Working On Us Prompt: Coping With Crisis

Today, I’m once again joining in with Beckie’s Working On Us Prompt. This week, the topic is to write a narrative of what works for you when facing a panic or anxiety attack, manic episode or other crisis. I don’t get panic or anxiety attacks much or mania at all, so I’m going to describe what works for me when I’m in an emotionally dysregulated crisis.

Like I’ve said before, I have BPD (traits). These are also known as emotion regulation issues. I also experience complex PTSD symptoms. Both can cause me to suffer emotional outbursts. In addition, I can get severely overloaded due to my autism. This can cause me meltdowns, which in some ways are similar to BPD outbursts. In fact, I’m not 100% sure my BPD diagnosis is correct given that autistics, particularly women, are often misdiagnosed as BPD.

Anyway, I usually notice an outburst coming on when I experience an increase in sensory reactivity. I also often start to experience a decrease in my language abilities. I start to stutter or can only make humming noises and repeat the same phrases. My staff at day activities say that when in this state, my communication abilities resemble those of a toddler. It is interesting, in that we have only one toddler alter. When I can’t do something to calm down, I may progress to a full-blown state of meltdown, in which I become angry and sometimes aggressive or self-injurious.

What helps me when I’m in such a state, is to physicaly remove myself from the situation. This is hard though, as often it feels as though everything that happens around me is important. Usually, my staff help me by clarifying what’s important and what is not.

Of course, now that I still live independently, I don’t always have a staff member available to help me sort through a crisis or make suggestions on how I can cope. I, however, have a phone number of a psych hospital I can call in a state when I’m close to a crisis. They can’t do much but listen to me and try to offer advice, but it’s definitely been helpful in some situations. The mental health team that treats me also has a staff available on the phone for crisis intervention during office hours.

Sometimes, when I’m in a really bad crisis, I take my PRN lorazepam. However, I have some experience with it being overused on me in the psych hospital. Like, whenever I’d react to a sound in an irritated tone of voice, staff would tell me to take a lorazepam rather than helping me to figure out what was causing me overload. This has really gotten me weary of PRN medication.

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.

A Timeline of My Mental Health

And yet again, I did not write for almost an entire week. My cold is gone, but now I’m fighting the strong pull of depression. I’m having really dark images in my mind, particularly at night. During the day, I can manage, but often feel too unmotivated and/or uninspired to write.

For this reason, I dug up one of my many collections of journaling prompts. A prompt that spoke to me is to draw a timeline of my life. I’m pretty sure I did this already, but can’t remember whether it was here or on one of my old blogs. I searched this blog for “timeline” and nothing came up, so if this is a duplicate post, I’m sorry. I think I wrote a timeline of my mental health on my previous blog in 2015 or 2016, but I’m just going to write one again.

2006: This was when I entered mental health services for the first time. I had my first appointment with a psychiatry resident on December 12. I was very nervous and could hardly speak a word.

2007: The most eventful year. First, in March, I got diagnosed with autism. I started treatment with a community psychiatric nurse. In July, I started my first psychiatric medication (other than sleeping pills for a while in 2006), an antipsychotic called Risperdal. This was a week before I moved out of independence training to go live on my own. In October, I stopped my antipsychotic again. In November, I landed in a suicidal crisis and was hospitalized.

2008: I remained on the locked acute unit for this entire year. Various follow-up placements were discussed, but none wanted me.

2009: I moved to the resocialization unit.

2010: I got diagnosed with dissociative identity disorder and PTSD in addition to my autism. I started medication again. First, just Abilify (an antipsychotic), but then, Celexa (an antidepressant) was added. I also was put on the waiting list for a workhome for autistic people.

2011: The workhome didn’t work out (no pun intended). Other options were unsuitable for various reasons.

2012: I started to think that maybe I could live with my husband. This wasn’t because I really wanted it (or thought I could do it), but because every other option seemed to have been exhausted and at least my husband wasn’t going to refuse to be with me for needing too much care.

2013: I moved to the hospital closest to where my husband and I had rented an apartment. This was one of the biggest mistakes I’ve made in life. First, my diagnosis of DID and PTSD got changed to borderline personality disorder. This should’ve been a warning sign.

2014: I had to change psychologists. My new one said at our first appt that she didn’t believe I’m autistic.

2015: My husband moved to our cuurrent house. I tried to arrange to be transferred again, but this was refused by my social worker and psychologist. I tried to make arrangements to be placed in supported housing in my new area, but got told that the train has to move on and I had to live with my husband.

2016: My autism diagnosis got removed and replaced by dependent personality disorder, BPD traits and depression not otherwise specified. The process by which this diagnosis came to be, was the weirdest I’ve ever seen.

2017: I got kicked out of the hospital with almost no after care. In my final week, I got some day activities arranged, but that was it. Thankfully, I did get my autism diagnosis back after seeking a second opinion. My current treatment team agree with this diagnosis.

2018: I had a mental crisis at day activities and was told I had to leave that place. Thankfully, I found another place. I started dialectical behavior therapy and movement therapy, but quit again too because I couldn’t really apply what I’d learned. I finally got put on an effective dose of my antidepressant.

2019: I currently get only suppportive counseling with my nurse practitioner. I still take the high dose of both Abilify and Celexa. Would someday like to lower my Abilify dose, but that’s something for the future.

Healing From Childhood Trauma: Progress I’ve Made #AtoZChallenge

Welcome to the #AtoZChallenge, day eight. It’s already nearly 9PM as I start writing this post. I wasn’t home from day activities till 5PM, then had dinner and then drove 50 minutes one way with my husband to pick something up he had bought. On our way back, we stopped by McDonald’s, which was fun.

Anyway, today’s theme is healing. I was inspired to choose this theme by yesterday’s post, in which my final goal was to heal from my childhood trauma. Let me share today how far I’ve come on my journey.

My trauma-based symptoms first became fully apparent in 2009 or 2010. I had moved from a locked acute psych unit to a resocialization unit in early 2009. Once I developed trust in my staff, I apparently felt more ready to uncover the trauma-based conditions I’ve been living with all my life. You see, my trauma started early on and is in some respects ongoing.

When I started to open up about my symptoms, it still took a long time for them to be diagnosed as first dissociative identity disorder and PTSD and later borderline personality disorder. Borderline personality disorder shares a ton of symptoms with complex PTSD and I think that’s what I have.

I have never been in formal trauma therapy. The reason is that, first, it was hard to find a therapist with expertise on DID. Once I’d found one, my diagnosis had been changed and I was assumed to be making it up.

As a result, I’ve done most healing on my own. I got the book Coping with Trauma-Related Dissociation as soon as it came out in 2011. I worked through some of it on my own, but that wasn’t helping much. Talking a lot about my experiences was.

After I’d been talking through my experiences for a long while with my resocialization unit staff, my classic PTSD symptoms started to fade. Unfortunately, they’ve been back to an extent lately. However, my emotion regulation issues are a lot less pronounced.

I still have dissociative symptoms. Accepting them and validating my alters has helped me manage these symptoms.

Since I experience ongoing stress that reminds me of my trauma, I don’t expect to find the peace to fully heal anytime soon. However, I really hope I can continue to make progress.

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.

DID Awareness Day and Plural Pride Day 2019

Today is DID Awareness Day and Plural Pride Day. I really want to share something for it, but I struggle with knowing what to share. I haven’t written about our experience of being plural in a long while, so maybe today I should jump at the opportunity. For today’s post, I am just going to introduce the subject of DID and our system to people who may not be aware.

Dissociative identity disorder (DID) is a trauma-based mental health condition in which the sufferer experiences two or more distinct identities or personality states, each with their own unique way of perceiving and relating to the world. People with DID also have amnesia for important information either in the present or past that is too extensive to be due to ordinary forgetfulness. People who do not have this type of amnesia, or whose identities are not fully formed, may be diagnosed with other specified dissociative disorder (OSDD) type 1A or 1B.

We were diagnosed with DID in 2010. At the time, we could be pretty in your face about ourselves, because we were in an environment where we felt relatively safe to be ourselves. This, however, also opened us up to suggestion, as our therapist concluded pretty early in the process that we have DID. Normally, a diagnosis of full-fledged DID is not made after initial assessment, but requires at least six months of therapy with a DID therapist.

Anyway, we probably do experience some level of amnesia, but didn’t know how to explain it to our therapist. For this reason, we would report we didn’t remember something, even though we showed in our actions that we did. This got people to assume we were faking our amnesia and by extension the whole dissociative experience.

When we moved from one psychiatric institution into another in 2013, we no longer felt safe. We actively denied the alters and started to explain ourselves away as bad moods. That’s probably one reason our diagnosis was changed from DID to borderline personality disorder (BPD). My next psychologist, some years later still, went so far as to say we invented our DID because we felt it’d be an interesting diagnosis. Well, no.

We first became aware of ourselves in the summer of 2001, when the body was fifteen. At the time, the host didn’t see the alters as part of herself. In fact, if I reread my diary from back then, it felt as though I was bordering on psychosis. I wasn’t though.

In early 2004, the alters started to appear more and claim their own names. We denied having “multiple personalities”, but only on the grounds that we didn’t lose time. Like I said above, while this could rule out full-fledged DID, it doesn’t necessarily do so (identity amnesia and amnesia for past events also counts), and it still means we’re multiple, ie. diagnosable with OSDD.

Currently, we don’t have a diagnosis of a dissociative disorder. We’re not ready to undergo the assessment process for it, as psychological assessments are a huge trigger for us. However, here we are, all 26 or so of us.

Psychiatrist’s Appointment Next Week

Next week, we’ll meet with our psychiatrist to discuss how to proceed in our mental health care. Whether we want to continue at all, and if so, how. We’re very nervous and still haven’t made a definite decision yet.

Our nurse practitioner is still off sick. Until a few days ago, I thought that we didn’t need any mental health care, so we were more or less okay with him having been off for over a month already. I felt that getting assessed for trauma-related conditions, as our psychiatrist had originally wanted, was just stressing us for no reason. Most likely, we wouldn’t be believed so just end up where we’re now, with a BPD diagnosis and required to do DBT. I guess we’d rather keep the status quo than be told we definitely don’t have trauma-related issues.

Then we thought, so what if we keep on merely surviving like we do now? If we don’t get therapy, will our mental health ever get any better? Besides, our psychiatrist had been talking discharge, even though she called it a break. So what if we end up in crisis?

Some of us were also feeling like our psychiatrist wants to get rid of us. Like we’re a pain in her neck. Lots of pain has been coming up and today, we nearly landed in crisis because of it. We called the mental health team, even though we’ve been feeling like we shouldn’t need them. Our former assigned nurse called us back. Thankfully, we had a good talk with her.

She said that not doing DBT or trauma therapy doesn’t mean we’d be discharged altogether. We could also just have an occasional supportive check-in with a nurse. That’s not what our psychiatrist said, but oh well. It also doesn’t mean we’ll never get therapy again, or something. Maybe we could take a break for half a year and see whether we want the assessment an dpossibly therapy then.

A lot of us are feeling all sorts of things. We feel attachment pain, which scares the crap out of some of us and makes some of us feel shameful. After all, our overreliance on mental health was the exact reason we got kicked out of the mental institution last year.

It doesn’t help that our support coordinator has also been off sick for over a week. I hope it’s just the flu. She’s supposed to go to the appt with us next week, but if she’s still sick, of course she won’t come. We did discuss our concerns with our staff at day activities yesterday and they offered to write our questions down for us.

As a side note, we had a very validating experience at day activities. When discussing our issues with mental health care, we mentioned DID (calling it multiple personality). Our staff said she’d seen us switch to a little girl. Wow. I didn’t know anyone could tell unless we use our own names.

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.

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.

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.