Developing My Fighting Spirit

Posted on by Astrid

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.

What’s Holding Me Back to Write from the Heart?

Posted on by Astrid

I have not written much over the past few days. It isn’t because I didn’t want to. In fact, I’ve been wanting to write a lot, but couldn’t find the right venue. I mean, if I want to write for this blog, the content has to be “blog-worthy”. Not because that was my original intent with this blog, but because I’ve become (too) focused on my audience.

“Blog-worthy”, in this respect, means being at least 300 words long, being well-constructed and not being too personal. I mean, yes, I write a lot of very personal posts by soe more general bloggers’ standards, but I still wish I could express myself more freely.

In particular, I wish I felt okay for all of the alters to write using their own names. I originally intended this blog specifically for that purpose, but I feel like I might attract negative feedback if I do this. I mean, dissociation is not your everyday mental illness.

That then has me gotten looking for private journaling apps on the iPhone and PC. I spent most of this afternoon downloading, trying and then deleting at least a dozen apps. None meet my needs. Honestly, what I’m really looking for is something that looks like WordPress but is completely private. Yes, I know I could create a protected blog, but that still feels “kind-of-public” to me.

Then again, is it truly the fear of exposing my thoughts to the public that holds me back? Or is it my inner critic holding me back regardless? I mean, I noticed an alter – a newly-emergent one -, trying to write to an E-mail list a few days ago, but she kept saying that she cannot be her.

Of course, an E-mail list still has an audience, but this was a DID list, so all members are supportive of alters posting. And yet, I feel weird. What it all boils down to, I think, is that I want people to know my thoughts, but I want people to be supportive even more. Then again, how can I elicit support if I don’t share?

So I guess from now on, I’ll try to let go of my “blog-worthiness” rule and try to write from the heart. Of course, there are still aspects of my life that I cannot share, but I cannot share those at all.

Preverbal Trauma

Posted on by Astrid

Today, I wrote in a Facebook group about preverbal trauma. I know for a fact that I endured a lot that could have caused PTSD from birth on. I was born prematurely, spent the first three months of my life in hospital and was hospitalized several more times before the age of five.

About seven or eight years ago, I started experiencing body memories that I immediately associated with a medical emergency that I endured at age four. At the time, my trachea closed up and I as a result had difficulty breathing. I never completely repressed that memory, always knew that it’s something that actually did happen.

So I wonder if I made said association because it makes more sense than connecting the body memory to preverbal trauma. I mean, preverbal trauma is very controversial, because people do not form that clear memories until the age of three. That doesn’t mean people cannot be affected by preverbal trauma. It just means the memory is hard to recover.

I have alters. About six years ago, an alter emerged that is constantly curled up in a fetal position. We don’t know more about her. A seven-year-old alter who also emerged around that same time talks about that alter as a baby in the incubator. Now of course babies in incubators are not in the fetal position, so yeah.

Still, it all makes me wonder whether I’m making all this trauma stuff up. I mean, yes, I was born prematurely. Yes, I spent three months in hospital and had repeated re-admissions before the age of five. But my parents say that until age seven, I was completely fine and carefree. I mean, it’s not like everyone who endured trauma develops PTSD. So could it be I’m just making this whole preverbal trauma thing up?

In a preemie parent support group, I asked whether anyone has experience with their child getting EMDR for medical trauma. I have always wondered whether EMDR could help me. It was recommended when I had just been diagnosed with dissociative identity disorder in 2010. Then I heard it’s not recommended unless you’re very stable otherwise. Well, the consultant I talked with on Monday said that’s no longer the case. So maybe I could benefit from it. Several parents responded about reading their child a “life story” about their birth and hospital stay while the psychologist did the EMDR. Since my parents aren’t very supportive, I cannot ask them to help me with this, but I could create my own life story based on what my alers tell me.

Consultation Meeting at Day Activities

Posted on by Astrid

So I had a meeting with the Center for Consultation and Expertise consultant at day activities this morning. First, I talked some with her alone. We discussed my care needs in some more depth than we’d done when she’d visited me and my husband at our home. I still feel the ideal situation is that my husband and I could still live togehter but close by a care facility. I also mentioned that, though my husband supports me wherever I go, he has some reservations about us living in a lean-on apartment together. A lean-on apartment is where you still live independently, but close by a care facility. Since my husband and I together make too much money for renting a home too, and we don’t have a huge financial reserve, choices are limited. This means most likely I’ll either have to manage with the same amount of care I get now, but we could move to a larger town, or I’ll need to go the long-term care route and essentially live away from my husband during the week. I can manage okay’ish now and I don’t want to risk my marriage for better care, so I’ve already reluctantly set my mind on the former.

We also discussed my needs for mental health treatment. We discussed the insiders and I named a few. The consultant, herself an educational psychologist, took my experience surprisingly seriously. I had expected she wouldn’t, given how she seemed to respond when my husband said he’s married to Astrid, “pieces” or not. I mentioned having come out to my psychiatrist. I’ll have a meeting with her and my nurse practitioner on October 2. I mentioned the psychiatrist having said that my treatment may take another five years. Again surprisingly, the consultant didn’t react negatively to that, saying instead that if I felt it’d be beneficial in the end, I should go for it. We also went into childhood trauma a bit, which is the reason the insiders are here. The consultant recommended I discuss getting EMDR with my psychiatrist and nurse practitioner. I said this had been recommended by the psychologist who rediagnosed me with autism in 2017 and on whose report my treatment plan is based. However, that psychologist recommended I do dialectical behavior therapy first. The consultant disagreed, saying that nowadays, people who aren’t very stable or even people with intellectual disabilities can benefit from modified EMDR. She mentioned a therapist’s name that I couldn’t fully understand and a quick Google search came up with nothing.

Then, we drank coffee and after that, the consultant talked with my day activities staff. She asked what activities I do during the day. She also recommended my staff respond proactively to my becoming overloaded. I’m not so sure I like that, but I think it’s for my own good anyway. I mean, we again went on a long walk this morning and I couldn’t fully keep up. As a result, at the end the staff decided not to take me on the full, hour-long walk again for now. I so badly want to meet my goal of 10,000 steps a day, so I feel pretty awful having to cut back.

On October 4, the consultant will make her recommendations at a meeting with my home support coordinator, assigned day activities staff and me. I’m hoping for the best.

Body Image

Posted on by Astrid

Once again, carol anne inspired me to write this post with her question of the day. She asks whether we are happy with our looks. In this post, I’m going to share about my body image struggles.

If I have to be truly honest, I have no idea whether I’m happy with the way I look. The reason may be a bit baffling: I have no idea what I look like really. I after all haven’t been able to see myself in the mirror in roughly 20 years.

I do know, as a result of having in the past seen myself, that I have dark hair. However, when my husband commented recently on the fact that I’d gotten a grey hair, I had no idea what it’d look like. I have been able to see my father with a lot of grey hair, but that’s still different.

Of course, unlike what sighted people commonly believe, blind people are not immune to body image issues though. Carol anne is blind. So am I. Both of us do struggle with body image. After all, even though I can’t see it, I can feel that I have a few extra pounds and that my body fat is mainly concentrated on my belly. I definitely am not happy with that.

I also may not be able to see my grey hairs, but I’m definitely able to rationalize that my body is growing older. This brings with it its own kind of body image issues, as some of my alters are younger than me and as a result have not adjusted to an aging body. The most striking example is our 13-year-old Agnes, who is still adjusting to the fact that we have breasts. She has disordered eating tendencies and at one point was active on pro-ana sites. There, someone once asked whether we’d want our breasts to go away if we’d become extremely thin. Most people said no, but Agnes replied with a resounding yes.

Adjusting to an aging body also affects our attitude towards the fact that we’re overweight. In a similar but different way that Agnes wants our breasts gone, some of us actually think that we’re not as heavy as we are. This makes committing to weight loss harder.

A Profound Psychiatrist’s Appointment

Posted on by Astrid

So we had a psychiatrist’s appointment today. Originally, our psychiatrist had asked to see our husband too, but he didn’t want to come. I was a little late due to transportation issues, but we still covered many profound topics.

First, we went into why our husband didn’t want to come to the appointment with us. The psychiatrist was careful not to let me speak through her for my husband or vice versa. I liked this.

Then we went into our treatment goals and why we’re going extremely slowly with the dialectical behavior therapy program we’re following. Our nurse practitioner had already explained that he’d like us to fully understand the concepts before moving on to the next chapter, so that’s why in three months we’ve not gotten beyond the second chapter, which covers core mindfulness skills. There are 24 chapters in the course. Normally, BPD clients in group therapy do one chapter for each session and so they can finish the course within six months.

I started to explain how I find it incredibly hard to apply the skills into my daily life. Like, there’s one skill called observe, which is intended for taking a little distance (without dissociating) from an overwhelming emotion. For example, you can start by observing what you feel or think without describing it. I thought an example of this distance-taking was to do arithmetic in your head. My psychiatrist says that’s a step too far, as we first need to observe that we’re experiencing an overwhelming emotion (or physical sensation). Then we can take a step back and decide what to do with it. I mentioned the physical sensation of needing to use the toilet, which commonly overwhelms me to the point where I can no longer act fully functionally. (Because I am blind, in most places, going to the loo requires me to ask someone to show me where it is, which requires communication we don’t have access to when overwhelmed.) The psychiatrist told me that, if I do observe this feeling on time, I can still decide what to do with it out of my Wise Mind (DBT jargon for the right combo of feeling and thinking).

Then we went on to discuss the “pieces”, as we call the alters qwhen our mental health team are around (as to avoid self-diagnosing). Our psychiatrist asked us to describe some experiences relating to them, like how many are there (around 25) and what happens when we switch. She then asked whether all of us could agree that there is just one body, whether we like it or not. This was a truly profound question. First, she had us clap our hands and asked whether any of us are still convinced they could use those hands to cover their ears and not listen to what she had to say. That didn’t work, as we still dissociated a little. Then, she held our right hand and asked the same, repeatedly. This brought on a ton of emotional reactions, mostly wonder. We couldn’t say much, but later, when in the taxi back home, some of us were like: “I may not be able to cover my ears w ith those hands, but I can still run from that psychiatrist. Oh no, I can’t, as she’s holding my hand.”

We also went into how to do treatment from here on. We sort of sarcastically said maybe it’s going to take us five years. Our psychiatrist said that, if we truly want to make this work, to count on it that it’ll take that long indeed. I’m not sure how we feel about this. I mean, when we first started DBT a year ago, we were told by this same psychiatrist to do one chapter every two weeks and finish in a year. Of course, we found out pretty soon that this wasn’t working and a lot of other issues got in the way, so we restarted about three months ago.

We’ll meet with our psychiatrist and nurse practitioner together someday in September. Our psychiatrist will then explain a little about how to go from here and then we can hopefully decide whether we want this or not.

At the end, the psychiatrist shook our hand and said: “Now I’m giving you (plural) a hand and say goodbye.” That was such a validating experience. It was good to be validated like we’re multiple minds but also contained in that we only have this one body. As a side note, neither of us ever mentioned DID or dissociation. We think that’s a good thing, in that we don’t need to conform (yet) to any diagnostic box. After all, we don’t “want” to be DID, but we are multiple whether we want it or not.

Movement Therapy Again

Posted on by Astrid

It’s incredibly hot (yes, it’s *still* incredibly hot) and I’m not too motivated to write. However, we had movement therapy again today and I feel pretty much obligated to share about it, since our last session didn’t go well.

I was feeling somewhat stressed but also capable of communicating my feelings at the start. I explained about having fought with the therapist about her asking for Astrid to come back. I just realized yesterday how unhelpful this can be on several levels. It’s not just that it creates a fight between us and the therapist. If the one who thinks she’s truly Astrid truly appears, she’s often quite disoriented. Yesterday she did after Marieke tried to be open about herself. I don’t know whether she’s truly the core or just a part who denies our existence. I like to view us as a system as altogether Astrid, but this Astrid part is clearly not us as a whole and can still feel quite dissociated. But I digress.

I told the movement therapist that I’d prefer her asking us to get back into an adult state if we seem to dissociate. This was fine by her, so when this had been cleared up, we could proceed with the session.

I disclosed that our mind was quite full of thoughts. Actually, it was several others chattering but I didn’t say so as to not start another argument. We then did a concentration exercise. We had to move a one-meter-long stick that was standing up from one hand to the other without dropping it. Then from one finger to the same or next finger on the other hand. This was quite a challenging activity and we liked it.

After that, we did a sensory activity with a spiky ball. I was out in the body but Marieke and Suzanne were close by. I chatted to the therapist while they felt and enjoyed the ball. After this, we did a ball-throwing activity. This was definitely calming and enjoyable. It helped that the others had already had their time close by the front, I think.

Creating an Inside Beach

Posted on by Astrid

Hi hi, I am Milou. I am 8-years-old and I have blonde hair. Earlier today, Allie wrote about creating an inside beach in therapy. I want one too! I really want to go back to Vlieland to see the real beach, but the bigs say I can’t. So now Esther is helping me create an inside beach. She put up real beach sounds on the computer for me to listen to.

I hear the waves. They are the North Sea waves. I love swimming in the North Sea. The bigs say I can’t go in too far.

I see the sun. It’s evening now that I write this, so the sun is going down soon. I love seeing the sunset. The sun is bright orange.

I can feel the sand under my feet. I can play in the sand. I like to build jellyfish castles. Yeah, that’s real, I add dead jellyfish to my sand castles. The bigs laugh and say it’s yuck. I can also dig a hole in the sand.

The sun has been shining all day, so the breakwaters (that’s what I’m told they’re called in English) are hot. You can stomp your foot in them and leave a footprint. You can also write your name in them with a pointy object. Read me write “MILOU”.

Oh, this was such a fun activity! Like Allie said, we can always add more to our inside beach. I can come play here whenever I want. Nighty-nighty from Milou.

Quote of the Day (July 26, 2018): The Way to Get Started

Posted on by Astrid

“The way to get started is to quit talking and begin doing.” – Walt Disney

This sure has to got to be the motto for this blog. And maybe for my healing journey as a whole. I may talk healing, but if I don’t work hard in therapy and such, I’ll not accomplish much.

This also reminds me of a conversation we had a few days ago with our husband. I said I miss talking to him, really connecting to him, like I did when I allowed my alters to be who they are. I thought my husband didn’t want us to be us. This isn’t the case. My husband told me to actually stop talking openness and connection and start opening up. That’s the only way to actually connect. And though that opening up involved talking, it also involved connecting on a deeper, more-than-words-can-say level. We loved it.

Movement Therapy Yesterday

Posted on by Astrid

Trigger warning: strong language.

So yesterday we had movement therapy. We feel it’s really helping but we also switch a lot during this type of therapy. We’re not formally diagnosed with a dissociative disorder. Were formally diagnosed DID but that got changed to BPD five years ago. Our current mental health team’s opinion is that the “pieces” are allowed to be there but there’s no need for a dissociative disorder diagnosis or any form of specialized treatment. We do DBT individually with our nurse practitioner (not in a group because we’re autistic and would be overwhelmed by a group) and the movement therapist tries to incorporate some DBT too. We really try to fit our “pieces” into the DBT model of emotional/rationa/wise mind (we purposefully avoid the word “alters” as to not suggest we self-diagnose, as our former psychologist believed we made up the DID).

The thing is, Astrid is rarely out. That is, always when we think we’ve found the core or “real” Astrid, we realize it’s yet another alter. We don’t mind as most adults can present as Astrid and act pretty much normally. However, yesterday in movement therapy Katinka was out from the start (she’s one of the main fronters). Then for some reason Suzanne popped out and the therapist called for Astrid to come back. Katinka came back with some difficulty and explained that she’s fine being called Astrid but she isn’t Astrid. The therapist insisted that she may be Katinka now but Astrid was out at the beginning. It was quickly time to end the session and we were still pretty spacey but didn’t say so. To be honest we didn’t feel fully safe to go home yet (one of us was having destructive urges), but we didn’t say anything and managed to go home anyway.

Now some of us are thinking of quitting movement therapy or the whole mental health treatment altogether. We’ve run into just a little too many disagreements with our treatment team. I mean, they’re overall good people, not like our former psychologist who just was one giant bitch. We don’t need a fucking DID diagnosis (we’re not fully DID actually). We’re fine calling ourselves pieces or whatever, but we’re not going away. Now we’re pretty sure we’re going to be taken out of movement therapy for it destabilizing us. Well, whatever. If the goal is to keep us acting apparently normally all the time, then we don’t need nor want no fucking mental health treatment for that.