What If I Lose My Care?

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

A Letter to Myself Five Years Ago

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self

Autism Diagnosis and Rediagnosis: Do Labels Matter?

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

Treatment Plan

While in the mental hospital, every six weeks, or later, every six months, I’d have a treatment plan meeting. Not that my treatment or its goals changed anything over the 9 1/2 years that I remained in the hospital; my treatment goal was always to find me a suitable place to live and my treatment involved, well, what, actually? I honestly can’t tell you even now that it’s been over four years since I’ve been out.

What did change, were my diagnoses; from autism and an adjustment disorder (which explained my acute crisis that had led to my admission), to autism and impulse control disorder, to autism, dissociative identity disorder and PTSD, to eventually no autism at all and just borderline and dependent personality disorder and a little bit of depression (not otherwise specified) thrown in (just because with just personality disorders on my file I would have had to be discharged right away). The nurses said the psychologist who’d added depression, did me a favor that way. I think they were just completely clueless as to what they were doing with a complicated case like mine.


This post was written for the Six Sentence Story Link-Up, for which the prompt word this week is “Treatment”. I am not sure I did it right this time. I hope I did.

My Worst Fear

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

Disagree

Today’s prompt for Five Minute Friday (#FMF) is “disagree”. Initially, I was going to write a post about how (lack of) open disagreement with others was used against me. When my then psychologist diagnosed me with dependent personality disorder in 2016, she thought that my lack of open disagreement with many of her controversial opinions, proved I had this condition. It honestly to me proved that she was in authority even though she had no clue what she was doing.

I eventually deleted that draft and started over, but I still want to write along those lines.

In Christianity, we are often taught to not just respect, but obey authority. Children are expected to obey their parents in everything. Wives are expected to submit to their husbands.

As a survivor of childhood trauma as well as many abuses of power, I struggle with these commands.

That being said, the command to be obedient as a child and submissive as a wife, does come with its respective obligations on the part of the parents and husband. In Colossians 3:21, Paul writes for example: “Fathers, do not embitter your children, or they will become discouraged.” In other words, the Bible is not a reason for harsh treatment and abuses of power. Besides, of course the Bible does not say anything about people in modern-day, informal authority positions, such as the aforementioned psychologist.

Now, five years on, I am very happy that I eventually did stick up for myself and sought an independent second opinion on that diagnosis. Then I applied for long-term care. Now that I have the right people (loving, respectful people) around me, I no longer need to fear authority. I can respectfully disagree with people, whether Biblically I’m supposed to submit to them or not. I am still working on feeling confident in my role as a grown-up woman. God and His Word help me on this journey.

Okay, this post took me much longer than five minutes to write, as I had to look up what the Bible actually said and also because I got distracted several times. I hope that’s okay.

If I Have a Good Day…: Ramblings on Fear of Joy

Today is a slightly better day than yesterday. I actually managed to make a soap for a staff and also go on walks. I even reached my daily step goal! In addition, I have been exploring my faith.

Still, fear of joy is haunting me. Until a few years ago, I never knew it was a thing. That is, I had read about it on a fellow trauma survivor’s website. That was many years ago already, but I never quite understood what it meant. I never realized I experience it. And yet I do.

I think this fear is intertwined with my core belief that, if people truly knew me, they’d abandon me. It is the exact opposite, in a way, and yet it’s similar too. I mean, if people abandon me regardless, why bother trying my best?

Deep down, I feel that people are going to abandon me if they find out how wicked I am. I also, conversely, feel that people are going to abandon me if they think I can cope fine on my own. And these different views are not mutually exclusive. After all, my psychologist at the mental hospital thought I was bad and manipulative, and yet she also thought I would cope fine on my own.

My belief that people don’t see the real me, the wicked, attention-seeking, manipulative me, makes me want to disappear. It makes me feel ashamed of my needs. But it also causes intense anger, because at the core maybe I want to prove myself right.

On the other hand, my belief that people don’t see my genuine need and think I can cope fine on my own, leads to actual care-seeking behavior. It’s not the same as attention-seeking, but maybe in my current context of a care facility, it’s worse.

I have a sense that both of these beliefs cause me to fear joy. On Sunday, I felt abandoned by the staff. Then on Monday, I was trying to “prove” that I’m more needy and hence more wicked than my staff believe. Today though, I’m feeling slightly better, but this scares me. It scares me because I’m convinced I’ll be expected to cope on my own if I’m managing.

Maybe that psychologist was right after all that I have dependency issues. I worry the staff will agree at some point and this in fact reinforces care-seeking behaviors. Which, of course, is counterproductive.

A Time I Decided to Speak Up for Myself

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

Adult Separation Anxiety

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

I Am My Top Priority?

Today I decided to buy The Goddess Journaling Workbook by Beatrix Minevera Linden. This book of journaling prompts focuses on the Greek goddesses to explore yourself and keep a manifestation mindset all through the year. The first goddess to be explored is Persephone. She was led into the Underworld by Hades and ate a pomegranate there. This fruit was the fruit of the dead, so Hades could really keep her in the Underworld forever. Eventually, Hades and Persephone’s mother Demeter reached an agreement to keep Persephone in the Underworld half the year and in the upper realm the rest of the year.

Persephone’s story is used as a metaphor for our darker side and our mistakes that follow us throughout life (like Persephone’s eating the pomegranate did). The first prompt in Persephone’s chapter is titled “You are your top priority”. It asks us when we didn’t put ourself first.

Well, my first thought is: am I really supposed to be my own top priority? My husband often says he values me more than himself. I tend to reply that I value him more than myself too. Whenever I doubt that I value him more than myself, I feel guilty. But really, I currently choose myself over my husband whether that’s supposed to be so or not.

It wasn’t always this way. Until I made the decision to try to go into supported housing on September 20, 2018, I always put others first. Not just my husband, but literally almost everyone seemed more important than me.

I was diagnosed with dependent personality disorder in 2016. Though the diagnosis was made for all the wrong reasons, there is some truth to it. I remember my psychologist used my lack of resistance to her opinions against me and she was right. Until I decided to ask for a second opinion in November of that year, I never openly fought her list of ongoing misdiagnoses and mistreatments. It’s interesting that, later, she said I am very assertive but maintained that I have DPD nonetheless.

What also comes to mind, is that as a child and even as a teen, I always did what others wanted and put them before myself. I remember at one point using the Persephone myth to describe how I felt about my relationship to my classmates in high school. (Remember, I went to grammar school, so the classics were taught a lot.)

Still, I was thought of as self-centered or selfish even by my parents. This is probably because, in a materialistic way, I did put myself first. I was often jealous when my sister got gifts. Indeed, she did get more than I did, but I got more attention, albeit most negative.

Now I do generally put myyself first. I decided to go into long-term care despite no doubt disappointing my husband a bit. I mean, of course I struggled greatly living semi-independently, but it wasn’t like I was dying. Or maybe sometimes it was, because I did take two overdoses that could’ve killed me. Then again, wasn’t I selfish for doing this?

Linking up with Life This Week.