Working On Us Prompt: Stigma

For the fourth time, Rebecca of Beckie’s Mental Mess hosted the Working On Us prompt last Wednesday. I didn’t get to participate before and I really wasn’t sure I could make it this week. After all, I couldn’t load the post at first and then it was my birthday yesterday, so I was occupied all day.

The topic of this week’s prompt is stigma. I forgot the exact wording of the questions, but I’m just going to use the opportunity to ramble.

In 2013, I was diagnosed with borderline personality disorder. This is, as many sufferers will know, a highly stigmatized diagnosis. Borderlines are thought of as manipulative, unfaithful, volatile, generally awful.

It wasn’t like I wanted this diagnosis. I didn’t feel I fit the criteria. I mean, I had at the time been in a relationship for over five years and it wouldn’t cross my mind to cheat. I wasn’t particularly attention-seeking either. I didn’t go around manipulating my therapist into offering me more and more support and threatening to kill myself if she didn’t.

Yet these are stereotypes. I do have a really unstable sense of self. I do have a lot of rapidly shifting emotions. I do fear abandonment. I do self-harm. I do dissociate and suffer with stress-related paranoia.

I must add here that my diagnosis of BPD replaced DID and PTSD, which generally get a lot more sympathy. The reason my diagnosis got changed, is that my therapist went along with a DID peer support group leader’s opinion that I had imagined my dissociative symptoms.

Years later, my BPD diagnosis got downgraded to BPD traits, but I got an additional diagnosis of dependent personality disorder. DPD is characterized by an inability to stick up for oneself, passiveness and clinginess. I don’t think I meet the criteria at all. The reason I got labeled with DPD is because I thought I neeeded long-term supported housing and my psychologist thought I didn’t. She told my mother-in-law upon my discharge from the mental hospital that I can stick up for myself really well. She said that the DSM diagnosis that comes closest when a patient suffers institutionalization, is DPD. Well, there is a difference between a dependent dynamic and a dependent person.

The same goes for all personality disorders: they describe patients, not dynamics. A person with a personality disorder may be more likely to engage in a certain dynamic, but the disorder isn’t the same as that dynamic. This is the reason narcissistic abuse really isn’t a thing. Yes, people with NPD are more likely to be abusers than those without NPD, but abuse is a dynamic, whereas NPD is something affecting the patient. Let me tell you here that I’m in Facebook groups for narcissistic abuse survivors, but only because they’re the only groups that acknowledge the specific psychological damage dysfunctional families can cause.

I fought the BPD and DPD diagnoses, because I didn’t feel I met the criteria. However, this does allow the stigma to continue. Of course, I do have BPD traits. That doesn’t make me a monster. And of course I was a pain in the ass of my last psychologist. That doesn’t mean I have DPD.

Was I Sometimes Raised as a Golden Child?

I have been feeling really off lately. I keep having flashbacks. I also keep having what I’d describe as flashforwards, where I imagine my parents’ reaction to the different possible outcomes of the long-term care situation. These then lead to more flashbacks. One particular flashback I keep having is to a phone conversation I had with my mother when I’d just been admitted to the mental hospital in 2007, or maybe it was shortly before then. She yelled at me “You can’t even wipe your butt without your support worker there”. While this was and still is exaggerated, I do have issues with my personal hygiene, including sometimes with toileting.

I have noticed that there’s a lot of shame attached to my needs. Like, there is this constant nagging voice in my mind saying that I really do manipulate everyone into giving me more care. After all, am I not getting by? This part of me is telling me to erase everyone from my life and just go live on my own, since even if I lived with my husband and no support, there was still my husband to be manipulated.

I was discussing all this with my nurse practitioner last Thursday. He said even if I do manipulate people (and I no doubt do, as does everyone else), these people also let themselves be manipulated. Like, if they have an attitude like they’d rather help me with every little thing than endure my frustration, it’s no wonder I become dependent.

There was this show on Dutch television last Sunday about a second grade class. I didn’t see it, but a term used in it that was repeated often throughout the week, was “curling mother”. I have no idea whether that’s the correct English term, but it refers to a parent who helps their child with everything until they’re eighteen and then magically expects them to have learned independence and leave the nest. My nurse practitioner was reminded of this when I described my parents. It feels odd, because even though yes my parents did help me with every little thing, this expectation that I move out at eighteen was made very explicit from an early age on. It wasn’t like my parents were hoovering over me not realizing that they’d not be there for me forever. In fact, I’m pretty sure they couldn’t wait for me to move out. It just ugh, feels so off. Like I was spoiled somehow because my parents did everything for me.

At this point, I remember a discussion in an inner child healing group in which the original poster commented on some author or speaker saying that the golden child of narcissistic parents suffers a lot. This person was confused, because the golden child is the child favorited by the narcissistic parent, the child who doesn’t get abused (or so it seems). Some people said that the golden child suffers a lot because, well, they are only the narcissist’s favorite as long as they live up to their perfect standards.

I was raised in a household where the golden child/scapegoat roles reversed repeatedly. For those not aware, the scapegoat is the main target of obvious abuse in a narcissistic family. As such, I can relate to a lot of golden child attributes. Like, I was often praised excessively, bragged about and let off the hook. Then again, I was, and this was always very clear, expected to livve up to my parents’ perfect-image plan for me. Once I stopped doing this, I was placed in a clearer scapegoat role.

It still feels off to think of myself as having been spoiled. I know Pete Walker says spoiling is a severe kind of trauma too. However, in society, it is often treated like the spoiled child is to blame for being spoiled. And they definitely aren’t. Only as adults can they choose to undo the effects of this trauma, but they have to admit it first. I have to accept this.

Developing My Fighting Spirit

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.

The Greatest Life Lesson #Write31Days

Welcome to day eleven in #Write31Days. Today, I picked a prompt from 100 Self-Help Journal Prompts by Francie Brunswick. It asks us about the greatest lesson we’ve learned in life and what makes this lesson so important.

Here I’m going to be a bit repetitive, as I covered this topic already in my letter to my younger self. The greatest lesson I’ve learend in life is that you need to stay true to yourself.

I have some codependent tendencies. In other words, I tend to be a people-pleaser. For years, I thought that to make up for the burden that I was due to my blindness and other disabilities, I’d need to let other people make everyday decisions for me. In that sense, at age seventeen or eighteen, I definitely would’ve met the criteria for dependent personality disorder. Not because I wanted others to do stuff for me or because I claimed support I didn’t really need, but rather because I allowed others to take responsibility for my life. Conversely though, practically, I thought I had to be extremely independent, never asking for help, for fear of losing other people’s approval.

Until my mental crisis of 2007, I let my parents rule my life. That may be normal’ish for someone at that age, but it wasn’t healthy. Then when I went into the mental hospital, I let my social worker make decisions for me. She was a very authoritarian person, threatening me with forced discharge from the hospital or guardianship if I didn’t do as she wanted.

Then, of course, I let my psyhcologist on the long-term care unit make decisions for me. Ironically, when she diagnosed me with dependent personality disorder in 2016, she used as one of the reasons the fact that I wouldn’t openly disagree with her. I told her half-jokingly that I assumed she’d remove my diangosis again if I fought her hard enough on it. She wouldn’t. Her diagnosing me as dependent was based on her screwed beliefs about disability and mental health.

I am now 32. I have the most supportive care team I could wish for. However, if I ever get to deal with less supportive staff in my life again, I know I can and must stick up for myself. I cherish Leonie, my fights-like-a-lioness insider, who emerged when I most needed her, when fighting my psychologist on the DPD diagnosis. I have a right to be myself. I am not dependent on anyone for making my decisions.

Where Do I Belong? #Write31Days

One of the questions in The Self-Exploration Journal is simple, yet not so simple to answer. It is: “Where do you belong?” For today’s #Write31Days post, I am going to attemtp to answer this question.

I am a restless person. Even though I crave stability, I keep fleeing from wherever I am. I can never seem to find a place where I feel I belong.

I must say though, it probably has to do with control. I have a pretty horribly external locus of control. This means that I have a feeling that others or circumstances control my life, rather than life being a bunch of choices I make. This isn’t necessarily healthy, but in y case, it is somewhat realistic.

I grew up with parents who had my life planned out for me. I knew by the time I was nine that I’d leave the house at eighteen to go to university. It scared the crap out of me. Lately, I’ve been feeling an insider who holds these memories.

I left the house at nineteen to go into independence traing. That wasn’t what my parents wanted, but I for the first time in my life showed some major rebellion. Even then, I needed my parents’ albeit reluctant approval to actually take the step.

I continued to consistently seek approval from others for my major decisions. This may’ve been a major reason I got moved into independent living after the training home despite the fact that the staff and I agreed this wasn’t the best possible placement for me. The staff after all, had promised my parents they’d prepare me for independence.

I landed in a mental hospital three months into independent living. By this time, I’d lost every bit of self-determination I had. I didn’t know what I wanted and just let the psychiatrist admit me to the hospital.

I regained a small amount of self-determination over the years of my hospital stay, only to have it all destroyed by my last psychologist. She said I was being dependent, not for letting others make choices for me or for needing their approval, but for demanding care she felt I didn’t need.

Now I’m living with my husband. I don’t feel safe here. Not relationally – my husband is lovely. I mean that I lack the support I feel I need.

So I often flee this place too. I don’t feel like I belong. But will this ever change? Will I ever find the peace of mind to live a stable life without needing to constantly be on the run?

Maybe if I get into long-term care, I will. After all, then I’ll hopefully finally feel safe without the pressure of needing to be re-assessed for care at least every year. Then I can have goals that I can take years to maybe meet or maybe not. Maybe then I will find a place where I belong.

Struggle #WotW

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence