version: About 5 years ago I met my current psychiatrist and he, from day one, said that there was no fitting treatment for me here in Aruba. That I’d need a written diagnosis to request treatment abroad, but that he knew of no-one who had managed it.
It took me 3 years and 2 months to get a written diagnosis which I knew was wrong. The assessor in that case had told me that her specialism was personality disorders. Plus she really only offered schema therapy as a treatment option. cPTSD was kind of outside of her realm. I was supposed to be allowed to review the psychological assessment report before it was finalized, and give feedback. That particular psychologist left suddenly, so there never was a review. She was therapist number 3 of 4 that left suddenly in the past 5 years, so not unexpected.
But I wasn’t going to wait another 3 years to get it fixed, hence the report that we were discussing during the online intake.
The ugly
“Stubborn and demanding,” was the reason the assessor had decided I probably had a personality disorder. I was most definitely stubborn and demanding at the time of the assessment. I hadn’t been seen nor heard when it came to a written diagnosis for 3 years. Let stand been offered a treatment plan nor treatment. To add insult to injury, this therapist promised the assessment would really take place in our first session. Then didn’t deliver on that promise until I became stubborn and demanding. That was about 6 months later.
The best part is, if I get stubborn and demanding in my job or to protect others, it’s considered “being assertive, and standing up for what’s right”. Then people praise me for having “good” personality traits. When I stand up for myself, it’s a personality disorder. [insert shrug emoji here]
The two therapists looked at each other. Did I think I had any personality schisms that might be considered a basis for a disorder? Well, I definitely have trust issues. I’m great at knowing where my boundaries are, but terrible at protecting those boundaries effectively. Does that count?
So…I’ll get a second intake in a few weeks, where hopefully we can decide what to do next. But they did suggest that IF we decided they were a good option for me, we would start with a thorough psychological assessment. So yay!
What would fitting treatment look like to me?
I’d actually been talking to a friend about what I’d consider “fitting treatment” a few months prior. And I tried to explain as best I could. A lot of previous therapists wanted to start things like EMDR or exposure therapy immediately. Or would make me move out of a place I felt safe, because “that was the proper next step.” Those things somehow always made my symptoms way worse. Honestly in some instances it opened wounds which had barely scabbed over.
Only once did that lead to something good: finding out about cPTSD. The flip side – complete and utter agoraphobia.
Terrible analogy time
I tried to explain it to my friend as follows.
I have an illness that’s been caused by acute, chronic and covert trauma. It’s like I have broken legs, broken feet, broken arms and wrists. If I’d go to a hospital they’d take scans and decide which bones would need what to heal. Some might do fine with a cast, others might have to be reset or operated on.
Then I’d be given time to heal from those injuries. In the meantime I’d get physical therapy. This to make sure the rest of my body wasn’t too affected by being laid up.
After THAT I’d start putting weight on the broken bones slowly, most likely with crutches or other support. Then, once we were sure they could carry the weight, the casts and the screws would be removed. But still I’d use crutches or something till fully healed.
As you can tell I have no idea how medicine actually works, but she got my drift.
So far I feel like I constantly get told my bones aren’t really broken. That I have to start walking NOW.
The I’m late, but this is 25 years late
A few days later I was sent this link (in Dutch). It underwrote what I have been saying for almost 25 years. “EMDR works great for single acute trauma, but is less effective in treating developmental trauma. It may even worsen symptoms.” And “with the various therapies that I tried it seemed to worsen the symptoms of my cPTSD.” There’s much more that I recognize so strongly, but, [insert strong language], I have been told for years and years that I was wrong. That there was something wrong with me. Which there is. But apparently not that.
As you can imagine I was gobsmacked. For the past 5 years, the sporadic therapists I was assigned insisted they knew better. They were following the standard protocols. Which had been developed over years and years by the best specialists in the world. One even refused to continue treatment because I refused to follow his advice. Why was I stubborn? I knew following his advice would have most definitely worsened my symptoms.
Pfffff. So now what? I honestly don’t know. For now I’ll try and wait for the online intake. I’ll study up about IFS in combination with protecting the “self”. But…I’m afraid it might be too little, too late.
