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

Posted on by Astrid

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.

#IWSG: Writing About Myself

Posted on by Astrid

Yay, it’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) to come together and share our writing journey. This past month has been better than the month of May. I wrote twice as many blog posts and have generally been feeling more motivated to write.

I still want to be more courageous and creative with my writing. I have been able to venture somewhat out of my comfort zone with a few stream of consciousness writings. I would still love to try my hand at poetry and flash fiction again, but am too insecure right now.

The optional question for this month’s #IWSG day is about incorporating aspects of yourself into your characters. Since I no longer write fiction and almost all my writings are about myself, this question may seem off.

However, when I still wrote fiction regularly, this question was very applicable. Not only did I incorporate a lot of aspects of myself into my characters, but the other way around too. Let me explain.

As regular readers of my blog might know, I have (currently undiagnosed) dissociative identity disorder (DID). This used to be known as multiple personality disorder. People with DID have at least two separate identities or personality states, each with their own unique way of perceiving and relating to the world.

DID usually first develops in early childhood as a result of prolonged trauma, but people who dissociated early on, often continue to do so during times of stress into adolescence and adulthood. For me, the time of my most serious dissociation was adolescence. This was also the time I wrote fiction the most. I incorporated a lot of aspects of myself into my characters. Often, my characters were blind or, if they weren’t, they faced some other challenge that set them apart. Most characters had difficulty making friends like myself. The main character in the story I got the farthest with, didn’t have a disability, but her mother had multiple sclerosis.

I often used writing as an escape from reality. As such, with my dissociative tendencies, some of my characters developed into alters. These are called fictives. One of them is now one of the main fronters (personalities presenting themselves to the outside world). She was in a way deliberately created. At least, the character was. I had difficulty explaining myself and my struggles to my parents and teachers, so my high school tutor allowed me to express myself through fiction. That’s how Kirsten came about. Kirsten is blind and has many of the struggles I do. Currently, we present as her when we can’t show the world that we have DID but we’re feeling very much split anyway.

Working On Us Prompt: Stigma

Posted on by Astrid

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.

The Summer After High School

Posted on by Astrid

It is still incredibly hot here. That is, it should be a lot cooler than it was yesterday. I’m not feeling it though. Probably my room, which is at the front of the house, keeps the heat.

I want to write, but I don’t know what about. For this reason, I looked up writing prompts for the month of June on Google. A prompt I liked is to share about the summer after you graduated high school.

This was in 2005. Man, can you believe it’s already been fourteen years? I remember finding these odd lists of things that mean you live in 2005, such as “You have lost touch with old friends simply because they don’t have an E-mail address”. E-mail is way outdated now. However, I think WordPress already existed, though I didn’t have an account. But I digress.

I graduated from high school on June 24, 2005. Two weeks prior, I had finished the assessment week at the country’s residential rehabilitation center for the blind and had been advised to attend their basic training program. It was expected that I couldn’t start until October.

However, in early August, I received a phone call telling me I could start on August 22. So that’s where I spent the last few weeks of the summer holiday and the rest of the year.

The summer of 2005 was also the summer I had a ton of health worries. Most of them were just health anxiety, but one of these scares did get me sent to a neurologist for suspected shunt malfunction. That was when I first learned about the possible impact of my hydrocephalus on my life. I never had a shunt malfunction *knock on wood*.

The summer of 2005, essentially, was the time I left my parental home and entered the care system. Even though I was supposed to get independence training, my father predicted I would never leave the care system. He was right, but so what?

Today, I had a meeting with the blindness agency which the rehabilitation center is part of to see if I can live with them. I won’t, because their living facilities are all over an hour’s drive from my husband. This meeting did remind me of how I entered the care system fourteen years ago with the aim of doing training for a year (at the center and an independence training home) and then leaving for Nijmegen to live completely independently. It didn’t work out. The disparity between this overly-normal, independent self, the one who is married now and doesn’t need help, and the multiply-disabled self, is still hard to deal with.

Summer Memories: Camping at Vlieland

Posted on by Astrid

A lot of thoughts have been floating through my mind that I’ve wanted to blog about, but I couldn’t motivate myself to actually write. I’m not even sure what about these thoughts I wanted to write, so instead, I looked up a writing prompt again. Over at Mama’s Losin’ It, one of the prompts for this week is to share your favorite summer memory. Here goes.

In the early 1990s, my parents would take my sister and me camping at a campsite called Stortemelk at Vlieland, one of the Dutch Wadden Islands. We would send our baggage there via a now no longer existent transportation company called Van Gend & Loos and ourselves travel there by train and ferry. Our parents didn’t have a car at the time. This made the journey all the more interesting, because we met lovely people on the train.

We would often meet the same people at the campsite, but also we’d make new friends each year. In 1993, when I was seven, I remember we collected shells and bird feathers and such and put them on exhibit near our tent.

In 1994, we went again and this year was the year we built a number of treehouses. I was eight at the time and my sister was six. I still had a little vision, so I was able to join in with the rough-and-tumble play of the other kids. I loved this vacation most.

After that year, we stopped going to Vlieland for several years. The reason was our move from Rotterdam to Apeldoorn, so our parents wanted to use the summers to get to know their new city. When we returned to Vlieland in 1998, it was a lot less fun. I was twelve by this time and too old for treehouses. I was also too blind. I could no longer find my way to the campsite store or anywhere on my own.

The last time we went to Vlieland was in 1999. I have very few memories of that trip. I liked going again but probably just because I was used to the routine. It was no longer fun.

Mama’s Losin’ It

#IWSG: What I Love to Read and Write

Posted on by Astrid

It’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) post. I forgot about it altogether until I saw another blogger post their #IWSG post.

This past month, I’ve not been writing much. I published only nine blog posts here and overall haven’t been very active in writing on the Internet at all. I did try out several new writing apps, but none suited me. Maybe that’s because I’d still have to actually have something to write on.

This month’s optional question for the #IWSG post is about your favorite genre to read and write. The question is probably mostly geard towards fiction writers, but I don’t care. I’m going to answer it anyway.

With regards to reading, the genre I read most often is memoir. However, the genre I enjoy most reading is young adult, specifically novels about social issues. I rarely read fiction geared towards older adults, though I’ve come to read it some more recently. In general, the topics I most like to read about are legal and medical issues.

With respect to writing, well, I hardly write fiction anymore, if at all. I would love to try my hand at poetry again soon, but am finding it hard to know where to start. I mean, poetry when I was a teen used to be just a story with random line breaks inserted, but that’s not what it is.

My favorite genre to write in, hence, is memoir. On this blog, I most enjoy writing the personal reflections. Particularly though, the letters I’ve written to myself have been the most interesting to write. It’s sad that my personal reflections are not among the most popular posts on my blog.

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

Posted on by Astrid

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 Beautiful Memory: Clowns

Posted on by Astrid

It looks like, even though I’m still depressed, I’m getting a little bit of my writing mojo back. I have at least been commenting more on other people’s posts and feel like I want to write again. I was inspired to write this post by a question over at Pointless Overthinking. The question was about your most beautiful memory from last year. In 2018, my most beautiful memory was of saying goodbye at my old day activities. I already posted about that when it actually happened though. For this reason, I’m choosing another memory to share.

On November 23, 2017, my old day activities organized a “day out” for all clients. The reason it was called that was because they get money to take each client on an outing each year. This hadn’t happened in years though and, with many clients being profoundly and multiply disabled, it would’ve been hard. Instead of going out with those who could do this, the staff chose to have a “day in”. They organized for two clowns to visit the center.

I attended the group for profoundly and multiply disabled people at the time. I am not profoundly disabled, but I most enjoyed the sensory activities at that group. The clowns visited us and started interacting with the clients. None of the other clients can talk, but they thoroughly enjoyed it. So did I.

In addition to the clowns visiting, the staff had organized for a snack and fries delivery truck to come by. The clients at my group couldn’t make it clear what they wanted from the truck, so at first I too was just given a particular snack. When I discovered you were actually allowed to order your own snacks and fries, and as much as you wanted, I joined the people at the more able industrial group to fetch myself snacks. It was a ton of fun.

I was reminded of this day a few weeks ago, when a staff’s ddaughter visited us practising as a clown. She was in the process of auditioning to become a hospital clown and wanted some practice. She was really good. Unfortunately, she didn’t pass the auditions though.

A Timeline of My Mental Health

Posted on by Astrid

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.

#IWSG: Post-A2Z Ramblings

Posted on by Astrid
IWSG

And yay, it’s May! It’s time for the Insecure Writer’s Support Group (#IWSG) day again. As you may have noticed, I didn’t write for the past few days. As such, I didn’t finish the A to Z Challenge. I am still thinking of doing at least the letter Z post, for which I have a cool theme.

The reason I didn’t finish A to Z is that, on Saturday, when I was supposed to do the letter X post, I was off to my parents’ all day. I didn’t get home till past 11PM and, though I had my phone with me, I didn’t really have time to write at my parents’. That’s a good thing in a way, in that I didn’t feel the need to retreat. Usually I do feel that need, as I find conversing in general and with my parents in particular challenging. Now, not so.

I had a good visit with my parents. No hard questions. We did discuss my life a bit, but mostly it was about my premature birth and what has become of my treating neonatologist. I think I mentioned in my letter Q post that I wasn’t even sure he’s still alive. Well, he is, as he’s still a member of the Dutch Pediatric Society. I assume he no longer practises as a doctor though.

Then on Sunday, I felt just too tired to write. If it had been an easier letter I’d have to write on, I might’ve found the motivation to catch up that day, still giving me two days to complete my letter Y and Z posts. Well, it didn’t happen. Then on Monday, I spent the day at day activities and then was off to my in-laws. Yesterday, I started to write a different post, but got frustrated with my Mac and iPhone again, so I didn’t write then either.

My husband encourages me to finish the challenge late, so that at least I have some sense of succeeding rather than feel I failed the challenge yet again. I understand his point of view, but I have several other posts I want to write. So, we’ll see.