Lessons Learned from Regret #Write31Days

Posted on by Astrid

Welcome to day three in my #Write31Days challenge on personal growth. Today, I picked a writing prompt from The Self-Exploration Journal, which is a 90-day challenge. The prompt is about something you regret. What did this experience teach you in the end?

I am choosing my decision to move from the city of Nijmegen psychiatric resocialization unit to a long-term care unit in Wolfheze, a town near Arnhem in 2013.

The rationale for this decision was totally understandable. My husband lived in Doorwerth, a town neighboring on Wolfheze. Since we were exploring the possibility of me moving out of the mental institution and in with him, it seemed just about logical that I’d move to Wolfheze.

What I hadn’t anticipated was that I’d encounter less than supportive staff in Wolfheze. When I went for an intake interview, the responsible psychologist wanted to place me in a sociotherapeutic house, whch meant you’d live practically independently with a few other clients but the staff would come to your house at set times. They reasoned this would be the best preparation for independent living. I don’t think they’re wrong about that, but it became more and more apparent that I couldn’t cope with independent living like this.

So I opted to go into the long-term unit with 24-hour care instead. Even this was a huge adjustment, as staff started expecting me to learn practical independence skills that were too overwhelming.

My new psychologist also pretty soon removed my diagnosis of dissociative identity disorder and PTSD, changing it to borderline personality disorder. From there, it went further downhill. My first psychologist was good enough. She eventually did realize that I’d need lots of long-term support even when going into independent living.

In 2014, I got a new psychologist. This wasn’t my decision, but the old one was leaving. This psychologist had the worst impact on me of all mental health professionals I’ve had in those 9 1/2 years in an institution. She decided right from the start that I’m not autistic. She started to tell me I have acquired brain injury and need to go into a training home to learn independence skills for that. Now let me tell you, i already went into a training home that caters to among other people, those who are blind and those with acquired brain injury. I am confident that this training home offered me the best possible independence training. Yet because it failed, I had failed and I had to try all over again. Since I didn’twant that, I was dependent and misusing care and needed to be kicked out of the institution.

I was eventually kicked out of the institution in 2017. I only later learned that it wasn’t about me, but about the huge budgets cuts to mental health. Of course, the Nijmegen institution would have to face budget cuts too, so I might’ve gone the same route had I stayed in Nijmegen. However, then at least I’d have had supportive staff.

What I learned from this whole thing is that supportive people are the most important. You can live in a better home or a better area, but if the people who support you through and through aren’t there, it’s not going to work.

Five Years

Posted on by Astrid

Today marks five years since our DID diagnosis got removed and changed to BPD. I’m not sure how to feel about it. I mean, that diagnosis was most likely incorrect but so is the BPD (which later got downgraded to BPD traits, which I do think we have but then again who doesn’t?). I mean, we rarely if ever experience amnesia and don’t go around disclosing ourselves when it’s not safe, but we do clearly exist as multiple identities.

Besides, the therapist who diagnosed us with DID at least took us more seriously than any before or after her (except for maybe our current psychiatrist, whom we just came out to three weeks ago). She didn’t allow us to be out with the nursing staff, which was okay’ish with us, but she did allow all of us to talk to her and didn’t try to fit us in a therapeutic box. The therapist who changed our diagnosis to BPD did, mislabeling Jane as a “punitive parent” and telling her to go away.

We at one point insisted on getting formal testing for DID. The therapist administered the SCID-D (a structured interview for diagnosing dissociation) to us but never finished the report. I wish she had even if it showed we’re fake. I mean, we have a right to information, don’t we? She also never responded to our E-mail, once our diagnosis was changed, asking her whether she’d ever suspected BPD in us.

I feel really odd now. I don’t know where we’re headed with regards to our mental health treatment. It’s all so scary. What if we’re really all imaginary? Since it’s unlikely we’ll ever be diagnosed with a dissociative disorder or get related trauma treatment again, will we ever learn to not exist?

A while back, someone asked in an FB group what happens to those misdiagnosed with DID after they get de-diagnosed. Whether their parts vanish. I don’t know really what I hope happens to us. I mean, we’ve tried to hide for a long time after our diagnosis got changed, but it was unsuccessful. We’ve tried to identify with the natural/endogenic multiple community before, since we felt not having a diagnosis meant we shouldn’t intrude upon the DID community. That was unsuccessful too. Does the fact that we can’t hide successfully for a long time mean we’re real after all, or does it mean I’m just terribly stubborn? I initially wrote “we” instead of “I”, but of course if we’re fake, we are not we anymore and never have been.

Last Week at Current Day Activities

Posted on by Astrid

Today is a good day so far. I’m slightly less energetic and motivated than I was over the week-end, but I wouldn’t say I’m depressed either. It feels a little strange having started my last week at my curren day activities. Next week, I start at a new place, thankfully with the same care organization.

I started at my current day activities over a year ago fresh out of the mental institution. I didn’t know it back then, but the manager had gotten the impression that it was just an emergency placement, so I wouldn’t be there long-term. It’s a place for people with intellectual disabilities, which I don’t have. As such, I assume part of the reason I was eventually asked to find another place, is that they need my spot for someone who does have an intellectual disability. The staff don’t say so of course. They say it’s better for me to find another place. I hope that my new place will
prove to be better indeed.

The new place is also for people with intellectual disabilities. They are mostly severely intellectually disabled people at the gorup I will be attending, but they are at least partly capable of their own personal care. On the group I go to now, the clients are all profoundly intellectually disabled and need considerable help with their personal care. Two of my fellow clients need one-on-one support a lot of the time.

Why, you may ask, did I end up in this group? Well, I am not intellectually disabled, but the care approach to developmental disabilities suits me much better than the one for mental illness. I started day activities last year at a group for relatively capable people with mild intellectual disabilities. They do industrial activities there. This definitely wasn’t my type of activity. Also, the constant chatter that I couldn’t make sense of, was overloading me. So I often retreated into the sensory room. I prefer sensory activities to industrial-type work anyway. The center psychologist was consulted because my behavior was getting out of hand at the industrial group and she recommended I be transferred to the sensory group, which is the one I attend now.

There, I did well for about six months. Then, my behavior spiraled out of control again when several new clients joined my group and as a result there were lots of changes. After an incident in which I self-harmed, the manager decided I’d need to leave this place. Thankfully, he gave me time to find another place. The new place is with the same care organization but in a different town.

At the new place, the other clients are slightly more independent than at my current place. Also, the staff are more used to dealing with challenging behavior. It is pretty crowded and noisy, but when I’m overloaded, I’m allowed to retreat into the sensory room. I spent a few days at the new place to see if I’d like it and I did. As such, they’re more prepared than my old place. After all, the staff there only got a bit of information about me from my institution psychologist, most of which I reckon was incorrect. After all, said psychologist felt I’m dependent rather than autistic and as a result exaggerate my sensory issues in order to elicit care. Well, I’m not.