Joy and the Fear It Induces #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again late writing my post in the #AtoZChallenge. Today is another hard day. Last week when talking to my support coordinator, I realized one of the problems might be the fact that I think I don’t deserve to be happy. This is not necessarily all there is to my trauma-related symptoms and, besides, is it still paranoia if they are actually out to get you?

I’ve mentioned the fear of joy before. It has been following me forever, since learning that I was losing the little sight I had at around age seven. I always prepared for the day when I’d go totally blind. That day still technically hasn’t come, although I can hardly call the tiny bit of light perception I do have sight.

Then there is Jolanda Venema. Dutch people who are in their fifties or older will no doubt remember her photo in a newspaper in 1988. She was chained to a bed, stripped naked, in an institution for people with intellectual disability. I learned a few years ago that it was actually the institution I live in now. I am not old enough to have actually seen the original newspaper article, but I did learn about a similar case in a child and adolescent psychiatric unit in Utrecht in around 1997. This particular girl, a 16-year-old at the time whose name I forgot, was even more like me than Jolanda, in that she had a borderline normal IQ. Cases like these have always haunted me, but that got worse when I entered the care system in 2005 and more so when I was admitted to the psychiatric hospital in 2007. At the time, staff literally told me that, when I needed more support than the three nurses to sixteen acutely ill patients (if they weren’t understaffed) could provide, I’d be locked up in seclusion. And I was. And coerced into taking high doses of medication to prevent me being secluded tons of times after that.

I know for a fact that I’m not allowed to be truly happy. The adage in care is, after all, that it’s better to provide okay’ish care to two people than excellent care to one. And I would’ve agreed if care ever had been excellent. But it never was in the 20+ years I’ve been in the system and not in the 20+ years before that. At least not for people like me and Jolanda.

This doesn’t mean I never experience moments of joy and I do try to acknowledge them. I’m not purposefully being more negative in order to elicit better care. If anything, the opposite is true. However, as another incident this evening proved, most people don’t nearly try their hardest and they don’t think others do either. Well guess what? I do! That doesn’t mean joyful moments don’t induce fear, but fear is not a choice. Besides, like I said, is it still paranoia if they are actually out to get you? I don’t think so.

Autonomy: Learning That I Can Do Things and That My Opinions Matter #AtoZChallenge

Posted on by Astrid

Hi everyone. Today is April 1 so this means the #AtoZChallenge is starting. I haven’t prepared any posts in advance, but since I am going to write on healing past hurts, the concept of autonomy spoke to me for my letter A post. Autonomy is the ability to be self-reliant and independent, both physically and emotionally. It starts to develop in toddlerhood.

As I learned about emotional development as it relates to developmental disability (I discussed this in 2023), I realized in many ways I’m not there yet. I struggle with even basic decisions like what clothes I want to wear.

When I was 30, I was told I have dependent personality disorder. This disorder is characterized by passivity and the inability to make decisions independently, as well as a pervasive need to be taken care of. It is often related to lack of encouragement of autonomy in childhood.

I don’t have many memories of my early childhood, but I do know I wasn’t given a lot of autonomy when I was older. It’s not that my parents didn’t try, but as soon as I got frustrated, they gave up. They genuinely believed they were giving me autonomy and that I was just too stubborn to want to be independent. For this reason, they claimed and to this day still claim it’s my choice to be in the care system.

My psychologist back in 2016, the one who diagnosed me with dependent personality disorder, sided with them. She said I did have the assertiveness to stand up for myself, but wasn’t doing things I was (thought to be) capable of. That’s not what dependent personality disorder is though: lack of confidence in one’s own physical capabilities is but one criterion out of eight. And please note: it’s specified that the reason someone isn’t doing something, is in fact lack of confidence, not lack of skill or motivation. In other words, unwillingness to do things independently that you can do, is not dependent personality disorder, but care misuse.

And for clarity’s sake: I am not and never was misusing care. However, that’s exactly what my psychologist thought I was and according to which presumption she treated me by kicking me out of the mental hospital with virtually no support. She once again didn’t encourage me to develop autonomy. Refusing to help someone who clearly asks for help, contrary to the current idea in mental health services, may be politically useful, but it is not autonomy-supportive.

I am only now, now that I’m nearly forty, learning that I in fact was conditioned by both my parents and the psychiatric hospital to disregard my own opinions. Yes, being able to do things independently, is one aspect of autonomy, but so is the ability to make your own choices. One can hardly exist without the other.

Share Your World (January 12, 2026)

Posted on by Astrid

Hi everyone. I’m joining Share Your World again. Loved this week’s questions. Here goes.

1. How would you describe your laughter? (giggly, deep, infectious? etc)
I think when I truly laugh out loud, my laughter is pretty deep especially for someone assigned female at birth. I don’t really like it, but I prefer it to my non-laughing voice. My voice is quite low for a woman’s, which I don’t mind, but it has some weird screechy feel to it. Eek!

2. What makes you smile?
Lots of things can make me smile, but I am told I especially have a wide smile on my face when recounting fun activities I’ve engaged in recently.

3. Have you ever cried with laughter, and if so, can you remember the circumstances?
Not that I remember.

4. Have you ever laughed at an inopportune moment?
Absolutely. I am an extremely detail-oriented thinker and this means I sometimes laugh at a detail that’s funny even though the bigger picture is rather sad. An example I’ve mentioned quite a few times is the moment a fellow patient in the psych hospital told us that he had been diagnosed with incurable cancer. He for whatever reason needed to name a staff member, but couldn’t remember her name so instead said “fat troll”, referring back to a moment he’d insulted this staff himself. I immediately burst out laughing.

Gratitude

For today’s optional gratitude section, I decided to look into BrainyQuote, an app and website with quotes on it, for a quotation on humor or laughter. I found numerous. Here’s but one of them.

"Comedy is simply a funny way of being serious." - Peter Ustinov

Indeed, this quote shows that the line between satire and reality is often blurry. I in this light remember a story on a satirical Dutch “news” site about riots because an aggressive wolf had been shot. Two weeks later, it actually happened.

Do I Have a Mental Illness?

Posted on by Astrid

Hi everyone. Several happenings today, including my reading today’s Friday Faithfuls post, made me think about the question whether I have a mental illness. Or should I say mental health condition? Is there even a difference?

People who know me, may be surprised at the fact that I even ask this question. I mean, of course! I spent nearly a decade in a psychiatric hospital. Then again, when I was first admitted, the psychiatrist deciding to admit me made it very clear that she wasn’t diagnosing me with a serious mental illness. I had a diagnosis of autism, of course, which though it is in the DSM and though here in the Netherlands it falls within the realm of psychiatry, isn’t technically speaking a mental illness. To be added to this diagnosis was adjustment disorder, which in short means an inability to cope with the stressors of daily life. Nowadays, people with this diagnosis alone don’t qualify for mental health services, let alone admission to a psychiatric hospital.

But once I was in the system, numerous mental health diagnoses which may fall under the realm of mental illness, were added. My first was impulse control disorder not otherwise specified, which I’m pretty sure was just a way of explaining away my meltdowns without admitting they were due to less than adequate care. I often wondered why they singled out impulse control as the only issue on which they gave me the vague “not otherwise specified” diagnosis. I guess it’s because, unlike my anxiety, depression, disordered eating, etc., my meltdowns did bother other people.

Then, several years later, came (complex) PTSD and dissociative identity disorder. These are mental illnesses, but they are caused by overwhelming circumstances, just like adjustment disorder.

Later came borderline and eventually dependent personality disorder. Finally, I was diagnosed with recurring depression in 2017.

All this to say, whether I have a mental illness or not, isn’t as straightforward as it may seem. I do know that my current care plan lists “mental health problems” as a general “diagnosis”. I honestly try not to care about the specifics of my diagnosis, but I’ve learned the hard way that the specifics can be used against me. For example, when I had the personality disorder diagnoses, I was kicked out of the psych hospital with almost no aftercare because of allegedly misusing care. I wish the higher-ups would look beyond the labels and at the individual.

Laughing Over Lemons

Posted on by Astrid

Laughing over lemons. That phrase has been on my mind for a few days. It’s a twist on the phrase “When life hands you lemons, make lemonade.” I think sometimes it’s best to laugh at our worst days.

Like, when I had only been in the psychiatric hospital for a day back in 2007, I was telling psych ward jokes. You know, what’s the difference between the patients and the staff on psychiatric units? First, the patients get better and leave. Second, the staff have the keys. And there was another one. Something about not all patients believing they’re God. I think those last two apply to institutions for people with developmental disabilities too. I mean, particularly at the intensive support home (ie. the home for those with severe challenging behavior), my spouse said the only noticeable difference between the residents and staff was the staff carrying a pager to beep for assistance when a resident becomes violent. Other than that, both staff and residents were usually staring blankly at the TV.

We, the residents, were often blamed. Or at least, the other residents (other than me, that is) were. They have no motivation for life and they are too old to teach. Besides, no-one can force them away from the TV because that would be involuntary care. That’s what I was told. Never mind that I’ve witnessed on many occasions staff telling residents that they had gotten enough “attention” for the day because staff had been sitting with them for fifteen minutes with a cup of coffee.

I am often quite cynical in my humor. If only my cynical jokes weren’t actually 99% truthful. And now all I can hope for is that my joke about everything being okay in 2034 (because the world is going to be blasst to hell) isn’t going to turn out 99% truthful too.

I am linking this post up with Friday Writings. It isn’t necessarily a hopeful or positive post. However, I do feel that laughing over the many lemons life hands me and many other people in this world and age, can certainly be helpful.

#WeekendCoffeeShare (August 15, 2025)

Posted on by Astrid

Hi everyone on this warm Friday evening. I’m joining #WeekendCoffeeShare. I usually do mine on Saturday, but I’m motivated to write now so let’s make use of it. I just had my evening soft drink and a single-serving bag of chips. I’d recommend you’d grab something to drink if you were here. Let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been hot all week. In fact, I’m pretty sure we have a local heatwave, meaning five days in a row of daytime temps above 25°C, of which three with daytime temps of 30°C or above. I haven’t checked the news in months and don’t want to check it now, but I don’t think it’s a national heatwave.

If we were having coffee, then I’d share that, thanks to the nice weather, I was able to eat outside three or four times this past week. Did I share my spouse gifted me a new outside table, because I’d broken the one I’d gotten last year? My spouse had ordered it online and had had it delivered to the institution. We hadn’t seen each other since, so yesterday after a lot of pestering, I decided to snap a picture. I rarely take pictures fully independently, so if this one’s unclear, I apologize.

If we were having coffee, then I’d tell you I’m still going strong with my movement and exercise goals on my Apple Watch. On Saturday, I did in fact break my active calorie record. Yesterday, I broke a record with the longest bike ride. My Apple Watch also said I burned the most calories during a cycling workout, but I doubt that’s true.

If we were having coffee, next I’d announce my participation in the Walk on Sunshine on October 4. It’s a walk to raise money for the Dutch cerebral palsy charity CPNederland. The goal is to walk at sunrise. Sunrise is at 7:45AM that day and the staff usually don’t get here until 7:30, but one of the staff agreed to come here early and do the walk with me. I signed up for the 5km walk, because that’s a challenge for me particularly in the morning, but not impossible.

If we were having coffee, lastly I’d tell you all that I’m still struggling. I experience a ton of trust issues towards my staff and am not sure these are entirely unfounded. Like, today my spouse and I were on the phone during my entire late afternoon activity and, though it was nice to talk to my spouse, I worried that the staff are going to cut my care hours because of it. After all, for some time they tried to make my spouse visit me each Sunday so that they could cut my hours.

Honestly, I think I’d be much more independent if I knew that, when I have a bad day or a bad moment, I can always get some extra support. In this sense, my psychologist back in the mental hospital was right that anxiety is part of the reason for my dependence. However, her subsequent actions to “treat” me, ie. kicking me out of the hospital into independent living with minimal support, actually worsened my situation. So did my staff’s decision back last year about my having to compensate for every moment I needed extra support due to distress. These and other strategies, while intended to encourage self-reliance, actually achieved the very opposite. After all, my abilities fluctuate and my mental state doesn’t adhere to a day schedule, so that I’m only in distress when I have one-on-one. No, I don’t purposefully work myself up in order to get more support, but my mistrust of my staff’s continued actual support does lead to distress.

…Not Life Experience Deductible

Posted on by Astrid

Hi all. As I shared before, my birthday is next week. I’ll be 39. This means that next week will mark the start of my 40th year on this planet. It isn’t necessarily something I take too seriously, except that my best friend, who is “only” 36, loves to remind me that I’m the older one of us. Then again, life starts at 40, right?

We were joking about age again this afternoon when my best friend came up with a new mantra for me. I’d have to explain here that, for years when I was in the psych hospital, I had a profile signature at the forum my best friend and I know each other from (and at many other autism and mental health forums). It was: “Time spent in psychiatric institutions is not life experience deductible.” With this mantra, I meant to counter the professionals who told me that proper help and treatment, a long-time place to reside, etc. could wait because I was still young. Yes, seriously.

Now the mantra my friend came up with was: “The first 40 years aren’t life experience deductible.” This is actually the polar opposite of “Life starts at 40”.

While I believe that, indeed, the first (nearly) 40 years of my life matter as much as however long I have left here on Earth, I do believe that it’s never too late to create a brighter future. And that doesn’t have to include huge leaps forward. It can include small sparks of joy. In this sense, nothing I go through or accomplish each day is life experience deductible. Yes, it’s incredibly frustrating that things in the care system progress at such a slow pace, but that doesn’t disqualify the meaning of everyday pleasures.

Written for Fandango’s One Word Challenge for today, which is “mantra”. I love doing these little freewrites.

Like a Rolling Stone… #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday is “favorite place”. I am not a fan of traveling, so I have absolutely no idea what my favorite place to go on vacation would be. I did go on a postponed honeymoon in 2012 to the Swiss town of Zug and it was beautiful. That is, walking through the mountains was quite an experience. The town itself was full of top-notch expensive cars.

We haven’t been on vacation since 2014 and, though my best friend and I (my best friend currently still being my spouse, for those who don’t know) have discussed vacation plans, neither of us is keen on going anywhere, honestly.

I would probably be considered a homebody. Except, what is my home? My staff often refer to the care home as “home” when talking to me, but it still feels off. And though I have no plans of traveling to any exotic locations anytime soon (or ever, considering most truly exotic locations are not easy to get to for someone who hates flying), I wouldn’t consider my room in the care home to be anything close to a favorite place. Or maybe it’s my least hated place out of all. After all, I’ve never truly felt home anywhere. Not with my parents, not in independent living or with my spouse nor in any of the places in the care system I’ve resided in.

I guess I’m like a rolling stone. After all, I’ve never truly connected to any particular place. This feels sad.

School Reunions

Posted on by Astrid

Hi everyone. One of this week’s Writer’s Workshop prompts is to write a post based on the word reunion. This reminded me of two reunions, one I actually attended and one I didn’t.

The reunion I did attend was for the school for the blind I had been a student at for my last three years of elementary school in the late 1990s. The reunion took place in 2008 and it was on school grounds. The reason the reunion was held, was the fact that many buildings would be reconstructed in the next couple of years, so as to give former students and staff one last chance to see school grounds in the form they’d remembered them.

The school included buildings for both elementary and secondary school, as well as homes for the residential students and a place for leisure activities where the non-residential students had lunch too. I was a non-residential student and only attended elementary school, like I said.

There were two reasons why I wanted to attend the reunion. One was to meet former fellow students and staff. That was a success. I met my best friend from school, with whom I hadn’t been in contact since leaving this school in 1998. I also briefly talked to my fourth grade teacher. That was awkward, as I didn’t feel comfortable disclosing to him that I resided in a psychiatric hospital at the time.

The other reason I wanted to attend the reunion, was to see the school in the form I remembered. That, unfortunately, wasn’t a success, because part of the elementary school, including the classrooms, had been destroyed in a fire in 2006. Part of the building was still standing, but it was no longer useable.

I was on grounds a few more times attending smartphone use training in 2017. On May 24, I believe, there’s going to be another reunion for this school, but it isn’t on grounds and I know no-one who will be attending, so I won’t either.

This brings me to my other reunion story. IN 2013, my high school celebrated 100 years of existence. I for a while considered attending, but was still in the psych hospital at the time and besides, my entire high school experience had been quite bad. So I didn’t go.

A few years later, I got an E-mail from a former teacher there. She had been my Dutch teacher and tutor for the first year and part of the second year of my attending this school, until she went on sick leave and finally found another job. She had been at the reunion and had wondered about me. Having read part of my website, she now understood why I hadn’t been at the reunion.

This, as it turned out, would also have been my last chance of meeting the teacher who’d become my tutor after the Dutch teacher left. He got cancer about a year after I’d graduated high school in 2005 and died in 2016. I am pretty sure it was for the better that he didn’t know that I was still in the psych hospital then.

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

Hi everyone on this last Saturday of March. I’m joining #WeekendCoffeeShare today. It’s nearly 8PM as I write this, so no more coffee for me. However, a fellow client’s parents brought us cheese, sausage and maybe other little snacks to go with our soft drinks this evening. I’ll have apple and peach-flavored Dubbelfrisss as usual. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been mild most days with daytime temperatures around 15°C, though night-time temps have been around freezing. We had a little rain on Sunday I believe, but I think that was before I woke up. Honestly, I’m pretty sure nature could use some showers.

If we were having coffee, then I’d talk about my physical fitness routine. I am still going strong with my goal of a perfect month on my Apple Watch and, on Thursday, got in over 20K steps again.

If we were having coffee, then however I’d moan about my tremors. I’ve mentioned a couple of times that my right leg trembles horribly sometimes and, usually when it’s been happening, the rest of my body follows suit and starts twitching. Yesterday, it was really bad. My intellectual disability physician usually says it’s most likely influenced by stress, though both of us know that my medication (particularly my antipsychotic) could be causing it too.

With respect to my meds, I’ve often been reacting out of fear of becoming unmanageable and for this reason asking for a very slow taper. My physician has been constantly asking whether my life will become more difficult soon due to for instance more temp workers, because apparently that’d be a reason not to taper further for a while. Now I’ve decided that being manageable is not a reason to put my body through the effects of strong meds. Besides, yesterday I had an aggressive meltdown precisely because I couldn’t cope with the tremors anymore. Now thankfully on Monday my staff will contact the intellectual disability physician, my GP or both.

If we were having coffee, I’d also moan about my shoes. I’d worn one pair of orthopedic shoes for only a week last Thursday and they were already badly damaged. The physical therapist took a look at them and said she thought the orthopedic shoemaker might not have done the last repair properly. I’m not sure that’s the reason they get damaged so quickly. On Friday though, the physical therapist came by and took a video of my walking, which she is going to compare to a video she took about half a year ago. I’ll see her again next Friday and hope she’ll have some ideas.

If we were having coffee, I’d share that I’ve been having bad memories of my time in the mental hospital. Like I said above, the intellectual disability physician here constantly talks about the possibility of more temp workers as an excuse not to taper my medication. This was precisely why I was prescribed medication in the first place: I’d become severely irritable because of the large number of temp workers at the time and my psychologist was threatening me with seclusion if I continued to have meltdowns. Similarly, when on the locked ward, I was literally told I’d be locked up in the “quiet room” if I needed more care than they could provide. I realize rationally that this is institutional abuse, but I’ve internalized a lot of all the bullcrap institutions feed me.

If we were having coffee, I’d end on a somewhat positive note by sharing that the behavior specialist finally filled out the forms to get the Center for Consultation and Expertise involved on my case.