Mental Health Ramble

I want to write, but I’m feeling stuck. A thousand thoughts are going through my mind. I’m not even sure that I’m being myself as I write this. Who am I, anyway? I don’t know. I can pinpoint it fairly clearly when I’m in one of my ego states. When I’m not, I doubt everything.

I would’ve had DBT yesterday, but my nurse practitioner was off sick. The psychiatrist would be calling me, but when she did, I pushed the wrong button. She left a message saying she wanted to call me because my nurse practitioner is off sick, but also to discuss “how things are progressing”. I’m guessing she’ll tell me off for wanting to go into supported housing, for feeling happy in developmental disabilities services and for not being sure I feel mental health treatment is benefiting me.

Right now, I’m not sure I care. I’m not sure whether I want to go the route my psychiatrist is wanting me to go, which is do DBT for now and be put on the list for trauma diagnosis. I don’t even know for sure whether my trauma symptoms are severe enough to warrant treatment, or whether I want them to be. Usually whenever I doubt this, it’s a sign that some memory or new aspect of myself is surfacing. I have no idea this time.

I feel, above all, that what I need is safety. This means being assured that I get the support I need. I’m mot sure my psychiatrist is of that opinion too. She told me at our last meeting in early October, that she felt day activities were underserving me, not challenging me enough. I panicked, called my support coordinator, who called the consultant psychologist involved in my case. She then E-mailed my psychiatrist. Maybe the way I did it, it feels as though I’m trying to use the cosultant to tell my psychiatrist off. That wasn’t my intention.

That being said, I do feel much more comfotable with my support team from the intellectual disability agency than with my treatment team from mental health. I don’t know whether that means I’m too comfortable being taken care of. I don’t know whether I care.

Anyway, my psychiatrist will be calling me again on Tuesday. Then I’ll be at day activities, so if I feel distressed by something she says, I can go to one of the staff.

Lessons Learned from Regret #Write31Days

Welcome to day three in my #Write31Days challenge on personal growth. Today, I picked a writing prompt from The Self-Exploration Journal, which is a 90-day challenge. The prompt is about something you regret. What did this experience teach you in the end?

I am choosing my decision to move from the city of Nijmegen psychiatric resocialization unit to a long-term care unit in Wolfheze, a town near Arnhem in 2013.

The rationale for this decision was totally understandable. My husband lived in Doorwerth, a town neighboring on Wolfheze. Since we were exploring the possibility of me moving out of the mental institution and in with him, it seemed just about logical that I’d move to Wolfheze.

What I hadn’t anticipated was that I’d encounter less than supportive staff in Wolfheze. When I went for an intake interview, the responsible psychologist wanted to place me in a sociotherapeutic house, whch meant you’d live practically independently with a few other clients but the staff would come to your house at set times. They reasoned this would be the best preparation for independent living. I don’t think they’re wrong about that, but it became more and more apparent that I couldn’t cope with independent living like this.

So I opted to go into the long-term unit with 24-hour care instead. Even this was a huge adjustment, as staff started expecting me to learn practical independence skills that were too overwhelming.

My new psychologist also pretty soon removed my diagnosis of dissociative identity disorder and PTSD, changing it to borderline personality disorder. From there, it went further downhill. My first psychologist was good enough. She eventually did realize that I’d need lots of long-term support even when going into independent living.

In 2014, I got a new psychologist. This wasn’t my decision, but the old one was leaving. This psychologist had the worst impact on me of all mental health professionals I’ve had in those 9 1/2 years in an institution. She decided right from the start that I’m not autistic. She started to tell me I have acquired brain injury and need to go into a training home to learn independence skills for that. Now let me tell you, i already went into a training home that caters to among other people, those who are blind and those with acquired brain injury. I am confident that this training home offered me the best possible independence training. Yet because it failed, I had failed and I had to try all over again. Since I didn’twant that, I was dependent and misusing care and needed to be kicked out of the institution.

I was eventually kicked out of the institution in 2017. I only later learned that it wasn’t about me, but about the huge budgets cuts to mental health. Of course, the Nijmegen institution would have to face budget cuts too, so I might’ve gone the same route had I stayed in Nijmegen. However, then at least I’d have had supportive staff.

What I learned from this whole thing is that supportive people are the most important. You can live in a better home or a better area, but if the people who support you through and through aren’t there, it’s not going to work.

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

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

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.

Five Years

Today marks five years since our DID diagnosis got removed and changed to BPD. I’m not sure how to feel about it. I mean, that diagnosis was most likely incorrect but so is the BPD (which later got downgraded to BPD traits, which I do think we have but then again who doesn’t?). I mean, we rarely if ever experience amnesia and don’t go around disclosing ourselves when it’s not safe, but we do clearly exist as multiple identities.

Besides, the therapist who diagnosed us with DID at least took us more seriously than any before or after her (except for maybe our current psychiatrist, whom we just came out to three weeks ago). She didn’t allow us to be out with the nursing staff, which was okay’ish with us, but she did allow all of us to talk to her and didn’t try to fit us in a therapeutic box. The therapist who changed our diagnosis to BPD did, mislabeling Jane as a “punitive parent” and telling her to go away.

We at one point insisted on getting formal testing for DID. The therapist administered the SCID-D (a structured interview for diagnosing dissociation) to us but never finished the report. I wish she had even if it showed we’re fake. I mean, we have a right to information, don’t we? She also never responded to our E-mail, once our diagnosis was changed, asking her whether she’d ever suspected BPD in us.

I feel really odd now. I don’t know where we’re headed with regards to our mental health treatment. It’s all so scary. What if we’re really all imaginary? Since it’s unlikely we’ll ever be diagnosed with a dissociative disorder or get related trauma treatment again, will we ever learn to not exist?

A while back, someone asked in an FB group what happens to those misdiagnosed with DID after they get de-diagnosed. Whether their parts vanish. I don’t know really what I hope happens to us. I mean, we’ve tried to hide for a long time after our diagnosis got changed, but it was unsuccessful. We’ve tried to identify with the natural/endogenic multiple community before, since we felt not having a diagnosis meant we shouldn’t intrude upon the DID community. That was unsuccessful too. Does the fact that we can’t hide successfully for a long time mean we’re real after all, or does it mean I’m just terribly stubborn? I initially wrote “we” instead of “I”, but of course if we’re fake, we are not we anymore and never have been.

A Profound Psychiatrist’s Appointment

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.

How to Proceed in Our Mental Health Treatment

So we met with our nurse practitioner for dialectical behavior therapy again. This was our first session since I started considering dropping out. I am still unsure as to what I want, but I’m pretty sure that just working the manual in a very structured way isn’t working for me. I also wondered out loud how long this treatment is going to take and whether I think it’s worth it. With regards to this, my nurse practitioner explained that behavor change takes a long time because we learned our patterns from babyhood on.

We started discussing the “pieces”, as we call the alters when talking with our treatment team. My nurse practitioner said he wants to discuss this with the psychiatrist. I doubt much will come out of that, as the psychiatrist keeps the status quo as to whether we’re dissociative or not. She most likely believes we’re not, but wants to bring it diplomatically.

We went some into our original trauma, which involves my parents not having been given a choice as to whether I should be actively treated after my premature birth. They weren’t sure themselves and were told the doctors were keeping me alive and not to interfere or they’d lose parental rights.

My nurse practitioner also mentioned a book and movie about a person with multiple personalities (possibly Sybil). I am pretty sure my psychiatrist is going to stomp that association right out of him, as like I said, she probably doesn’t believe I’m dissociative.

After leaving the session, we were pretty unquiet. Katinka tried taking over from Clarissa, who usually does DBT, to get back into daily functioning mode. That was only partly successful. Our support coordinator arrived ten minutes after we got home and we were still pretty unquiet. We were able to calm down eventually and enjoy a walk.

In the evening, when our husband got home, we discussed the session with him and asked him to come to our next psychiatrist’s appointment on Tuesday. The original reason the psychiatrist had asked him to come is that she’d gotten the impression that we have relationship struggles. That upset my husband, of course. I finally managed to say that I want to discuss where to go from here regarding treatment.

There are several options. I could proceed as I have until now, which seems like the least productive option. I could stop going to therapy altogether or just stay with the team for med management and the ability to call someone when not feeling well. Or I could do more supportive therapy focusing on my emotional pain. This then could again be focused on several aspects of my life and it could or could not involve the “pieces”. I think that last option sounds best to me, but since it wouldn’t likely be based on a protocol such as DBT, I don’t think my psychiatrist would accept this. A fourth option, which I just realized when talking to someone on Facebook, is staying with my current team for med management and crisis support and going to another therapist for formal psychotherapy. I don’t think that’s a realistic otpion though.

She Walked Through Fire

She walked through fire but was not burned by it. Her body did not show a sign of the path she’d been traveling through the burning forest or her life. She did not feel pain. She had all feeling neatly folded away in the dirty laundry drawer in her mind. Over the years, walking through a little too many fires, she’d grown accustomed to not showing their effects. She was not burned – at least, not visibly so.

A few months ago, I read up on somatoform dissociation. It is where there’s a disconnect between your body and your mind and it shows itself physically, as opposed to psychologically. Psychological dissociation is a distortion in memory, sense of self or identity. Somatoform dissociation manifests itself in distortions to your physical experience. For example, you may not feel sensation in a particular body part for a while (not explained by the body part just having “fallen asleep”). Or you may have a strong aversion to a food or smell you normally like. You may even react differently to medications depending on your state of mind.

While it is unlikely that someone would not have physical burns from walking through an actual fire, the psychological equivalent describes perfectly what it is like to dissociate. In dissociation, you lock away the feelings or memories associated with a trauma into the unconscious. You walk through a psychological fire (experience a trauma) but don’t get burned – at least, not visibly so.

I once read in a women’s magazine about a person with dissociative identity disorder (DID). This woman’s doctor explained that everyone has a breaking point in life and this may be why people with DID may be able to hold it together for years after their early childhood trauma, but fall apart eventually. In other words, they lock away the pain and burns from walking through fire until a minor injury – hurting their index finger – tears open the horrible burn wounds. In my own case, I was fifteen when I first realized I dissociate, but 23 when I experienced this breaking point. I think the breaking point happened after I was attacked by a fellow patient on the resocialization unit of the psychiatric hospital. I wasn’t diagnosed with DID till more than a year later and that diagnosis has since been taken away, but the psychological burn wounds never disappeared.

This post is part of Reena’s Exploration Challenge #48.

Movement Therapy Again

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.

Call #SoCS

I just got my prescription phone call service re-approved last Thursday. The prescription phone call service is where I can call a mental health nurse at the psychiatric hospital for support when I’m not feeling well but not yet in full-blown crisis. This is for out of office hours, as I can call my mental health treatment team within office hours.

The thing is though, like I said before, I may need to be able to call someone in such cases for a long while to come. The call service got approved for six months and my nurse said we’d really need to look at whether I’d still need it after those six months. I believe I would, but maybe by that time, we’ve found another agency to fill this gap. Such as the disability service agency I get my home support and day activities from now.

I really hope that I can someday do without mental health treatment. People in FB groups were saying that I may confuse not having a mental illness with not wanting the stigma of a mental illness, when I said that maybe I’m just autistic and not borderline at all. I do obviously believe we’re multiple (ie. some form of dissociative identity disorder), but the mental health team doesn’t believe this. Fine by me. Then we don’t get treatment for that. We’re relatively functional anyway and we’d rather not have any treatment than a treatment that doesn’t validate us.

This post is part of Stream of Consciousness Saturday.