Tag Archives: Dissociation

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.

2018: The Year in Review

The year is nearly over. I have been debating whether to post a review of the year for a while, since I didn’t start this blog till late July. As such, most of the people who read it, may not be aware of what’s been going on for the first half of the year and I might need to explain too much. HOwever, I want to do this review for myself if for no-one else. Here goes.

The year started off rather bad, with me having a major meltdown at day activities on January 3. I didn’t know at the time how significant that event would be, but it was the one event that defined me for the rest of the year and probably into 2019.

I looked back at my old blog’s posts from January 2018, and I can’t believe how blissfully ignorant I was. In the second week, I chose “Be” as my word for the year, for I inteded 2018 to be a year for rest and staying present. A week later, it was decided that my day activities hours would be cut and I would eventually have to find a new place.

In late January, when I had more meltdowns at day activities, I started thinking of involving the Center for Consultation and Expertise (CCE) on my case. They had been involved with me in 2010 and 2013 previously and I’d hoped they could help me find some perspective. For those who don’t know, the CCE is an agency that helps people who fall through the cracks in the care system due to complex care needs and severe problem behavior. I didn’t really know whether my situation was bad enough, but I was desperate.

I was first told by my community psychiatric nurse, who called the CCE on my behalf and minimized my problems, that I’d have to go to the blindness agency for support. My need for sensory activities, after all, was due to blindness and I couldn’t possibly have severe problem behavior, as that would mean I couldn’t be married or live independently. This assertion caused huge internal turmoil. Some parts of me thought we must be too good for day activities and that’s why we’re being kicked out. After all, aren’t we oh so intelligent? Most of the partsin me felt desperate though and didn’t care about my IQ or our marriage in this sense for that matter.

With the help of my support coordinator, I finally was able to get an orientation meeting with the CCE in May. I apparently expressed my despair well enough that they took me seriously and found a consultant.

In the meantime, my support team and I didn’t sit still. This was why we had already found new day activities by the time we’d start the consultation at the end of July. At the time, I was feeling a bit conflicted about my living situation. My husband was trying to warm me up to the idea of buying a house in the city where he works. I didn’t feel like it, but I pushed those feelings aside. Until late September, that is.

Thankfully, the consultation hadn’t been completely closed by this time. I finally gave in to my feelings and admitted that I want to go into supported housing. I initially felt a lot of shame about this. I didn’t know whether my husband would be supportive and I knew my family wouldn’t be. Particulalry when creating my care plan and reading the application for long-term care funding, I felt embarrassed. There is this voice inside my head. It’s my mother telling me, shortly after my admission to the psychiatric hospital in 2007, that I can’t even wipe my butt without a support worker’s assistance. I can, but so what if I can’t?

My husband turned out to support me. The CCE consultant is willing to stay on my case until we’ve finalized the process of getting me long-term care funding. The application was finally mailed on the 20th of this month.

Can I say this year that I fulfilled my word of the year? Not really. However, over the past few months, since deciding to apply for long-term care, I’ve felt a certain sense of calm. It seems as though I hit rock bottom this year and I can only go up now.

Besides the day activities and living situation, other things happened too. My paternal grandma died. This, for whatever reason, helped me find the strength to distance myself a bit from my family of origin. Since no longer expecting them to be genuinely interested in my life, I’ve felt a sense of calm in this respect too.

I’ve also learned to accept mysselves, that is, my alters, as they are. I am still not fully at a point of accepting myself without the need for diagnostic labels, but I am getting close.

With regard to blogging, I’ve improved much in the past year. I’ve been able to keep a pretty regular blog for five months now. I am so glad I started this blog, even though sometimes I feel disappointed in my stats. This blog is where I can be myself.

Lucy At Home UK parenting blogger

A Very Validating Experience

As I write this, I deal with a nasty cold that I’ve been feeling come on for a few days but wasn’t willing to accept was coming on. Not that there’s anything I can do about it. Whenever one of us has a cold, my husband always searches the Internet to find out whether they’ve found a cure yet. So far, no luck. I’m not terribly sick as of yet anyway. I think my husband suffers almost more from the weird noises my body makes when I can barely breathe than I do.

A lot has been on my mind lately. I could of course write a gratitude list and devote a sentence or two to each thing. I may do that eventually, but right now, I want to share about a specific experience in more detail.

Last week, we told our staff at day activities about ourselves. We disclosed that we may have dissociative identity disorder (calling it multiple personality) and explained that it’s a trauma-based survival mechanism. The staff member we told was totally fine with it. She actually validated us, saying she’d seen a little come out to her.

Then on Monday this week, we had a flashback while at day activities. A fellow client needs to be given oxygen at times. This reminded one of our littles of the time we needed oxygen as a four-year-old because our trachea had closed up. An adult alter was able to explain this to a staff before the little came out, but then we could no longer keep ourselves from switching and the little popped out.

This little started talking to our staff, the one we’d come out to the week before. She asked to sit on the staff’s lap. We had agreed when we first came out as multiple that this is okay with both the staff and us. It was such a nurturing experience.

Afterwards, an adult did feel the need to check with this staff that it’d been alright with her, but it had been no problem. That’s a good thing about doing day activities at a center for intellectually disabled people. I’m pretty sure that in psychiatric care, we’d not be allowed to express such a “childish” need for affection.

A Letter to the Insiders

I want to write, but I don’t know where this is going. In fact, until I wrote down the title of this blog post just minutes ago, I had no idea I was even going to write a letter to my alters. I was inspired to do it by the recovery-based letters some people write to their mental health conditions.

Another thing that inspired me subconsciously, was a conversation with a dear friend on the need to integrate as part of treatment for dissociative identity disorder. This is often seen as the only possible end goal, and this dear friend was even told so on her first appointment with a therapist. We feel very strongly about this. First of all, integration is the third and last phase of treatment for DID, so it feels very wrong to discuss it at the very start. Second, integration can also mean living a functional life (ie. integration into society). I know many therapists, including I think our psychiatrists, feel a merger of all alters as somehow more healthy than living as a functional multiple. Well, agree to disagree.

The first phase of treatment is stabilization. This includes getting to know your system, learning to deal with feelings, developing inner communication, etc. After this, the second phase is trauma processing. Only once all traumas have been processed can you begin to integrate.

We don’t do DID treatment and aren’t likely to get it ever at all. After all, the diagnosis process scares the crap out of us and we’re unlikely to be believed. As such, it’s all the more important that we validate ourselves.

Dear you,

Welcome. We appreciate you. We are glad that you’re here, for you helped us survive. Without you, we wouldn’t be where we’re now. Thanks for that!

We know you may feel sad, or angry, or confused. that’s all okay. It may not feel okay to you, but that too is okay. Your feelings are valid. They’re there for a reason.

We want you to know there are people out there to support you. Inside, you have an entire system of alters that will help you be the best you you can be. If we work together – and that includes you -, we’ll heal.

Outside of the body, you’ll meet our support staff. Maybe you’ll be able to meet our mental health team too. Most of the people in our current life are supportive. We know this hasn’t always been the case and that’s one reason you’re here. We are here to help you heal from those experiences. You can trust us.

You may not be able to disclose your true identity as an alter to everyone, but there are people in the DID community you can talk to as yourself.

We hope this letter helped you feel a little bit safe. It’s still scary, but things will get better.

Love,

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.

Phone Appt With Our Psychiatrist

Like I said last week, we’d have a phone check-in with our psychiatrist on Tuesday. We called the team’s secretary fifteen minutes after the psychiatrist was due to call us. Normally we wouldn’t be so impatient, but we were at day activities and didn’t have our phone with us all the time. The secretary put us through to the psychiatrist.

The phone appt was better than some of us had expected. That was mostly due to the fact that the psychiatrist didn’t berate us for trying to get into supported housing. She didn’t comment on it at all, which confuses us a little.

The psychiatrist talked about her proposal in early October to get us on the waiting list for a trauma/dissociation assessment. This had given us a lot of stress. Some of us want it, because they feel it’ll enable us to get trauma-informed therapy. Most of us are scared though. Some of us don’t even believe we’re dissociative. Some of us do, but don’t think anyone will believe us. In short, most of us would only want the assessment if we knew it’d validate us. That’s unlikely though.

The psychiatrist also talked about our E-mail to our nurse practitioner. We had written to him that we’re unsure whether we want to continue with our DBT skills training, because we fear we’ll need to make ourselves look better than we are. I’m not even sure what whoever wrote that E-mail meant by it, but I know change is scary.

The psychiatrist now proposed to give us a “break” from treatment. This’d mean our GP would handle our medications and we’d basically be discharged from the mental health team. We could still get some sessions with our nurse practitioner to help us create a good crisis prevention plan for our support staff.

Many of us have all sorts of mixed feelings about this. Some feel relief, while others feel fear. Some cling to the wish for a trauma-informed therapist. Particularly the littles wish to be validated. I don’t know though whether that needs to be by a trauma therapist. They have so far felt most validated by our intellectual disability agency staff, after all.

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.

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.