Working On Us Prompt: If Disordered Eating Isn’t About Food or Weight

Today, I am once again joining in with the Working On Us Prompt. I hope the link works, as it once again gave me an error 404 when I tried to visit it. There are really two question prompts for this week’s Working On Us. I may post a separate post about the second question. The first asks what if eating disorders aren’t about food or weight? What are they about?

As a person with disordered eating tendencies, I can totally empathize with this question. I mean, yes, I am obese, but that in itself doesn’t qualify you for help with disordered eating other than a monthly kick in the ass from a dietitian. Well, that just isn’t enough for me.

Then again, I was told by my psychiatrist that I do not have an eating disorder, because the amount of food I eat during a “binge” isn’t big enough. Well, I understand. That doesn’t mean I don’t struggle with my relationship with food or weight.

Because that is really what disordered eating is all about: the relationship we have to food and our bodies. It isn’t about how much you eat, how much you weigh, or how often you exercise. It’s about the thoughts that go on in your mind.

For clarity’s sake: at the time that I was told I do not have an eating disorder, I was in the early stages of recovery from purging, which in itself does warrant an eating disorder not otherwise specified diagnosis. I was never fully bulimic, but I was coming close. That’s not my point though.

I struggle a lot with disordered thoughts about food and my weight. In fact, I think about food the majority of the time and those thoughts are not usually healthy.

Once, when I read a book about someone with an eating disorder, her psychiatrist suspected she was an alcoholic too. She administered a simple screening tool, which asked whether the girl had tried to cut back on alcohol, was getting annoyed or angry when people commented on her drinking, ever had alcohol first thing in the morning, and then there was another question. She answered “Yes” to three out of four questions. Well, I can answer yes to the three I remembered here when substituting alcohol with food. I occasionally overeat first thing in the morning, have very regularly and unsuccessfully tried to control my food intake, and I do get angry like all the freakin’ time when someone makes a comment about my food-related habits.

Yes, I knnow that to the outside observer, I appear like just an unmotivated, overindulgent fatass. What they don’t see are the inner battles I fight each and every day to deal with my disordered eating tendencies.

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.

When This Is All Over: A Letter From My Future Self

I am feeling rather low right now. I am in fact struggling somewhat with suicidal thoughts. To motivate myself to keep going, I’m writing a letter as if it were say 2021 (because in 2021, everything will be okay) and I am writing to myself right now. In other words, I am writing a letter from my future self to my current self. Of course, in this letter, I’m assuming that by 2021, I’ll be in long-term care. I really hope and pray I’ll be in long-term care much sooner, but I know that at least they won’t be able to deny me funding by 2021.

Dear you,

I see you. I feel your pain. I understand 2021 seems like far away and I know you hope to be granted long-term care funding earlier. I know you need it. I know you’re struggling right now, seeing that your application is likely to be turned down. I know your support staff are fighting like lions to get you funding. Please appreciate that.

Please don’t end your life now. Things will get better. I am here, in a suitable supported housing facility, looking at you. Look at me and please give me a chance. I don’t want to be dead.

Please, for the sake of me, keep going. You’ve been through so much already. I know that isn’t particularly motivating to keep going, as each disappointment drags you further down the rabbit hole of depression. However, I am here to guide you through.

Please, for your husband, keep going. He loves you. He supported you through the twelve years up to this point and he’ll support you through the rest of the time needed to finish this thing.

Please, for your parents, keep going. They may see you as manipulative. They may have felt in 2007 that the main reason not to kill yourself is that they’d have to pay for your funeral. They no longer do, but they don’t deserve to be proven right about the manipulativeness. Please keep on fighting and show them you can be a happy, positive person.

Please, for your support staff, keep going. You have the best support coordinator you could wish for. She fights like a lioness for what you need. She believes you. Please don’t let her down.

I know you want to be included on the Autistic Memorial Blog if your suicide is successful. Fine by me but I’d rather you be a living person rather than a statistic on a blog. I know you say that your suicide might wake up the politicians and policy-makers involved in healthcare, but they’re already working on changing the law. They can’t speed up things just because you’re gone.

And what if you attempt suicide but fail? Then you’ll be exactly where you are now, except that you’ll be there to remember your parents being proven right about your manipulativeness. Because quite frankly, killing yourself for political reasons is manipulative. I know that, if you ultimately decide to attempt suicide, you’ll not be thinking about this, as you’ll most likely act in an impulse. However, I am here on your blog to remind you that, as shit as this may be, suicidality won’t get you what you want, or even what you need. Look back at yourself in 2007 for that. You might get temporary relief from the current situation, but it won’t last and you won’t be relieved from yourself, except if you truly die. Which I know isn’t what you want or need either. Please, stay safe.

Me

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!