ARFID in the News

This is slightly old news. But there has been a story circulating about a teenage boy who lost his vision as a result of a restrictive diet. News outlets wrote hadlines like, “British Boy Goes Blind After Eating Only French Fries.” When I heard this on the news on my break at work, I instantly thought, this boy most have ARFID! And researching online, it turns out I was right. ARFID stands for Avoidant/Restrictive Food Intake Disorder. It’s also been called Selective Eating. In early childhood, it may be referred to as failure to thrive. It’s a lesser known eating disorder, but as demonstrated in this example, has significant health risks.  There are many articles about this young man that do mention ARFID, but you probably can’t count on your evening news to include it.

This CNN article makes a lot of excellent points. One researcher acknowledges that since this person had a “healhty” weight and BMI- doctors never suspected diet was the cause of the vision and hearing loss. Yet the article  never actually mentions ARFID or eating disorders. CNN also quotes an expert that views this as an “extreme example” and implies that discussing it at length is alarmist. Yes, I realize, blindness isn’t a common result of ARFID/selective eating. But this is still a serious eating disorder that folks should be informed of.

I shouldn’t be surprised. The media had been covering Anorexia and Bulimia since the 80s- and they still can’t do that right most of the time.The main reason the media coverage of this bothers me, is that a lot of people’s knee jerk reaction to the story is to view it as the moral decay of our society, “fast food nations”,  and attribute it to stupidity, laziness, western decadence…etc. If the person in the story was fat (he is not) people would be fat shaming him. Public comment sections are always a cesspool. But it isn’t always trolls. There are plenty of “normal people” who sound of about articles about ARFID or products made to accommodate people with ARFID or Autism…like plate dividers that keep food from touching. People harp on and on about “back in my day we ate what was on our plate or we starved!” And the problem is, yes! Many people with ARFID WILL restrict to the point of serious medical issues. Because they have a serious medical condition that requires medical intervention! People with ARFID are often mistaken for people with Anorexia Nervosa. And while there is still a lot of judgment put on people with any ED for “choosing” to starve, binge eat, or use compensatory behaviors, since disorders like Anorexia, Bulimia, and Binge Eating Disorder have been in the public consciousness for far longer, they don’t seem to get the same criticism as ARFID. 

And yes, poverty and food insecurity is a problem. But that doesn’t make ARFID less of a problem. And people form all socioeconomic backgrounds experience eating disorders. In some case, poverty and food insecurity causes or exacerbates eating disorders.  (I have been working on my review of  Not All Black Girls Know How to Eat by Stephanie Covington-Armstrong, which discusses this at length.) There is still a prevailing belief that people in wealthier countries get eating disorders because they have it “too good”, compared to those in developing nations. Poverty in the western certainly looks different in the west than in poorer countries. Illnesses like Type 2 Diabetes and heart disease have been called “disease of affluence” by people who fail to acknowledge that they are more common among in those living at or below the poverty line. And independent of a person’s weight or other health conditions, these people may struggle with eating disorders.

On this blog, I am open about my 12 year on and off struggle with Bulimia. Last year in treatment, I met someone with ARFID. In learning about his ED, I gained a little more insight into my own sensory issues I experience being on the autism spectrum. I struggle with urges to intentionally restrict my food intake as a coping mechanism. In the past, I struggled with restricting food intake as a means of controlling my weight. I have realized nowI also struggle with meal plan compliance, not just due to the “rush” that comes from restricting, but because my sensitivity to certain textures has created aversions to certain foods. While it’s still a problem in the “real world”- especially when food is prepared by others- it was extremely difficult in treatment, because food options in a general psych hospital are limited. ED programs encourage eating a variety, but if they don’t operate independently, they are limited by what the hospital makes available. 100% completion is the rule in treatment, and for good reason. But there were days when all of the main entrees were a sensory trigger, and on one occasion, I almost vomited at the table. I don’t believe myself to have ARFID. While sensory issues can exacerbate my disorder, I don’t believe my aversion to textures has been a cause of nutritional deficiencies, which typically occur when I’m in an active bulimia relapse. But it’s certainly something to be mindful of as I try to follow my meal plan and make a gradual shift towards intuitive eating.

Many folks with ARFID are also on the autism spectrum and/or have ADD/ADHD.

Thanks for coming to my Ted Talk!

(NEDA’s page about ARFID.)

Life Update

I went to the dentist (last month?) for the first time in 5-7 years. I was impressed that on some of the paperwork I filled out, they asked about history of eating disorders, but neither the dentist or hygienist asked me about it. The office gave me a referral to an oral surgeon, who can remove the impacted wisdom tooth I’ve ignored for a year or longer. Sadly, the earliest appointment is in September. I also have 7 cavities between teeth. And while my bulimia could have played a role, according to the hygienist, the more likely culprit is poor flossing and the 5-7 years I went without a cleaning. Even with my dental insurance, I can’t afford to get any of then filled now. And when I can, I’ll probably have to do it one at a time. I am just going to be honest and say, it’s true that I couldn’t afford dental insurance. But also, dental hygiene is something that really suffers as a result of my depression, anxiety, and executive dysfunction.

My outpatient dietitian is moving to a new office and that may complicate my insurance coverage. Last year, insurance covered all of our appointments. I am getting conflicting information from both her old office and my insurance company as to whether I owe for this year’s appointments thus far. She is still monitoring me occasionally in the Recovery Record app. I am still struggling with inconsistent hunger cues, meal prep, and planning. For a long time I’ve been in the place where my bulimia is in remission, but my eating is erratic and unstructured.

One of my former treatment centers has just closed, and this is where my bimonthly, ED support group was meeting. The therapist, the former executive director of the clinic, intends to continue the group as a free community services. But he needs to find us a new location.

Due to irregular menstrual bleeding, I’m concerned I may have cysts, fibroids, or hormonal imbalances. I am “obese”, I’ve had an eating disorder on and off for years, I have hypothyroid, and a have a family history of PCOS and uterine cancers. But for some reason, doctors always think my weight is the cause of missed or extra long periods. My last gynecologist, the one that told me Bulimia couldn’t affect my period, is out of the office until August. I have to wait until mid July to see someone else.

I have been applying to new jobs for several months now. Last Friday, I got really discouraged. I had two phone interviews scheduled, and a recruiter who arranged to speak with me. Both people, from completely different companies, did not call me as planned, and did not answer when I called them, or reply to my voice mails. The recruiter cancelled, but at least gave me about 15 minutes notice. My pattern is that everything happens at once, or absolutely nothing happens. I know some of these experiences are typical of the job hunt, but being stood up by 3 people in one day really made me feel that my time isn’t valuable.

I am feeling better about it now. I interviewed for a job I was excited about two or three weeks ago. It was for a job search website. They didn’t ask for a second interview, but informed me that they plan to come to a decision in a week or less. Based on that alone, I don’t think my odds are good. I interviewed for a lab tech position yesterday. And while I think the interview went well, and I learned a lot about working in a hospital, the commute would be too long, and I feel the job would be too fast paced and overwhelming for me. If they do offer me one, I probably won’t take it.

I want to leave my current job for one that pays $15/hour and has better health insurance benefits. My current, dead end job, finally scheduled me full time. I’ve been part time there for about four and a half years, and they were granting full time schedules to new employees the majority of that time. Despite my seniority, they told me I would have to work until close to get full time hours. (Close is midnight, downtown, and I don’t have a car). This was their response the first 2-3 times I asked. (And let me clarify, four and a half years is a long time at this company. They have an extremely high turnover rate.) I am now, FINALLY, scheduled 36 hours a week. And now I qualify for PTO, effective this week. And since I still have FMLA, I can call in for medical reasons, apply the PTO, and still be paid.

I guess what I’m afraid to say, is that I’m hesitant to leave my job before my oral surgery, and before I get to the bottom of my uterine issues.. But I’m afraid that my family and my job developer may not respect that. And I will always have health problems. I already put off job hunting to do eating disorder treatment, get my first thyroid ultra sounds and biopsy, and do a sleep study. There will ALWAYS be reasons to wait.  If it never ends, how do I move forward? But I also can’t put off heath concerns. My mom died in her 40s from a cancer that went undetected for years.

I still haven’t even been offered a new job, so I know I shouldn’t worry. I feel pressured to leave and find something new. But my standards are now a lot higher than when I first started the search. I am working with a job developer, and since it’s funded by the state, I am worried they may have a deadline for me that I’m not comfortable with.  It’s difficult to determine what I earn now, because I earn more at night and on weekends. I’m eligible for a 10-25 cent raise next month. After my 6 month review in July, this may put my base pay at $13/hour. I’m earning more than minimum wage, but it’s still not a living wage. Especially for someone with my health care expenses and my student loan debt. And keep in mind, the last four years at this job, I’ve only worked 20-28 hours a week. Significantly less when I was in treatment.

I have subsidized government healthcare because of my low income. If my income gets too high, I lose the coverage. In January of 2020, if I’m still full time at my job, I will qualify for their insurance, and that would also cause me to lose my government insurance. The insurance I would be offered through work, costs more and would cover less. Since the state is paying for me to get free career counseling and job coaching, it’s imperative to stay on top of the job hunt. But I wouldn’t mind staying at my current employer a few more months. I have 120 PTO hours I can use!

I am not leaving my current, dead end job for less than $14/hour, and decent benefits are a MUST. I don’t expect PTO right off the bat (if at all), and I know I’ll be losing FMLA. When I take a new job, I will free fall immediately into having to deal with my chronic health conditions while working 35-40 hours a week, and most likely Monday-Friday.

But I need better than what I have. I can’t move out on my current income. I can’t pay off my student loan debt, medical debt, or credit card debt on my current income. Even with dental insurance, I can’t afford to get my 7 cavities fixed on my current income. (And I can barely pay for the dental insurance.)

So I cannot settle. I don’t expect six figures. But I expect to be able to live without relying on family forever. I guess I’m one of those entitled millennials.

I realize now there is no reason to change my approach. Because even if I do everything I am supposed to: apply to many positions, promptly respond to phone calls and emails, and nail interviews, it could still take months to get a job. I have been learning a lot from my best friend, who now works as a recruiter. I am beginning to understand there are so many factors at play in hiring decisions that have little to do with the actual applicants.

Since I have FMLA and PTO at work, I feel like I should be utilizing this time to the best of my ability. I should be resolving health concerns, because a future employer will not allow frequent absences.  But as I mentioned, I have to wait on the oral surgeon and the gynecologist. I am putting off the dental work specifically because payment is due at time of service, and I cannot afford it. My support group is on hiatus. Maybe I should start going to individual therapy more periodically. But the sessions do little for me. The few I schedule, I actually dread going to. I can’t tell if I’m just impatient with my therapist, or if we aren’t a good fit. I’ve been seeing her 2 years, she’s the best therapist I ever had, but sometimes, she sort of goes on these tangents, and I don’t know if she fully understands or processes what I tell her. She has encouraged me in the past to try an outpatient DBT group. But I don’t know if I should be doing therapy for therapy’s sake. And with the other, constant headaches in scheduling with providers, I don’t want to start looking for a new therapist, or break off our current relationship.

The most significant cause of my stress and anxiety right now is just the degree to which I am overthinking. I need to work my shifts. Go to appointments. Continue applying and interviewing for jobs, follow my meal plan to the best of my ability, and try to keep my living space inhabitable. A possible use for all this PTO- especially since my time at this job is finite- might be taking time off to do some serious decluttering and deep cleaning.

Life Update

I have been working with the same dietitian for almost a year. I’ve attend every single meeting of my bi-monthly eating disorder support group. I recently started working with a job developer, which the state is thankfully funding. I might be taking a break from therapy. I typically go every other week, but sometimes in turns into every 3 or 4. I don’t feel like it’s doing much for me at this point, and I have other resources  to address my specific problems. I also scheduled my first dentist appointment in 5+ years. I am anticipating at least one cavity, one impacted wisdom tooth, and some enamel damage in the BEST CASE SCENARIO. It has been at least 5-7 years since I’ve seen a dentist, and about two of those years, I was actively bulimic.

I am probably about due for another thyroid ultrasound, but I am not in a position to dish out the $50 copay. The two I had done in 2018 were completed past my deductible. And I still haven’t paid off the biopsy that followed, or my 2018 inpatient and php hospitalizations. (It’s all gone to collections.) I am hoping I can delay this ultra sound until I have more income.

Being on vyvanse as a daytime alertness medicine has changed my life. My anxiety got a little worse at first, but I have adjusted. It does change my appetite however, and that’s probably the most significant factor holding back up from starting an intuitive eating program.

It’s been almost a solid year since I was discharged from Eating Disorder IOP. Which will soon mark a year since I have needed any type of formalized eating disorder or general mental health treatment (at the intensive outpatient, partial hospital, or inpatient level). There were times between 2014 and 2017 where I needed it but was either too stubborn to go, or didn’t have the resources. 2017-2018 became somewhat of a revolving door phase. But I actually am doing well enough that I haven’t had to consider it for almost a year.

Even though nothing significant has changed in my daily life, I am in the very early stages of a job search. And it’s uncomfortable to be on the “precipice” of the next stage of adulthood. Much of last year I was adjusting to not being in school, basically for the first time since preschool. And while school felt like my worth and identity, being out for the time was excellent for my health and healing process. All change is difficult. But right now, I am working on leaving the job I’ve been at 4 years and 4 months. Even though I’m underpaid and unsatisfied, this is a job where every day is the same, the procedures are clear, and I always know exactly what’s expected of me.

Since a job change could occur within a week or two (but hopefully no later than 3 months from now), I want to take advantage of the time I have now. I typically work 25-32 hours a week. I started part-time because I was in graduate school and remained part time after leaving due to multiple health issues and spoon shortage.  But they do hire new workers to be full-time, and after sometime to recuperate, I asked for more hours. Despite being employed by this company longer than four years, they refuse to schedule me full time unless I am willing to work until close. (Midnight). This is impractical, and unrealistic given my reliance on public transportation. And the pay is hardly worth it.

I am looking for a job where I will be working 35-40 hours. And I’m concerned I won’t have the time and energy I’m used to having for hobbies. Especially since two in particular, reading, jewerly making, and crafts, are things I can do while on the clock at my current job. I also hope to update this blog more regularly, get my living space in order, and several other things I don’t dare list because I don’t want to set my expectations too high.

I’ve spent the last year working on my health and recovery. I have scheduled regular appointments, gotten several tests. (Biopsies, ultrasounds, a sleep study.) And I want to continue to follow up with providers while they fit in my schedule. Like I mentioned, I don’t feel therapy is beneficial right now. But I am also concerned when I do need it, there won’t be time. I am worried I will have to quit my support group. I go because it’s less than three miles from where I currently work. My dietitian currently sees me on Saturdays, but I know she hopes to one day have Saturdays off.

At my current  job, I don’t work Thursdays or Fridays, unless I pick up someone else’s shift, and I rarely have to work on a Saturday. I enjoy that I get to work almost every Sunday, and most potential employers are not open Sundays. In a typical week, I have 1 or 2 business days to go to appointments, contact my insurance company, or conduct anything else that needs to be done during normal hours of operation. Frankly, I don’t understand how nuerotypical and/or able bodied people are able to accomplish their “personal business” around a Monday-Friday, 9-5 work schedule, much less how others with chronic illnesses do it. I feel like I need at least one business day a week to take care of things, but I am not crazy about a job where I would work every single Saturday.

I am also concerned about being isolated at a new job. There was time my current job was isolating, because I barely knew anyone, and my daily tasks involve talking to computers, not people. But today I know many coworkers, and the one I’m closest to has had a profound impact on my life. This partially because we frequently take our breaks at the same time, we would eat together, and she was extremely supportive of my recovery. I live a ways away from the majority of my friends and cannot drive. (This is also a barrier to employment.) And it will take months, possibly a few years, of saving to be able to move into the city.

Finding balance is a lifelong challenge. But this is nothing compared to when I was in graduate school, working, and trying to either shadow therapy groups or tutor English as a second language. If I had secured an internship and been able to finish my degree, I would have been trying to work at my current job, intern at a clinic, and take graduate level classes- without addressing any of my mental health concerns. And I doubt my hypothyroid and chronic fatigue would have been diagnosed and properly addressed. I kept going until I crashed and burned, and the choice to stay or go was taken from me. I didn’t get to leave with my dignity, I was kicked out.

Another thing I like about my current job is the lack of dress code. I can wear almost anything, dye my hair unnatural colors, and wear my facial piercings. The tips of my hair are currently green to match the dress I am wearing to my best friend’s wedding. As soon as I start interviewing, it will be a dark brown. I anticipate business casual wardrobe. A progressive employer may allow a stud in my nostril, and a smaller septum ring can be flipped up inside my nose. A clear or flesh colored retainer may work for my lip, but some fit weird, some looks conspicuous. And that’s a piercing that likes to close or shrink in a matter of hours.

Not having as much freedom of wardrobe is challenging in part due to the high cost and limited choice of plus size clothing, my body image issues, and my sensory sensitivities to certain fabrics. When I wear business casual, especially with natural hair colors, I think I look middle aged. (There is nothing wrong with looking your age, but I am still in my quarter life crisis. I am not ready for the midlife one!) Piercings and colorful hair help me feel at home in my body.

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On a happier note, my best friend is getting married tomorrow, and I will be heading to the rehearsal dinner shortly. I am in the wedding party!

There is a little bit of pressure on me (nothing compared to what the grooms and the wedding planners are experiencing), but I look forward to catching up with so many people. I am also, sincerely curious to to see how a bunch of young queer people and middle aged and elderly Catholic people will interact at this wedding. I of course, want it to go off without a hitch. But it sounds like a social experiment.

I am proud of the bachelor party I co-hosted last weekend. The co-planner provided the funds and the venue (her home). I came up with the theme (Halloween! My best friend’s favorite holiday), made a playlist of his favorites, chose the decorations, and came up with the activities. A good friend of mine who is amazing at what she does read tarot cards for everyone. And I created a custom version of Cards Against Humanity that pertain to my friend and his fiancee.

This is most of what’s new and chaotic in my daily life. I don’t know what is coming next.

Disfigured (2008): Unpacking The Racist Subplot

I’ve given a synopsis of the 2008 Independent film, Disfigured, which centers around the friendship between a fat woman and a woman with Anorexia who meet in a Fat Acceptance Group. I discussed how the film depicts both Fat Acceptance and Eating Disorders.  I also talked about the romantic subplot between the protagonist, Lydia, and a fat man named Bob .

There is a little more about Disfigured that needs to be unpacked, and none of it directly pertain to fatness or eating disorders. I may not be the right person to do it, but I will try my best.

Spoilers for Disfigured (2008). The MPAA did not rate this film. But it would likely receive an R for language and sexual content. Content warning for ableist slurs, racism, antisemitism, discussion of street harassment, and some discussion of eating disorders.

POC in Disfigured

There are a handful of women of color with minor speaking parts  during the scenes of the Fat Acceptance Group.  There were a few more WOC cast as extras, in both the Fat Acceptance Group at the beginning of the film and the Body Image Group at the end. (Those credited include Sonya Eddy as Pam, Juanita Guzman as Roxanne,  Mercedes Castro as Mercy, and Shant’e Reese as Shant’e. I would not know the name of any minor character in the film without looking them up on IMDB. None of their names area actually spoken in the film.) The main cast  (Diedra Edwards as Lydia, Staci Lawrence as Darcy, and  Ryan C. Benson as Bob) are white.

The person of color with the most lines and screen time in this movie is a skinny, black homeless man named Hilliard (Teebone Mitchell). He carries his belongings in a stroller full of plastic bags. He harasses Lydia three separate times when she walks on Venice Beach. On my first viewing of the film, I didn’t realize he was meant to be homeless until his last scene. But even in his first scene,  I wondered to myself why the director cast an older black man for this role, and not a 18-22 year old white frat boy. Or maybe a group of teenage boys. Skateboarders? I don’t know. Being body shamed by black men or homeless people has not been my experience as a fat woman. I work downtown, frequently take buses and walk the last of the distance to work. I encounter all  sorts of people, and I have experienced extremely different forms of harassment. Rather than being insulted for my size, it’s usually strangers complimenting my size in uncomfortable ways (“plump and juicy”), asking for my phone number (I gave someone the rejection hotline once), or saying “Hell, yeah, I like big women!” (Well, me too, sir, but I don’t go shouting it on the streets.) I realize my experiences may not be typical. But what I see in this film are multiple harmful stereotypes, rolled into one character.

The first time Hiliard is on screen, he shouts insults at Lydia and Bob, and ask them obscene questions about their sex lives. The third time Hilliard harasses Lydia, she confronts him. He insists he’s abiding by his first amendment right to free speech. And that solidifies for me, yes. This role should have been played by a white, 20-something, anti-SJW who hates special snowflakes. This is racism, and it’s a terrible stereotype of homeless people. There are assholes of all economic backgrounds. But the media only wants to show you homeless people who are rude, violent, and belligerent.

Lydia completely tears into Hilliard. This occurs shortly after an argument with Darcy, so she’s taking those issues out on him. She may be also taking out her break up with Bob on him. She likely, quite irritable, because she’s been restrictively eating at this point in the movie, if she’s eating anything at all.  (See Anorexia Lessons sub plot). She calls him “a smelly, broken down, homeless, drug addicted, alcoholic, stinky, scabby…human disaster area” who “lives on a cardboard box.” And I can’t help thinking. Okay. True, he’s a jerk. But at the end of the day, Lydia can go home to her small but cozy apartment. She is the one with privilege here. She is clearly hurt by his words. But would these things have have come out of her mouth if she wasn’t prejudiced towards the homeless or people of color? And why demonize people with addictions? These scenes are evidence that writer/director Glen Gers had some prejudices to work through.

The next day, Lydia is stretching on the side of the road, when Marcus a, white homeless man  approaches her. He tells her “Hilliard…the man that used to yell at you” died. The cause of death is not explained. “He just woke up dead.”

“He was an asshole,” Lydia says. Marcus agrees, then says that he’s taking up a collection to have a memorial service for him. Lydia makes a contribution. And that concludes this subplot.

Lydia doesn’t appear to grow or change at all from this experience. Obviously, people of color, homeless people, and people struggling with addiction and/or mental illness shouldn’t be props in movies simply for the protagonists to learn a lesson or have a personal epiphany. But I was definitely expecting something transformative to come of this. This is another extra subplot the film didn’t need, and the screen time could have given to Darcy, Darcy and Lydia’s relationship, or even the Fat Acceptance Group.

In the audio commentary, Gers explained a “more well-known actor” was originally cast to play Hilliard, but backed out due to a scheduling conflict. (Gers does not name the actor.) Teebone Mitchell was hired the day before shooting. All of his scenes were filmed in one day. He was directed to shout at Diedra Edwards for several hours straight on Venice Beach. According to Gers, onlookers realized there was a film in production, but didn’t realize Mitchell was a part of if it. Bystanders kept asking the cast and crew to get him off the set. They thought he was an actual homeless man harassing Edwards, and that the crew was just standing idly by. I feel like these events alone should have caused the cast and crew to pause and reconsider these scenes. But at the same time, I don’t want to promote taking work away from lesser known actors, especially POC.  This film came out more than a decade ago. It is entirely possibly that today, or in years pirors,Glenn Gers would look at this scene and realize it wasn’t right.

Ableism

Darcy has trouble socializing and making friends. Her eating disorder has lead to isolation. At one point in the film, she refers to herself as “socially retarded.” I don’t care for the slur. But as a person with autism, I could relate to Darcy’s awkwardness, and occasional missteps, in trying to connect with Lydia. My personal head canon is that Darcy is a asexual, lesbian woman on the autism spectrum. *But Gers doesn’t get credit for the representation, because these are just my fan theories.) Autism is not an intellectual disability. And that is what we say instead of the “R word.” If we are talking about someone with a disability formerly associated with that word, ther term is “Intellectual disability”.)

In the opening scene, when Carol and Pam are telling Darcy she doesn’t belong in their Fat Acceptance group, a woman named Gwen chimes in. She repeats “This is a fat….acceptance….group.” And she does so in a tone people unfortunately use when they are speaking to someone who they perceive has having an intellectual disability.

When Bob and Lydia are arguing about Bob’s decision to undergo gastric bypass, he describes the surgery as his “crutch.” He tells Lydia “weak” and needs his “crutch.” He asks, “What would you think of a crippled man who doesn’t use his crutch?”

First and foremost, “Crippled” is a term some disabled people are reclaiming. But it’s better that able bodied people leave it alone. Additionally, comparing an yaccessibility aid (such as an actual crutch for walking), to a metaphorical crutch, is pretty damn ableist. Relying on something like a crutch, a wheelchair, a ramp, elevator, medication, stim toy, etc. is not a sign of weakness. 

I am also not crazy about this film’s title, “Disfigured.”

Antisemitism 

In the opening scene, Gwen also states, that fat people not feeling welcome at the gym is like saying “the Jews didn’t feel welcome at the Nuremberg rally”

I don’t expect every movie to be 100 percent politically correct all of the time. But we don’t need to be using slurs like the r-word. Disfigured was a film created to challenge the status quo and address social issues, not reinforce oppressive systems. 

NEDA Week: Life Update

I am frustrated that the only post I’ve finished thus far for NEDA Week was the book list.

Two weeks ago, I thought a family member had a minor stroke. They had been caring for their partner around the clock, and wound up putting themselves in the hospital. It wound up being issues with stress, migraines, and blood pressure. But it was terrifying, because I’ve lost important people before.

Last week, I had to skip 2 doses of my thyroid medication because of mix up with the mail order. Since going on the medicine almost a year ago, I’ve never missed a dose. And by the end of the second day, I was genuinely crying over thyroid related memes.

This week has been particularly chaotic. My wallet got stolen, and with it, my ID, bus card, and debit card. The person who took it, most likely an opportunist , emptied and over-drafted my bank account by purchasing as many things as they possibly could before fraud detection caught on. It might take two weeks to get any of my money back, so I am broke until my next paycheck. But my friends and some of my family have been immensely supportive of me these last few days, checking in with me, treating me to dinner, driving me to the bank or on other errands. Sadly, I’m missing a free eating disorder support group I wanted to check out today. One of the building downtown is being lit up blue and green for NEDA week. I wanted to take photos under the lights in some of my fat positive t-shirts, but that didn’t work out either. But hopefully tomorrow, I will get to go hiking with a new Fat Positive hiking group that’s just been established in my county!

Back in January, I had to get a biopsy of one of the nodules on my thyroid. The results show no signs of cancer. This week, for complicated reasons, I had to start a new daytime alertness medication and I am adjusting to this. (I was on metylphenid, generic concerta, now I’m on Vyvanse.)

I am continuing to work with my therapist and dietitian, when I’m able to get to their offices. I have also been attending the free eating disorder support group. It’s been a mixed bag so far. There have been three sessions and each one drew completly different groups of people. I feel like I am doing better than the other members, but recognize I am still in recovery, and as long as the group serves me, I will go. The other group I was hoping to check out today is run by a different clinic. After today, it  will be $30/session. Where I am at now, I don’t want to pay when there’s a free one bimonthly.

Where my eating disorder is now, I am not purging and I am not restricting on purpose. Being so low energy all the time due to the chronic fatigue/hypersomnia, anxiety, and depression makes cooking meals a chore, so I eat a lot of convenience foods, and eat less during the day and overcompensate in the evening. I have periodic breaks at work so I eat frequently on work days. On my off days, I have a tendency to get wrapped in what I’m doing and have difficulty tearing myself away to eat or make food. My sensory issues have turned me into a really picky eater and my dietitian and I are working gradually on this. I get more consistent hunger cues. I’m still not ready for intuitive eating. My eating is definitely still disordered. This is recovery. But I’m in bulimia remission.

I am still working a dead end job. My four year anniversary there has passed. I’m looking at career development services the state is willing to fund, because of my autism diagnosis.  Sadly the agency and I have been playing phone tag all week.

Going back to school is not an option for me right now. I have considered looking into seeing if a state university would hypothetically let me finish the master’s degree I started. I have no idea if graduate schools ever accept students that were dismissed from other graduate schools. It didn’t seem worth the effort when I was ill. Financially, there’s still no way I could pay off my debt to the private university to get my transcripts to transfer. But it’s worth researching for the future.

I am hoping to do more blogs about my eating disorder and mental health history, as well as my experiences in treatment, because it’s something I am open about.

I will continue to talk about YA Novels, and hopefully begin discussing tv shows and movies soon.

I hoped looking through Amazon Kindle, I would find more diverse books. But even when it comes to self-published titles, most books about eating disorders are written by white cis-women with Anorexia.

Media-related topics I intend to cover:

  • Not Otherwise Specified by Hannah Moskowitz
  • Wintergirls by Laurie Halse Anderson
  • Purge by Sarah Darer Littman
  • Paperweight by Meg Haston
  • Perfected by Ellen Hopkins
  • Identical by Ellen Hopins
  • An episode by episode recap of the AMC drama, “Dietland”
  • An episode by episode recap of the FX Comedy, “Starved”
  • There are at least five different topics related to “To the Bone” I want to address eventually.

A Graduate School Flunk Out: One Year Later

One year ago today, I was dismissed from graduate school.

I had been studying clinic mental health counseling for three years.  I intended to take the National Counselor Exam when I graduated, and obtain a Licensed Professional Counselor In-Training license. I was uncertain if counseling would be a suitable professional for me, but felt having the master’s degree would lead to a fulfilling career.

At this point in my life, going to graduate school is the biggest mistake I have ever made. And I will both literally, and possibly figuratively, be paying for it the rest of my life. I attribute my poor performance to my mental health issues, and some of the challenges I face being on the autism spectrum.

It’s difficult to say what kind of student I truly am. I was diagnosed with a learning disability as a child, and I always struggled with math. In middle school, I began to struggle in other subjects, likely as a result of bullying and depression. In high school, along with depression, suicidal idealization and self-harm came by eating disorder. My failures in school came down to far more than apathy and indifference. My mind and body were not receiving the nourishment they needed to preform. I finallly got treatment my senior year, improved my GPA a little bit, and somehow managed to get into a four year university.

With the exception of the two math classes I had to take, I excelled my first two and a half years of college. During my junior year, my anxiety reached a new high and some of my grades began to suffer.  I never outright failed an undergraduate class, but some courses I received the lowest “acceptable” grade. My senior year I applied and was accepted to my graduate program of choice at the same university. One might expect I was hopeful about the future, but I felt quite the opposite. I was let go from  my campus job, and voluntarily checked into a psychiatric hospital the week before finals for suicidal ideation. I spent five days inpatient and came out feeling about the same as before. I took my final exams, graduated, and moved. I began graduate school and an intensive outpatient program less than week later. The only break I had between undergrad and grad school was essentially, a long weekend.

At the end of the first semester, I received a BC in my Career Counseling class. That is the minimum grade I could receive and still obtain credit. One semester in, and I was already on academic probation. I considered dropping out, but felt nothing awaited me but retail, food service, and call center jobs if I left school. For some reason, taking a break did not occur to me. I forged ahead, my academic performance improved, and the probation was lifted. But I still suffered terrible anxiety, punctuated by periods of depression, and fixation on death and suicide.

I felt inferior to my peers, both for being on academic probation, and for never having had a “real job” before. When I’d taken the career counseling class, I was surrounded by people who had come back to school after working as lawyers, real estate agents, and various other professions. The only person who hadn’t, was an undergraduate classmate of mine, and she was a young stay at home mom. I was simultaneously feeling bad for not having a career, and fearing I would never have a career  without a master’s degree. I never realized how unfair to myself  that line of thinking was.  I also felt self-consciousness because I was one of the youngest, if not THE youngest, person in the program. And looking back, I realize that likely had no effect on what my peers thought of me.

I began to have more significant problems when the time came to find an internship . Interviews are absolutely brutal for me. This pertains both to my anxiety and my difficulty understanding nonverbal communication. There was only one instance where I felt the initial interview went well, and I was asked to return. The follow up was a 15 minute conversation that went poorly.

There were other complications at other clinics and agencies. At one hospital, supervisors wanted interns to wait until fall to begin, even though our university requires us to begin in summer. And there is one site in particular where I faced some genuine ableism and discrimination. The interviewer criticized my pattern of speech during the interview. Afterward, she contacted the internship coordinator at my school to tell them I had an “unaddressed mental illness” and she would have liked to be warned that the university had sent me. Technically, she was right, even thought it was my autism traits she seemed to be responding to. And while I can treat my depression and my anxiety, practice my interviewing, and sharpen certain  interpersonal skills, I can’t rid myself of the autism. Even if she was correct, calling the school and singling me out for being mentally ill was inappropriate.  I was humiliated and shaken, and I let it consume what little confidence I had. The deadline to find placement was coming up quickly, and I had no offers. I decided to suspend my search for the time being. Because of the classes that must be taken alongside the internship, my university only allowed students to start internships, beginning each summer semester. This meant I had to wait a year, and it would delay my graduation.

These feelings of inadequacy contributed greatly to my eating disorder relapse, which caused me to suspend my internship a second time. This time, I tried to disclosing my autism diagnosis in an interview. The agency  later told my school that they were concerned about my ability to autonomous. They didn’t offer me a placement, but they let me shadow groups. They gave me an opportunity to learn while receiving NO benefits themselves, and for that I will always be grateful.

I took a medical incomplete for the semester of Spring 2016, and sought outpatient and partial day treatment. I didn’t enroll in any summer classes. This was the first time since undergrad I had taken a semester off. In fall, I enrolled in one class, continued working part time, and shadowed therapy groups. I relapsed again, but insisted I couldn’t lose any more time to eating disorder treatment. The work for my incomplete Spring classes were due within a week or two of my fall class. I received a C and a CD in my spring classes, which resulted in academic probation. I received a BC in my fall class, which was grounds for dismissal. Even though the grades were submitted within weeks of each other, this was considered two semesters of poor academic performance, and I was permanently dismissed from the university.

The letter came the day before Christmas Eve. I wasn’t ready to tell my family yet. So I faked my way through the holidays. There were some people I didn’t tell until February, after I made my appeal for reinstatement, which was also rejected.

I don’t think most agencies know how to respond to an applicant that presents with traits of autism spectrum disorder. Myschool didn’t seem to know how to help me, although my advisor, the internship coordinator, and the department chair tired. People are always telling me having a history of mental illness or a disability will help you relate to your clients. But agencies don’t want you if any of it is visible. You must mask and present as completely nuerotypical. When the problem was my autism, my school was required to help me. But when my academic performance suffered, they were able to wash their hands of me and focus on more promising students. It may not be the truth, but that is certainly how I feel.

I was only three classes and an internship away from graduating. I appealed for readmission on the grounds that I was mentally and physically ill as a result of my eating disorder. My therapist wrote a letter as well. We both asserted that once I was healthy, I would be able to meet the university’s expectations. They responded that the decision was final.

I have had a year to reflect on all of this. I’m aware of my mistakes. I own up to them, but I am not going to discuss them any further today, because I have a right to be angry. I am angry that I live in a society that holds higher education at a high ransom, and I’m angry that academia punishes people who are mentally, and otherwise chronically ill. Worst of all, it was a clinical mental heath program that I was dismissed from. In September of 2016, a student in our program died by suicide. She was working as a counselor at the time. I don’t want to use the death of my classmate to forward a personal agenda. And I am not implying in anyway my university played a role in her death. But I can’t help thinking about her death in  relation to my struggles as a student with  mental illness

During this last year, I committed to recovery, and starting to feel okay for the first time in years. Not good. Not great. But okay.

Hospital Bans in Inpatient and Residential Treatment

This last summer, The Mighty, published an article in which Kesha Opens Up About a Common Frustration of Hospitalization in Rainbow Documentary. 

“In a new documentary about her 2017 comeback album, “Rainbow,” Kesha shares the process behind her latest music. In the film, she talks about being in recovery for an eating disorder and opens up about a common frustration of hospitalization — what she wasn’t allowed to bring with her.

In a preview clip, the “Praying” singer shares that while in a rehab facility, she wasn’t allowed to have a keyboard. She was told she couldn’t work, and that included access to a keyboard…Kesha’s experience of not having access to a keyboard, arguably an important protective factor in her recovery, highlights a common issue for those who are hospitalized. While there are some standard restricted items such as strings and electronics, every hospital has different rules about what patients can and cannot bring with them. Del Amo Hospital in Los Angeles, for example, doesn’t allow stuffed animals, musical instruments or flowers. At Houston Behavioral Healthcare Hospital, stuffed animals, hoodie sweatshirts and clothing with “offensive messaging” are prohibited. Walden Psychiatric Care‘s inpatient program in Massachusetts doesn’t allow knitting needles/crochet hooks/yarn, musical instruments or make-up. At many in-patient programs, restrictions prohibit patients from having items that can provide comfort. ‘

First and foremost, props to Kesha for speaking openly about her mental illness, treatment, and recovery. I look forward to seeing the documentary. It’s been out for awhile, and I still have not gotten around to watching it.
I have mixed feelings about this topic. And before I go ahead with that, content warning for eating disorders, self-harm, and suicide. I am going to be discussing my inpatient hospital stays.
This particular article discusses how Kesha, and other people in both inpatient and residential eating disorder programs have a lot of their belongings taken from them. This is true, and it can range from being mildly inconvenienced, to having objects of comfort or healthy coping skills taken away. But the article doesn’t explain the reasoning behind this. Usually, if someone isn’t allowed to have something with strings (string for crafts, jewelry, headphones, other electronics, or anything with cords), sharps (knitting needles or crochet hooks), or communication devices, it’s related both to safety and privacy . Even in facilities that exclusively treat eating disorders, these items may still be banned, as they pose a risk to patients who self-harm or are suicidal. Clinics don’t take these items just to be mean.
While treatment is difficult, and it can be hard to be away from home and without familiar objects, if you are *voluntarily* admitted to type of mental health treatment program, especially a residential one, you are fortunate.  In the United States, you are privileged if you have health insurance. You are privileged if the insurance covers any form of mental health treatment, or if you have parents other relatives who can cover the costs. Finally, you are privileged if you are able leave or take time off from your job in order to pursue higher levels of care. I was able to take an unpaid Family/Medical Leave of Absence for my treatment last spring. The leave covered my week long inpatient stay, and the shifts I missed during partial and intensive outpatient. I was discharged from IOP in May, but I am still in a precarious financial situation. Debt collectors call me multiple times a day.  Insurance covered 90% of my hospital stay, but I still owe about 8%, which has since gone to collections. Additionally, working fewer hours meant less income, and I am behind on the rest of my bills. I prioritize groceries, health insurance, and transportation costs. Everything else has fallen to the wayside. I am fortunate enough to have a stable living arrangement. People less fortunate than me may face homelessness and food insecurity. I’ve heard of middle class families having to take out second mortgages on their homes to pay for treatment.
I was so lucky to be in treatment, not being able to have all of belongings with me is relatively minor. But I also understand the feeling of being confined in such a sterile, controlled environment surrounded by strangers, and feeling as if you don’t anything to comfort or ground yourself. I’ve been inpatient on a general psych unit twice, once in 2014 and 2018. During the most recent stay, I was eventually moved to an eating disorder unit.
On the general psych unit, they locked up my stuffed animal, my sequin pillow, my slippers- which also had sequins (the nurses were concerned someone would sneak into my room and eat them?), my chew necklace, some slime (another stim toy), my earplugs (there was a woman down the hall from me my first day that shouted constantly), and obviously, all electronics.  Any toiletries containing even trace amounts of alcohol or swapped out for the hospital’s non-alcoholic alternatives. I had makeup that was kept behind the nurse’s station that I could “check out”, like a library book, then return when finished each day. But the hospital was so understaffed and busy, I didn’t feel like bothering them. (My first night on the unit,  I started wheezing  and asked for my asthma inhaler, and since the nurse was changing shifts THEY MADE ME WAIT FOR IT. ) Strings are cut from pants, sweatshirts, and other articles of clothing.  I had things to occupy me like my books and coloring books. I am on the autism spectrum and I’m used to having a piece of chewelry to stim with. I felt naked without my necklace, which had a safety clasp to prevent choking. Fidget spinners are banned explicitly from this particular hospital. While they were a passing fad to many, some people with autism, anxiety, ADHD, and other conditions rely on then. Thankfully, I was allowed to keep my fidget cube. The only phones available for patient use were payphones, that while free to use, were difficult to dial. They were located in the main hallway of the hospital, and afforded no privacy. Another patient relayed to me they were not allowed to have their teddy bear, and another was not permitted to have their sketch book.
My phone and my stuffed animal sloth were the items I missed the most on the general unit. It may seem juvenile, but it was difficult to be on that unit without my sloth.  My first stay in that hospital, I was allowed to keep my stuffed alpaca as long as I kept it in my room. This second time, it was locked up with my phone, keys, and wallet I’m guessing they are not permitted there because people could smuggle drugs inside them.
Looking back a the article from The Mighty:

“At many in-patient programs, restrictions prohibit patients from having items that can provide comfort. Mighty community member Morgan M. shared in the piece, 13 Gift Ideas for a Friend Who’s in the Psychiatric Hospital, that a stuffed animal — which is not allowed at many treatment facilities — was important to her during a hospitalization”

The general psych unit I was on housed patients with substance abuse issues. But I was surprised to learn that stuffed animals are banned at some eating disorder-specific facilities, as well.  I sent one in a care package to a friend staying at this really high end, residential facility out of state. It was one of the Eating Recovery Centers, which from the websites, look more like 5 star hotels than hospitals.  And even though they let her have sharps, strings, and cigarettes, they didn’t let her have the small stuffed panda we sent her. Were they afraid we sewed a bunch of diet pills into it?
For me, the hardest part of being on the general psych unit was that since the eating disorder unit was full, and I was admitted specifically for suicidal thoughts, they offered no eating disorder related interventions my first 3 and a half days. I was able to freely use behaviors and received no support at meals. My nurse offered to lock me out of room, so I couldn’t purge in the bathroom, but I declined because I wanted to be able to come and go freely. There was constant commotion on the unit, and I needed a place to retreat at a moment’s notice.
My first inpatient stay in 2014, the unit was less crowed. Therefore, more staff was available, and fewer conflicts took place. Patients, for the most part, got along. I witnessed one disagreement between patients that escalated to the point of being physical. Later, during a Gratitude activity, both parties made heartfelt apologies and peace was restored. During my second stay in 2018, I witnessed multiple fights ranging from screaming and throwing things to hand to hand combat, usually during meals. The worst of it occurred when another patient saw Ryan Secrest on TV, and began to scream homophobic slurs. A gay or bisexual man heard him, and started to fight him. I will always remember that during that scuffle, I watched an older woman with a trauma history triggered by this fight and begin to disassociate. Since the the staff were all focused on breaking up the fight, or completing other tasks, the youngest patient on the unit, an 18-year-old fresh out of high school, was the one grounding and comforting the woman in distress. While it was a moment that restored my faith in the humanity, it clearly demonstrates the hospital is poorly equipped to care for it’s more vulnerable patients. I don’t understand how anyone with a history of trauma could expect to heal in that environment.
After 3 and half days, I was moved the eating disorder unit for the reminder of the stay. I got all of my possessions back, except the slime and necklace. A nurse tech on this unit took my fidget cube away when I arrived. This was more of an  but one of the therapist’s was able to get it back to me. I was able to have my phone for a few hours at night, as long as I didn’t use it outside my room. I was even allowed to use string and scissors to make bracelets, as long as the supplies remained in common areas, and was locked up behind the nurse’s station when not in use.
The eating disorder unit was cleaner, quieter, and felt safer than the general psych unit. There was a much higher staff to patient ratio. Patients on the eating disorder unit of this particular hospital get better treatment by far. And this is something I will discuss in depth another day. I joke with my friends that being on a general psychiatric unit is like the first five seasons of Orange is the New Black. It’s not as bad as actually being in prison, but it’s still a lot like prison. The eating disorder unit is like going to a nice summer camp.
I am inclined to believe the clinic where Kesha was treated resembled the Eating Recovery Center more than the general psych unit I was on.
(Some photos of ERC locations I stole off their website.)
This is a post retrieved and updated from my former blog, AwakentheManicPixie.