Some Might Say: Judgments About Me #Blogtober20

Okay, I said I wasn’t going to take part in the #Blogtober20 prompts anymore, but this one did speak to me. Today’s prompt is “Some Might Say”. People can be incredibly judgmental. Today, I will write about some things people have said about me that indicate they are clueless or insensitive or both.

The first things people notice about me, are my blindness and the fact that I’m relatively well-spoken. This often leads people to assume that I either should be able to be independent or that I am obviously not because I’m blind.

My parents and other people who are relatively educated about blindness, often assume that I should be able to live independently and be employed. Even if they are fine with my “choice” of not pursuing a career, their idea of me is to live independently. Some people who don’t know me that well, ask whether my husband and I have or want kids. To me, it’s obvious that we don’t, but then again that may be internalized ableism. After all, I for one am not able to take care of kids, and besides I value my freedom. Others with my disabilities may definitely be able and willing to parent.

Another judgment I often get is that my marriage isn’t strong because we don’t live together. My last psychologist at the mental hospital even dared to say my marriage isn’t worth anything if I don’t intend on living with my husband. Well, when we got married in 2011, we had zero intention of living together. I was on the waiting list for a permanent workhome for autistic people. It is only because that didn’t work out, that my husband asked me whether I wanted to live with him. And just so you know, our reason for getting married is that we love each other and want to show each other that this is for life. And in my opinion, that’s the essence of marriage. Okay, I know that at least a third of marriages end in divorce, but I hope that if couples get married, they at least hope this is going to be for life.

Like I said, some people, particularly strangers who are clueless about disabilities, think that it’s perfectly understandable that as a blind person I live in a care facility. This misconception often feels as uncomfortable to me as the idea that I am or should be independent. I used to want to educate people that most people who are just blind, can live independently. I no longer do this though. Not only is it none of random strangers’ business that I’m not just blind, and isn’t it my obligation to educate, but I might also be adding to the stigma I fought so hard against as a teen.

By this I mean the National Federation of the Blind’s philosophy that blindness shouldn’t hold you back. It in fact used to say that the average blind person is just as capable as the average sighted person. That led to the idea that, unless you had severe or multiple other disabilities, you were to be pushed to achieve whether you could or wanted to or not. That just doesn’t work for me and it doesn’t work for many blind people.

#Blogtober20

Book Review: Full Disclosure by Camryn Garrett

Last week, I was drawn to Anne of In Residence’s Black Lives Matter booklist. I am white and admittedly completely clueless about racism, certainly as it applies to Black people. I however immediately decided to download a few books off this list onto my phone. The first book I got to read, obviously, was one with a medical aspect to it, because that’s what I’m most interested in: Full Disclosure by Camryn Garrett.

Summary

In a community that isn’t always understanding, an HIV-positive teen must navigate fear, disclosure, and radical self-acceptance when she falls in love–and lust–for the first time. Powerful and uplifting, Full Disclosure will speak to fans of Angie Thomas and Nicola Yoon.

Simone Garcia-Hampton is starting over at a new school, and this time things will be different. She’s making real friends, making a name for herself as student director of Rent, and making a play for Miles, the guy who makes her melt every time he walks into a room. The last thing she wants is for word to get out that she’s HIV-positive, because last time . . . well, last time things got ugly.

Keeping her viral load under control is easy, but keeping her diagnosis under wraps is not so simple. As Simone and Miles start going out for real–shy kisses escalating into much more–she feels an uneasiness that goes beyond butterflies. She knows she has to tell him that she’s positive, especially if sex is a possibility, but she’s terrified of how he’ll react! And then she finds an anonymous note in her locker: I know you have HIV. You have until Thanksgiving to stop hanging out with Miles. Or everyone else will know too.

Simone’s first instinct is to protect her secret at all costs, but as she gains a deeper understanding of the prejudice and fear in her community, she begins to wonder if the only way to rise above is to face the haters head-on…

My Review

When I bought this book off Apple Books, I had next to no idea what this book was about other than the main character being Black and HIV-positive. Having an excuse to read a medical novel under the guise of supporting Black lives felt good though (yes, I know that makes me pretty oppressive). I had no idea this book was so good though.

Not only does it talk about HIV in much more depth than I ever was aware of. I mean, I almost immediately felt the shame come back to me from when we were presented with a problem case in college in which a fictional workplace was disrupted by stigma surrounding one worker’s HIV-positive status and I pretty quickly jumped to conclusions by saying the coworkers might want to be tested. My instructor immediately called me out that you don’t get HIV from drinking out of the same cups as someone who’s positive. I mean, I knew this much, but still objected that fear might guide the coworkers to get tested anyway and I’d understand that. How horrible!

It was totally liberating learning about not just HIV, but sex and sexuality in a broad perspective too. Several characters are openly queer. I loved learning about diversity like this.

Then there’s the race aspect. I didn’t learn too much about that from this book, as it assumes you already know a bit about Black culture, but I bet Black people can relate to some of the things being discussed.

The book is more plot-driven than character-driven, but I happen to love that. The characters are still really well-portrayed.

Overall, I totally loved this book and as such gave it five stars on Goodreads.

Book Details

Title: Full Disclosure
Author: Camryn Garrett
Publisher: Penguin
Publication Date: October 29, 2019

MamaMummyMum

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.

Emotion Regulation Issues: Dealing with BPD Traits #AtoZChallenge

Welcome to day five in the #AtoZChallenge. When thinking of a topic for the letter E post, I was thinking of how popular yesterday’s post on depression had been and how it had helped destigmatize mental health. I thought of doing today’s post on another mental health topic. Emotion regulation disorder is the term sometimes used here in the Netherlands to describe a condition that’s still formally called borderline personality disorder. As BPD is neither borderline (bordering on what?) nor a personality disorder (in that there is very effective treatment for it), I think this is appropriate. Besides, emotion regulation disorder is a lot less stigmatizing of a word.

My husband asked me, after hearing what my first four posts had been about, whether I’d be making my letter E post about something positive. I said “No”, as mental illness isn’t generally seen as a positive thing. Indeed, I’m still feeling pretty depressed and this may be why I chose this topic. However, the stigma associated with mental illness can still be worse than the illness itself. If I can help remove a bit of that with this post, I’m happy.

I was diagnosed with borderline personality disorder in 2013. I didn’t like it. This diagnosis replaced two other conditions I’m pretty sure I do have as well, namely dissociative identity disorder (DID) and PTSD. I was told that BPD is a trauma-based condition too and that dissociation really runs on a spectrum from BPD to DID. This is true, but I still wasn’t happy about the diagnosis. I had a lot of internalized stigma about it. This wasn’t helped by my therapist, who pretty much assumed my BPD was causing me to make up the DID. Well, I’m not making it up.

My husband didn’t believe I could possibly have BPD. After all, borderlines are known for unstable relationships and he had been my first boyfriend. Then again, there are nine different criteria to BPD and one only has to meet five of them to qualify for a diagnosis. Symptoms I most definitely do have include an unstable self-image, dissociation and stress-related paranoia, fear of abandonment and self-harming and suicidal tendencies. I can also have bad anger issues and react impulsively. In fact, the only criterion I’m pretty sure of I don’t meet, is the one about unstable relationships. People who do meet this criterion, often engage in what is called “splitting” within the BPD community. They alternate heavily between idealizing and devaluing their favorite person (who can be a partner, but can also be a family member or even a therapist).

In 2016, my diagnosis was downgraded from full-fledged BPD to just BPD traits. I’m pretty sure I’d still meet the full criteria, though not as strongly as before maybe. It is common for BPD symptoms to lessen as a sufferer gets older.

I prefer to refer to my BPD traits as emotion regulation issues, like I said. Not only does this sound less stigmatizing, but it feels more true to what I experience. I do experience, after all, very strong emotional outbursts. These can be of anger, but more recently also sadness or fear. I also find it hard to distinguish emotions and tend to express every strong emotion as anger.

Like I said, BPD, unlike other personality disorders, is treatable. The most evidence-based treatment is dialectical behavior therapy (DBT). DBT combines cognitive behavioral strategies with mindfulness. I tried it last year, but was finding it hard to pay attention in therapy and carry over what I learned from the manual into real life. I do however still try to apply the skills.

Dropping the Mask: Does It Take a Diagnosis? #TakeTheMaskOff

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I use this blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

Mental Illness Labels

Yesterday, Sue over at My Loud Bipolar Whispers wrote a very interesting post on mental illness labels. It is definitely very inspiring to read how Sue overcomes the stigma and self-stigma of mental illness labels. I must admit I’m still caught up in mental illness labels at times. I started this blog in part to help myself overcome this limiting mindset where a diagnosis defines me. As such, I thought I’d do a similar post to Sue’s.

Over the past nearly twelve years that I’ve been in the mental health system, I have accumulated a bunch of mental illness labels. I am too lazy o list them all, but they included adjustment disorder, impulse control disorder NOS, dissociative identity disorder, PTSD, borderine and dependent personality disorder and depression. These labels define me in a sense, but in a sense, they do not. After all, some of these diagnoses were not just given to me but taken away again later. As such, I’m not supposed to dissociate anymore, as DID is no longer among my mental illness labels. Well, here we are, all 25 or so of us. I hear my former psychologist saying that I make up the DID because of having read up on it too much. Ironically, she was the one most eager to give me new and exciting mental health diagnoses.

Mental illness labels have a function in getting insurance to pay for treatment. In addition, they may guide what treatment and support you can access. Self-labeling (self-diagnosis) may have the added benefit that you can access support without the approval of a mental health professional. That’s how I access support geared towards people with DID.

However, mental illness labels should not be limiting my experience of who I am. I am more than my mental illnesses. Here is a list of labels I’d like to be known for.


  • Wife

  • Daughter

  • Sister

  • Friend

  • Writer

  • Blogger

  • Creative

  • Introvert

  • Compassionate

  • Intelligent

  • Honest

  • Former psychology major

  • Disability rights activist

  • Mental health advocate

  • Survivor

What labels do you define yourself by?