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.

Mental Health Ramble

The month of May is mental health awareness month. I’m not sure how much I can contribute to it. In fact, I only found out about it today. Since I have a cold right now, I really don’t feel like writing. Or really, I do, but my brain is too foggy I can’t come up with a coherent topic to write on. So I’m just going to ramble.

Since it’s mental health awareness month, I could share my story of how I found out I’m mentally ill. Then again, I honestly don’t know. Autism, which was my first diagnosis, isn’t a mental illness. Adjustment disorder, which I got diagnosed with upon my breakdown in 2007, isn’t really either. Thank goodness, it still qualified me for care back then. Since insurance coverage of care is diagnosis-based in the Netherlands, and adjusmtnet disorder is no longer covered, I wouldn’t have been able to get care with just that diagnosis later on. In this sense, it’s good that I was diagnosed with dissociative identity disorder and PTSD in 2010, then borderline personality disorder in 2013.

I am not even 100% sure I identify with mental illness myself. It’s really weird. If I were mentally ill, wouldn’t I need therapy? I don’t get any unless you count the meetings with my nurse practitioner every few weeks.

I don’t feel able to ask for more help on my own accord, even though I’m pretty sure I need it. I have been having a ton of weird symptoms lately and, though I’m getting by, is this really all there is to it?

I had a physical check-up at the mental health agency last February. I have a ton of issues that could be related to my mental health and/or the medication I take for it. Yes, despite the fact that I don’t even know whether I am currently diagnosed with anything other than autism, I take high doses of an antipsychotic and antidepressant. I don’t mind, but I do feel they need regular monitoring.

My psychiatrist would’ve seen me in March, at least that’s what she intended on in December. I still haven’t seen her. I do need to schedule an appt, but I’ve been taught through my years in the mental hospital that, unless you are a pain in the neck of others, there’s no need for you to see your treatment provider. I challenged this belief last year by scheduling an appot for my depression, but I”m not sure I can do it again.

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.

Depression: What It Feels Like #AtoZChallenge

Welcome to day four in the #AtoZChallenge. Today I am once again struggling to find the motivation to write. I also didn’t think up a topic for today until just now. Today’s topic is depression. Most people will have some basic knowledge of it, so this isn’t going to be a primarily informative post. Rather, I am sharing what depression feels like to me.

From age seven or eight on, I experienced depression. However, in my case, its main manifestation wasn’t sadness. I wasn’t crying all day. In fact, I rarely cry unless I’ve had a meltdown. Rather, my main manifestation was irritability. This is common in children and adolescents.

However, because my most obvious mental health symptom continued to be irritability into adulthood, I wasn’t diagnosed with depression until age 30. I had some assessments for it when in my twenties, but always checked off just a little too few boxes.

When I got diagnosed with depression in 2017, I first had a screening tool administered. This tool covered some of the more atypical symptoms of depression, such as feeling like a weight is on your body, gastrointestinal symptoms, etc.

Depression to me feels like a constant heaviness on my body. I can literally feel it weighing down on my shoulders.

Another important aspect of depression is feeling low. When I was first assessed for depression in 2007, I didn’t know what the feeling of depression meant, so the psychiatrist clarified it by asking if I’m sad. The thing is though, sadness and depression are very different. Though some people with depression cry all day, most don’t feel particularly sad. It also isn’t a situational thing, as sadness often is.

Another thing about depression is that most sufferers have trouble sleeping, eating and maintaining weight, resulting in weight loss. However, in my case, I sleep too much, eat too much and gain weight.

Suicidal thoughts are also a part of depression, but most severely depressed people are too lethargic to actually be actively suicidal. When I have vivid thoughts of ending my life, I can tell it’s usually more situational and due to emotion regulaiton issues. When I’m “just” depressed, the thought of ending my life is a constant lingering presence at the back of my mind.

Lastly, a common symptom of depression is psychomotor agitation or retardation. This means people get slower or conversely more restless. I tend to experience a mixture of both, but usually when I’m purely depressed, slowness is the overriding symptom.

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.

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I”m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

My Hopes for 2019

Happy new year everyone! Today and hopefully throughout this month, I’ll be joining in with Just Jot It! January or #JusJoJan for short, organized by Linda G. Hill. Today’s prompt is to reflect back on 2018 or write about your plans or resolutions for 2019. since I already wrote about my 2018, I’m going to use this post to jot down my hopes, goals and plans for 2019. Here goes.

1. Find suitable supported housing. This is my main hope for 2019. Of course, given my experience with finding (or not finding) supported housing out of the mental institution, I don’t have my hopes up too high. However, I at least want to get long-term care funding approved. That way, even if I don’t find a housing place, I can get more support in my current home than I get now.

2. Get back on track with healthier living. I didn’t gain any weight over the holidays and in 2018, lost a pound or 500 grams, while I expected I’d gained. I’m proud of that, but I’m still obese. Knowing that I’ve experienced some time when my BMI was under 30 this past year, I badly want to lose those two or three pounds it takes to be back at just overweight.

More importantly though, I want to embrace a healthier lifestyle. I want to exercise regularly and eat at least somewhat healthfully.

3. Blog regularly. In January, participating in #JusJoJan means I’ll have something to write about each day, as Linda will be posting prompts. I plan on writing regularly throughout the year though.

4. Get a new computer. I have had this on my list of plans ever since 2017. This year, I’m serious about it though, as I finally convinced my husband too that my current PC is outdated. I am seriously considering getting a Mac, as that’d mean I could do without having to get a screen reader separate from the operating system. I already love my iPhone, but I feel I need a computer too.

5. Stay mentally stable. Over 2018, I’ve not had serious crises other than the one in January that eventually got me kickked out of my old day activities place. I’m still considering terminating mental health treatment once I’ve found suited supported housing. After all, I’m pretty confident that the depression I suffered early in 2018 and that required an increase in my antidepressant dose, was caused by my difficulties coping at home and at day activities. I do still experience trauma-related symptoms, but at this point, they’re manageable.

What are your hopes for 2019?

Recovery

Today’s Sunday writing prompt over at Mindlovemisery’s Menagerie is “recovery”. This is such a commonly used word in mental health. “Recovery” is the ultimate goal for any mental health consumer or so it is assumed.

I attended a recovery course while in the mental institution in 2010-2011. It was very interesting. It was made clear that recovery is not the same as cure. You can be recovered and still live with a mental illness. Rather, recovery refers to getting as positive and fulfilling a life as possible. It is commonly used in conjunction with “rehabilitation”. The difference is though that rehabilitation is a treatment approach and is hence centered on the professional relationship, whereas recovery is completely patient-centered.

The recovery course I took was specifically for those residing on one of the long-term wards in the psychiatric hospital. This at first surprised me, since being hospitalized is clearly not having a fulfilling life. Or is it? I mean, if you can’t live independently, can you still consider yourself recovered.

I was at the time not planning on ever living independently. In fact, though I was engaged to my now husband, I was planning on going into a workhome, a long-term living environments for autistic people.

Here, it is important what I wrote above, that recovery is completely patient-centered. This means that, though it is believed that most people would want to live as independently as possible, if you don’t, that’s okay too. You are encouraged to make your own decisions, no matter how ill you are.

I have always been of the opinion that self-determination and self-reliance are not the same and shouldn’t necessarily be connected. I am pretty determined, but I’m not very self-reliant. I think personally that self-determination should be more important. Clearly, my last psychologist at the institution disagreed. She diagnosed me with dependent personality disorder, which according to the DSM is characterized by passiveness and an inability to stand up for oneself. I didn’t meet those criteria, but she felt I was asking for care she felt I didn’t need. She kicked me out of the institution almost with no after care. I survived, but I don’t feel well. Now it’s time to focus on self-determination. To try to reach the goals I set for myself.

Like I said, recovery is completely patient-centered. This is what I strive for. To me, recovery is feeling as well as possible. This means I can still work on recovery while going into long-term care.

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.