on needing help and it simply not being there

disclaimer 1: my disclaimers are a lot more casual than the rest of this post so maybe keep that in mind if you read it so that you aren’t startled when it gets dark

disclaimer 2: this is mostly not about trump, this is mostly about healthcare and resources in the US for disabled people even before trump’s inauguration. i am writing this because i want to explain why it is so vital in even one situation (mine) that things get better (lol, i know, they won’t, i fucking hate life right now) rather than worse. they must NOT repeal the ACA and the ADA, and there, now i only mention trump briefly one more time in this piece of writing.

disclaimer 3: i do know there are other issues that need to be addressed also – i don’t have the energy or expertise to write about them. if you do, feel free to link me to your writing, i will share it if i feel it is helpful for people to see after reading it.

disclaimer 4: trigger warnings for suicide, self harm, + rape mentions below

IF I END MY LIFE SOMETIME SOMEWHAT SOON, especially in the next four to eight years:

let it be known that i went to the ER three times since my last serious attempt on my life, which happened in february 2016, and which was preceded by another serious attempt on my life in january 2016, and that since that second post-suicide-attempt inpatient stay in february i went to the ER three (3) times presenting in need of immediate psychiatric hospitalization, and that each time i was sent home without so much as seeing a glance of a bed in a psych ward, let alone being assigned one of my own to sleep in for even a single night. one of those times i was decompensating, and the other two times i presented for suicidality and i told them i was going to kill myself and overdose if they sent me home (they were “willing to take that risk” and they sent me home, one time with a cab bill over $60 not including tip). i never thought, as a teenager, that i would long for the individually packaged saltines of the psych ward, the uncomfortable beds, and usually terrible roommates, and especially long for the feeling of security that comes with having had almost everything i could possibly use to hurt myself unavailable to me, to be surrounded by mental health professionals whose job is to keep their patients physically safe and as calm and okay as possible, among other things.

let it be known that before being discharged from the ER on one of those three occasions i was kept alone at almost all times for 36 continuous hours in a room with white walls so bare that they lacked even a single clock i could use to tell the passage of time, and that there was only loose paper, a pen and one pack of playing cards for entertainment (all three only offered upon request).

let it be known that the first time i was raped as an adult, it was by a man who met me as a patient in the psych ward he was a counselor in.

let it be known that i reported that man officially to another psychiatric counselor after it happened and that my rapist still worked there after i did that – i do not know if he currently works at my local hospital where i met him, i have not and would never go back to that ward, but i do know that he did still work there months after i reported him for raping me.

let it be known that i told a visiting nurse about a month ago that if she gave me access to all my meds again i would definitely kill myself with them and she replied “it’s not my job to worry about that” and walked out my door with my med box left unlocked and without calling crisis or 911 and alerting them to my state or to what i had just told her.

let it be known that i have been desperately trying to find a therapist since may 2016 and i have not successfully acquired even a single therapy appointment in that time.

let it be known that i am being provided with psychiatrist appointments that are only 15 minutes long and once every three months, which is not nearly enough in my current self-declared state of suicidality and other increasingly severe symptoms.

let it be known that the health care and welfare services i rely on as a person recognized as legally disabled by the US government are so minimal and underfunded that they are not adequate to treat me, that i cannot access the treatment i need, that i have been trying, and that many others who are also mentally ill or neurodivergent have access to even fewer resources. it is far from uncommon for people with mental illnesses end up in prison or homeless, or dead.

let it be known that i went out fighting daily, that i went out desperately fighting my mental illnesses and trying as hard as i could to live for as long as i could. that as i sit here and write this i have already been telling my constant intrusive thoughts for a very long time that i am not bad, i am enough, i am helping in the ways i am able, i do not take up too much space, i am not exclusively a burden, and that i should not end my own life or even harm my own body, some other things i do not believe too. i have been telling my brain again and again that it is wrong to think the things it does. telling it daily that i am capable of one day helping neurodivergent people in a significant way and that the world would not be “better if i was gone.” i take care of my cat xena, my legal emotional support animal, but i do not do a good job of feeding myself, or brushing my own teeth, or showering more than once every week or two, and that sleeping is a relief i rely on heavily because my brain usually stops trying to destroy me when i am asleep.

let it be known that i am so strong mentally, and so frantically determined to fight my symptoms and disorders, to claw my way out of the hell that lives in my own head, that attacks me in so many ways because of both genetic and environmental circumstances, and that yet i am determined to ultimately find happiness, though i do not really believe it is real for me to feel any more. i have already stayed alive for longer than i ever thought possible. i sit here, worried, but with ultimately no plan to overdose on my medications today or any day – but who knows, really. i have gone from okay to suicidal in under five minutes. this and other problems i am dealing with are largely due to the severity of my diagnoses that i have been actively seeking treatment for that i am not receiving.

let it be known, should i die by suicide or from any other medical problem before reaching an old age, especially if it is in the next several years, that while for transparency the US state and federal governments have admittedly helped me in some minor ways – they have provided me with a small income, subsidized housing, food stamps, and health insurance, but truly overall they have failed me as a struggling disabled person in more ways than i can possibly list, starting even far before donald trump became president of this country i live in, and that if government-funded health and disability services had not denied me access to so many resources and had not psychologically traumatized me so many times within the system, perhaps i would still feel capable of experiencing hope in my future again. perhaps i might have goals that i felt motivated about still, and quite possibly my life would hold worth to me. i know for a fact that i would not be writing this essay-thing if i had continuously received adequate care.

let it be known that if i do die young, i can say with certainty that i would not have and that i would still be a living person after that – probably not thriving, but alive – had i received adequate healthcare throughout my entire life… just please know that i was a fucking fighter, and i fought until the end, but that if i died young ultimately it was not enough in a system that obstructed my way every time and in every place i turned to look for help. i know things will only worsen for a low income disabled person like myself for a while now. and for so many others.

NOTE: This may read a little weird since it was originally a facebook post that I made. I decided I wanted it on this blog, too, so here we are.

xoxo,
Zélie

PS: One cool thing and piece of good news is that I got put back on an antidepressant again during my (15 minute) psychiatrist’s appointment recently.

why having an eating disorder is destroying my life

hey you guys.

I haven’t written in a little bit, as per usual. I really do wish I blogged super-regularly. Maybe that will never be my style, though, because despite my efforts to start blogging more regularly I never seem to be able to. I’ve been attempting to be the kind of blogger who posts frequently long-term for years now, and it is just not happening. Blogging is important enough to me that I blog at least a couple of times a year, and usually more frequently than that.

(This post could be incredibly triggering for some people, as it talks in detail about my experiences with eating disorders and other mental health issues)

I wanted to write a post today about my eating disorder. I know a lot of people who don’t have an eating disorder want one, and while I can understand that logic in today’s society, it is not ever worth it, believe me. If you actually develop one, it could ruin your life – I am kind of an expert on some of the ways in which they can ruin your life, having personally experienced them. Unless you treat it and/or recover from it, it will eat away at your life (although not possibly your body’s fat content – for 8 years I watched myself gain weight gradually even though I had a severe eating disorder) until there is nothing left. Until you are dead, and not even necessarily a thin corpse. Maybe that sounds like a totally sick and weird thing to mention to some people reading this, but it’s how some people’s eating disorders make them think – if I die, at least I’ll be thin when it happens. I know I’ve thought it.

I have a lot of mental health issues that I’m dealing with, and while my depression and other issues are by no means insignificant, my eating disorder is definitely one of the worst things I have to deal with. It is ruining my life, and it might even one day end it. I’m dealing with all kinds of problems that I never even considered would be issues when I first started binge-eating and making myself throw it up immediately after at age 12.

For eight years, I was a pretty clear-cut case: I had bulimia nervosa. That, without a doubt, was my eating disorder. I didn’t have binge-eating disorder, because almost every time I binge-ate that whole time, I would make myself throw it up after. I wasn’t anorexic, because I barely restricted for most of that time and I wasn’t underweight. I didn’t have EDNOS either, because I was obviously bulimic. I fit nicely and neatly into the category.

In late 2012, my bulimia, which had been an issue for years, was spiraling out of control. See, for years, I’d gone through short periods where I’d been b/ping (binging and purging) more frequently, and then I’d go back to just making myself throw up once a week or so, when I’d eat an entire tub of ice cream and throw it up (no, not the pint kind of tub, the even bigger kind of ice cream tub). Those were the times when my bulimia was less severe, and most of the time that was how I was, so I wasn’t too concerned about it. I knew to chew tums after  throwing up to neutralize the acid in my mouth. I was struggling in much bigger, more obvious ways, so it must not matter that much. Maybe I’ll address it one day, I thought to myself, but it wasn’t that bad now. Even when I started therapy, went on meds, and was in and out of psych hospitals starting at age 16, I would be open about how my depression was with professionals and some people but didn’t even mention my eating disorder to anyone. I think my mom sort of knew, but didn’t know I did it more than about once a year or something. Very, very occasionally she’d bring it up and tell me she was worried about the fact that it happened occasionally, and I’d tell her not to worry and that it wasn’t a “real problem”, and, well, I’d probably lie about how bad it was.

Anyways, late 2012. I wasn’t doing so well psychologically in general (let’s be real, when am I ever?), but it was obvious that my eating disorder was becoming a real problem, even to me. My bulimia was getting worse – I was more obsessive about calories and my body, and I was purging with increasing frequency. I started off just getting to how I’d been in my worse periods of life when it came to the bulimia. I was typically purging more than once a week. Things got exponentially worse, though, and pretty quickly I was at the point where I was throwing up literally everything with calories that I’d put into my mouth. I had recently moved out into my own apartment, where only my cat could judge me for these behaviors, while for my entire life before that I’d lived with multiple people. My bulimia had been something I’d had to do in secret, and while that was still the case, I was alone almost all of the time and I had plenty of time to myself to eat and throw it up whenever I wanted. Sometimes, if I was feeling full, even if I hadn’t eaten I’d make myself throw up, “just in case” (even I don’t understand that logic now. Thinking rationally isn’t always one of my strengths, to be honest).

I had a boyfriend at the time, and since social activities often involve consuming food, it became pretty obvious as things got worse and worse that I had an eating disorder. If I had never spent any time with anyone, staying in my apartment alone as much as possible, I probably could have successfully hidden my eating disorder even when the bulimia was really, really severe. It is possible that I could have hidden it from every single person ever at that point in my life, and that I could have continued getting worse and worse until one day I had a heart attack from the stress I was putting my body through, leaning over my toilet with my finger in the back of my throat, trying to get that last little bit of food up, and I would have died.

I ended up telling someone working with me for my mental health issues that I did, in fact, have an eating disorder, mostly because people around me were worried and wanted me to get help for it. I had never been diagnosed with any kind of eating disorder in the past, and the people working with me – therapists, psychiatrists, etc. – had never suspected it was actually an issue, as far as I know. The woman I told first was surprised, because I’d never mentioned it and she’d apparently never suspected it (not that I can blame her, I really was trying to hide it from everybody until then). She’d heard of a program for people with eating disorders, which was actually located in the town/city/place I was living in at the time, about a half hour walk away from my apartment. My insurance would cover it if I was diagnosed with an eating disorder, and she told me that former patients of hers who had gone there to treat their eating disorders had told her positive things about it.

I called them. I called the eating disorder treatment center, and I talked to some people who worked there, and they decided from a phone interview that I needed an evaluation. I went to a local hospital to get a ridiculous amount of blood tests (and a couple of urine tests) done, and then went to my evaluation. I was obviously then diagnosed with bulimia nervosa and was asked if I could start their partial hospitalization treatment program the next weekday, which happened to be tomorrow at that point. I semi-reluctantly agreed, and went there.

I attended almost every weekday (like I was supposed to), got the mandatory blood tests every monday, saw their nutritionist, was put on a meal plan, and oh boy, did I work really fucking hard to get better. I was exhausted every weekday after coming back to my apartment from the program, because I was putting myself through so much emotionally. It was worth it though. After one day early in treatment, when I’d thrown up in their bathroom after eating a meal there, which I couldn’t exactly hide from them when they were monitoring to see, among other things, if I was doing exactly that, they took me into an office for a one-on-one talk with a member of staff.

They told me that when that happened, when someone was doing so badly that they were throwing up even while at the treatment program and in their very building, they needed to be sent to inpatient care. The program was based in different locations, and while this one only offered a 3x weekly evening program and the 5x weekly longer partial program that I was in, they had a treatment center near Boston (on the other side of the state from me, I live in western Massachusetts) which offered inpatient care – basically, full time hospitalization. My insurance would cover it, and it was what I needed, apparently. However, it was definitely not what I wanted.

The partial program only lasted for about 5 hours 5x a week, and I was still exhausted from working on my eating disorder that much in the partial program. Not to mention, I would be being supervised constantly. The partial program included eating 2 of your 3 daily meals there, and one of your 3 daily snacks. Being supervised 24 hours a day would mean no getting away with purging, and no skipping meals, ever. Also, as a just-technically-overweight bulimic, I did not want to be around multiple severely anorexic girls 24 hours a day. They had the body I wanted so desperately, and I didn’t want to deal with that. I also didn’t want to be away from my mom, and my cat, and my boyfriend, and my friends, (and my computer….oops). I was extremely resistant to going inpatient, to say the least.

I bartered with the staff. I knew I’d made a mistake in throwing up there at the program, but at this point I had to prove I wasn’t sick enough that I needed to go, there was just no undoing what I’d done. I assured them it would never happen again, I’d never throw up in their bathrooms again. It wasn’t enough for them. In the end, they did let me stay at just the level of care that was the partial program, but on several conditions, which I met – I had to stop purging. I also had to bring in my scale the next day, so that I couldn’t weigh myself any more. Thirdly and finally, if it happened there again, I had to go inpatient, no question. Two strikes and I would be out of there and in some hospital in the Boston area for a while.

It was pretty good motivation to stop. I did purge a few more times in secret, but I started doing it a lot less. I needed to stay with my cat. I needed to keep my apartment, and what little life I had. I brought in my scale (they still have it locked in a closet, actually – I’ve used my mom’s scale every time since then that I’ve felt the need to weigh myself), and I threw myself into the therapeutic groups. I communicated to their nutritionist, and she worked with me to help me. It all really helped a lot. I’ve actually purged probably less than 10 times since that day, and it’s been well over a year now. I guess I conquered my bulimia nervosa.

I was doing well, and they transitioned me to their step-down program, the evening program, which was a sign I was doing well. I really was. I still dealt with the thoughts from my eating disorder, but they were decreasing in how much influence they had over me, and how frequently they were happening. I left the evening program after only a couple of weeks, though, because I was tired of being in treatment, and at that time I was doing well. They gave me a list of local nutritionists to contact, who had experience treating people with eating disorders, and told me to call them until I found someone who would take my insurance, since they didn’t know who would. For some people, that would be no problem, since most people can use phones just fine – but I have pretty severe anxiety, and phones are one of the things I personally find are most anxiety inducing for me. I never called one of the nutritionists to see if they’d take my insurance and set up an appointment if they did, because I was simply too anxious to do that.

Fast forward about six months from then – I’d been good with keeping up the not-purging, and eating somewhat normally, although I definitely wasn’t sticking to my meal plan any more. I was turning 21, and that meant I no longer qualified for several therapeutic services because of my age. My insurance was still going to cover therapy and psychiatrist’s appointments, but I was switching therapists. In fact, I was switching organizations. There are two big local organizations that handle a lot of mental health services around here, and I was switching from one to the other because the other one offered DBT (Dialectical Behavioral Therapy), a program I’d taken in my teens but never finished, which could be extremely helpful for me and had been recommended by a lot of people I was working with. I set up appointments with my new therapist at the other organization, who would refer me after a few sessions to see one of their organization’s psychiatrists, and I then terminated services with the other organization.

Being in their DBT program involved a few things I wasn’t used to – first of all, I had to go to my new therapist’s office to get my weekly therapy session, while the organization I’d been with previously had offered outreach therapy, where the therapist comes to your apartment or home, which is great when you have problems with anxiety and public transit, and, uh, just being in public where there are people. It’s also great for when you’re feeling too depressed to leave your home. Secondly, to get involved in the therapeutic once-a-week DBT group that was part of the program, I had to call to set up transportation, because it was located several towns over, and I had no car or way to get there regularly. My insurance would cover all the costs (yes, including the transportation), but…I had to call to set it up. I had to use a phone so that I could be in a taxi with a stranger for an hour every week to get to a group with people I didn’t know. DBT stopped working well for me pretty fast, even though I went into it hoping and expecting that it’d be a positive thing for me.

I actually never called to set up the transportation. I didn’t go to a single one of the groups. I attended two or three individual therapy sessions that I had to leave my home for, after having great difficulty setting up an appointment time for them with my therapist because, you guessed it, I had to call her to do that. I quit DBT pretty fast, and then I didn’t have a therapist. I didn’t have a psychiatrist, either, or any other mental health related services, actually. I did make several attempts over the next six months after that to set up therapy with the organization that offered outreach (“come straight to your home”) therapy, but I struggled with calling them at all, and whenever I worked up the courage to call someone they didn’t answer or respond to any messages I left, or they had no idea how to help me, other than by giving me a new phone number and name of a person I should call to set up therapy, which I would usually put off and cry over for another few weeks before I could proceed with the next phone call. Yeah, I know, my anxiety is really severe and somewhat pathetic to hear about, this is not news to me.

I ended up out of therapy, running low on meds, with no way to get prescribed more unless I set things up (which I was trying to do!), and generally doing terribly. Since this post is primarily about my eating disorder, you might be wondering why I was talking about all of this – well, as it turns out, being out of therapy and off meds isn’t so great for my eating disorder, as well as my other issues. I started eating less and less, partly due to depression, but largely because I was deliberately restricting my food and calorie intake to lose weight. I’m actually (finally, sort of) in therapy and getting help again, and I’m on meds now, but my eating disorder is still pretty bad. In a few months, I ended up losing 30lbs, with an almost entirely sedentary lifestyle. I wasn’t exercising, basically, I was just restricting my food intake, and I lost all that weight. I was eating between 0 and 500 calories a day, typically either 200-300 or 0 if I decided to completely fast that day. I stopped getting my period – this is called secondary amenorrhea, which has its own long list of potential super fun side effects including osteoporosis, lifelong infertility and messing up your hormones to the extent that you can literally start growing facial hair from the imbalance due to a complete lack of estrogen being produced by your body.

I’m eating slightly more now – usually between 500 and 1000 calories a day, because eating more literally just results in a lot of pain/discomfort and then involuntarily throwing up at this point – but even though I’m not longer eating so little that I feel weak whenever I exert myself physically at all, or sleeping 20+ hours a day because my brain just doesn’t have the energy (calories = energy) to keep me awake, I still have incredibly reduced brain functions (talking to me is sort of hilarious in a pathetic way right now because I take so long to think about things, and I forget what I’m talking about mid-sentence, as well as not being able to do things like basic math). I still get really tired when I am walking up a hill or carrying anything heavy. I’m still not back to getting my period. I’m still getting sick constantly because my immune system is so weak…..etc. The list goes on.

I’m reluctant to go back to the eating disorder treatment center – for one thing, it’s much further away now that I’ve moved to a different town, although it’s still the closest treatment center for eating disorders, it’d be difficult for me to go there regularly now, especially because the partial program starts pretty early in the morning. I am also, honestly, worried about being sent immediately to the inpatient program if I were to be evaluated. I still don’t want to go inpatient! I still have my cat! I still have something that resembles a life! I’m also worried about the amount of food I’d be required to eat on a daily basis due to their meal plans. I also know that if I don’t treat my eating disorder, despite having the World’s Slowest Metabolism these days (not really, but maybe), I could lose more weight. Even though I don’t have binge-eating disorder or bulimia nervosa currently, I still weigh too much to be classified as an anorexic, and so if I went into treatment my diagnosis would be EDNOS (Eating Disorder Not Otherwise Specified), which I don’t want. I certainly don’t want EDNED, which may be EDNOS’ new name in the DSM 5, according to an amazon review I read (I know, I know). Massachusetts hasn’t adapted to the DSM 5 yet due to financial reasons (according to my new therapist, at least), but if what I’ve read about the -NOS ending becoming -NED in the new edition is correct then I don’t want it to change while my diagnosis would technically be that. Like, seriously, EDNED? That is a terrible acronym name for a disorder of any kind and I am having no part in it.

I am, however, working on getting better. I already mentioned that I’ve increased my average daily calorie intake. While I don’t enjoy the actual process of getting my period, I’d rather start getting it again than start growing facial hair because of a lack of estrogen to balance out the small amount of natural testosterone in my body. I would like to stop getting sick all the time due to my immune system being so weak right now. I’d like to not see a totally distorted version of myself when I look in the mirror (I have no idea what I actually look like, thanks a lot eating disorder!). It’d be cool to eat like a normal person when I’m hanging out with friends. It’d really be cool to enjoy eating food again. There are a lot of reasons why I should recover from my eating disorder, and why I want to.

There are probably even more reasons why you shouldn’t develop an eating disorder if you don’t already have one. I’m really hoping that maybe at least one person who was trying to develop anorexia sees this and stops trying, or at least one person who has a less severe eating disorder than I do hears my account of why my life is sucking so much due to it lately and decides to get treatment before they get any worse. There are a lot of resources out there, including free helplines. There are websites and other resources that don’t involve calling anyone, if that scares you like it scares me, too. Please, this is gonna sound super corny, but it’s really really not worth it. If I could go tell 12-year-old Zélie not to purge that first time, not to accept those diet pills from her middle school friend, not to keep her worries about her body getting bigger (and like, frick, I was going through puberty then! It was normal!) to herself, to talk to an adult about them, I absolutely would. My eating disorder isn’t the only problem in my life, but it sure is one of them that I would love to not have to deal with. Even if I recover pretty much completely, I’ll never think about food/calories/my body in the normal way a lot of people can – I’ll have to fight, every day, although some days will be worse than others, to eat the amount my body needs and not hate myself for it. I will always have a chance of a relapse into bulimic or restricting behaviors. I know this because I’ve seen people who have recovered from an eating disorder, and while it’s definitely a better place to be than where I’m at right now, it’s still really hard. I can’t believe this even needs saying, but eating disorders are so beyond not worth it.

Thanks for reading,
xoxo,
Zelie