Eating Disorders and the Transgender Community

With the recent political focus on transgender rights, as well as it being National Eating Disorders Awareness Week, I thought it important to highlight that past research has indicated transgender people may have a higher risk of eating disorders than any of their peers.

In 2015, the Journal of Adolescent Health, determined that “rates of past-year [self-reported eating disorder] diagnosis and past-month use of diet pills and vomiting or laxatives were highest among transgender students.”(1) More specifically, “[a]bout 16 percent of trans respondents reported that they had been diagnosed with an eating disorder in the past year.” That’s five times more than the next highest group which was “men who were unsure of their sexuality, who reported rates at 3.66 percent.”(2)

This is an alarming study in and of itself, but there are two things that have really stuck with me since. Firstly, the study was done via a survey of 289,024 students across some 200 university campuses. So while this is just a small sample size, one must also take into account that there may have been even more students than reported who a) were, in fact, struggling with an eating disorder but hadn’t been “diagnosed” and/or b) did not want to divulge that he/she/they had been diagnosed.

The second is that this survey was done two years ago. Rendering such an alarming result I would have hoped other studies would have popped up in my research, but any article I found only referred to the aforementioned survey in the Journal of Adolescent Health. I could not find any other study. And with eating disorders at such a high occurrence rate ("The National Association of Anorexia Nervosa and Associated Disorders states that approximately eight million people in the U.S. have anorexia nervosa, bulimia, and related eating disorders."(3)), more research is absolutely vital in understanding these mental illnesses (yes, eating disorders are a mental illness), especially within the transgender community.

Now, I am cisgender, so I cannot—and will not—speak to this personally. I do feel, however, that every single person’s story and his/her/their experience with an eating disorder is vital for so many reasons. One being a stark indication of how much more attention and research must be given to eating disorders and, two, the more voices we have, the more people can start to understand that eating disorders affect everyone regardless of their race, gender, sexual orientation, body size, age, etc.

Now, a number of articles I read surmised possible reasons transgender people struggle with eating disorders. I’m not going to do that because I, of course, don’t know. And, also, because I do know—first hand—how individualistic eating disorders actually are. The reason(s) for one transgender person who struggles can be completely different from another, and it is not ‘always’ or ‘automatically’ related to being trans.

Dan Maldonaldo, who works at T-FFED (Trans Folx Fighting Eating Disorders), cautioned against lumping trans folx into these growing ‘theories’, “I think when we report eating disorders in our community to medical professionals, a lot of times there's this arrogance or conflation of gender dysphoria with body dysmorphia." Dan says. "People think that once you're able to transition that your eating disorder will disappear. This is not the case. There's a lot of reasons why eating disorders are prevalent in the transgender community, but it doesn't necessarily have to do with the fact that we are trans and we have bodily issues that have to do with our gender."(4)

In short, this is an extremely important topic which must be explored and researched further. And, specifically, one to which we all need to listen. Eating disorders affect everyone in so many different ways and for so many different reasons, we need to give everyone's story a place in which it can be told. 

Eating While Transgender by Jamey Hampton

Finding Me: Looking Past the Surface to Discover My Transgender Identity by Ryan Sallan

(My blog is, by no means, a hotbed of internet traffic, but if you would like to add your voice/story to this, please don’t hesitate to email me. Additionally, I encourage you to check out Trans Folx Fighting Eating Disorders for further resources, information, and support.) 

<3
s.e.c

 

  1. "Gender Identity, Sexual Orientation, and Eating-Related Pathology in a National Sample of College Students". Diemer, Elizabeth W. et al. Journal of Adolescent Health, Volume 57, Issue 2, 144 - 149.
  2. Ford, Zack. “Eating Disorders Significantly More Prevalent Among Transgender People, Study Finds”. ThinkProgress, ThinkProgress. 4 Aug 2015.  Web. 28 Feb 2016.
  3. "Statistics: How Many People Have Eating Disorders?" ANRED, 2 Mar 2016. https://www.anred.com/stats.html
  4. McNeilly, Claudia. “Trans Youth Are Significantly More Likely to Have an Eating Disorder”. Health, Broadly. 1 Dec 2015. Web. 28 Feb 2016.

My (Radical?!) Guide to Eating Healthy For The Holidays!

Every year, without fail, I see articles talking about how to "eat healthy for the holidays". And, every year, I want to throw something at my computer because they only perpetuate dangerous ideals. Mainly that some foods are "good", some are "bad", and we all must carefully navigate through the forthcoming edible minefield OR ELSE.

So, I decided to come up with my own "guide" for eating healthy during the holidays. And it goes a little something...likeathis...

Eat What Sounds Good To You
 I am serious. And don't call me Shirley.

I am serious. And don't call me Shirley.

I know this is a revolutionary idea for diet companies/food companies/basically everything. And I know the aforementioned are shitting themselves at my very suggestion of such a thing. But here's what I've learned in my years of pre-, during-, and post- eating disorder/recovery/whatever phrase suits ya best -- if something sounds good to your body, that's not a bad thing. Because, as I mentioned before, foods are not inherently good or bad. They're (oftentimes extremely delicious) things that help make our bodies go and jump and hug and throw large objects at our computers when we read frustrating articles. 

Eat a Variety of Stuff

Sure, no food is good or bad, but eating one type of food (even if it was on my "good" list during my disorder) doesn't do a great service to my body because I'm not getting all the nutrients I needed. In fact, I actually feel better and feel I am taking better care of my body when I eat a variety of foods, including foods that used to scare me. Bananas, pudding, soup, sandwiches, cookies, salad, apples with caramel dipping sauce, pizza, zucchini bread, fresh green beans, PIE and MOAR PIE, etc. Each has something to offer me. It's when I'm only eating one thing/denying myself other varieties, that makes it so my body *needs* something else (which often led to purging). 

Eat When You're Hungry, Stop When You're Full

Sounds simple, but it can be incredibly tough. The body is a pretty fantastical machine and can let you know what does/doesn't sound good, when its had enough/wants more, but I knowfirst handhow this sensation can often be lost in the throes of an eating disorder. And it took me a while to not only get it back, but also to trust it. I had to eat very slowly and very mindfullychecking in with myself after each bite. "Am I really full or is that my brain trying to tell me I am?" And then be proud of myself for stopping when I was full, and/or continue eating food if I was hungry. (Oftentimes, if I wasn't sure whether I was full or not, I would stop and remain mindful after the meal in order to see whether I was hungry still and, if so, head went back to fridge and honor that feeling.)

It's OK To Be Full

There is nothing wrong about eating to fullness. Nor is there anything wrong about having more food than you did the day before. Some days I'm more hungry and some days I'm not, so some days I eat more and some days I eat less. That's normal.

*

My list is pretty short compared to the many I've found, but I feel it covers some good basics. No part of this is easy, of course. Not for people who've struggled with eating disorders or some form of disordered eating, or anyone who has been led to think/feels that food is an enemy to struggle against. For me, getting anywhere near to these concepts came after a lot of practice and therapy, so if you aren't "there yet" that is OK! Every single step I took is what got me to this point, even the ones that didn't feel big at the time and especially the ones I wanted to skip over.

Each year I can't help but reflect upon all the Thanksgivings and Christmases that were torture, and how nice it would have been for mewithin the horrific repeats in my mind and self-hate in my heartif there was another "guide" that spoke of food so differently and showed that all the excruciating steps I was taking might lead to a completely radical (and freeing) relationship with food. Regardless of how far fetched it may have seemed at the time.

This makes me want to add one more thing to my list, actually:

Reach Out If You Need Support

There is nothing wrong with needing support through the holidays (or at any time)! For the past two years the hashtag #THX4SUPPORT has been used on social media (you can read about it here) for those who need some community on difficult days like Thanksgiving. I'm not sure if it is being "officially" run this year, but that doesn't mean people still can't use it and support each other if necessary. (Also, don't hesitate to tweet me (@SEtotheCarson) or drop me a line or whatever if you feel drawn to do so!).

And, no matter what, keep fighting to know that you deserve to be happy, to feel and know you have worth, and to be free.

Love,
s.e.c

Thoughts on Therapy

Sometimes, this is what recovery/being recovered looks like for me:

I have to take extra care that all the nutritional labels are either directed to the back of the pantry, or upsidown and against the cabinet shelves. 

I have to actively tell myself that my pants aren't smaller. And even if they are, I could stand to gain some weight. And even if I have gained weight, it's ok. 

I have to decipher whether I would normally have that FOOD if that part of my brain wasn't so heightened and, if so, still eat it if it sounds good.

***

I have always felt that when my mind kicks up, it's for a reason. Something going on in my life, feelings I haven't processed, etc. When it does, the first thing I always try to do is figure out where it's coming from.  

This is rarely easy or straight-forward. And I'm aware that, sometimes, it might just be chemical/brain-based -- that, for whatever reason, that day my everything-physical-which-can-short-circuit does. These days days are very difficult for me to handle and accept, because there is little I can do. If I can't figure out a probable cause, I can't examine it and feel like I'm DOING something. I know I am not the only one who struggles with needing to "actively do something"; it is a large contributor to my actions and tendencies. And it requires continual practice on my part to understand that, sometimes, not doing anything is doing something.

Regardless, lately I've been starting to dig into some deep down stuff. Therapy can be such a process; I've had to start at the top of the muck and keep digging away and away, like an archaeologist. And only recently have I started to get to some things that are ingrained. Things that didn't happen and I needed them to. I have had an inkling of an understanding regarding these Things for a while, but had never determined what looking more closely at it all would do. I am aware of it enough, I'd think. And nothing now could change it. But I don't know. I suppose if I poke at it, like I'm beginning to do, and it still bleeds, then it's still something I need examine. If it's not scarred over, or fully healed, and it still can turn on that part of my brain, then it's still unresolved. And it's just like anything else I've ever done in this journey -- no promise that rummaging through painful self-reflection will feed any benefits, that nothing will come from it other than more pain, more days where I have to be even more careful with nutritional labels than usual. That I could very well slip after nine years of steadiness. 

But there has never been any promise, has there? Just the closing of my eyes and sheer god damn stubbornness.

And yet here I am -- in all my fight and floundering -- and I will keep doing that which scares me.

Why I Love St. Patrick's Day

For many a'year I've been wanting to try to explain why St. Patrick's Day is my favorite holiday (note: this title is often shared with Christmas), but knew I couldn't do it justice.

This year is no exception, but I figured what the hell; I would try it anyway.

People who don't know me well usually react one way when I freak out about St. Patrick's Day every March: a joking elbow to my ribs and eyebrows raised while giving me a slightly obnoxious grin, "You like to 'celebrate', huh?" And while I'm not entirely sure I've ever refused a shot of whiskey in my life, this couldn't be further from the real reasons, which are threefold.

Aon! I don't have an exact date when I started recovery from my eating disorder, but I mark it by this month. The first March, when I had decided to get better and was seeking some intense treatment, I (while walking into the grocery store, no less) was suddenly struck with the nearness of everything. It was like I had gone through so many years where I didn't even realize how awesome March was and then suddenly, here it was in front of me. Fresh air, vigor, and hope.

Nine years later and every time March rolls around, I feel the exact same way. Rejuvenated and unstoppable.

! There was a long, long time where I didn’t like myself, a number of traits in particular. But as I began working through things, I was able to see that a lot of those traits aligned with those from this really beautiful, charming, and magical heritage of mine. And maybe that meant parts of me were beautiful, charming and a bit magical, too.

For instance, I’ve always been a bit loud and I can’t remember a time (unless I was a wee lass) where that didn’t bother me. It always seemed to happen without my noticing it and I could never understand why I couldn’t keep my voice at a normal human decimal range. When I was ill, I overcompensated and became perfectly and acceptably quiet. But now I realize my loudness always comes from an exuberance of being around people I love, of being wholly happy in the moment, of being so overcome with joyous contentment that I have to get it out some way or another or I would just break apart. Of giving back, I guess. So, while it’s not necessarily the ‘gift of gab’, there are very few quiet Irishmen I’ve come across…

My temper was another thing. Anger was one of the “Bad” emotions for my eating disorder because it was scary, it could make me say things that were unmeasured that maybe no one could love me for, it was often explosive, uncontrollable, and powerful. All of which can be frightening to me. And yet, I still happily remember the first time I let myself be angry for the first time after 10 years of my disorder: I was playing hockey, something pissed me off and, rather than stewing on the bench like usual, I skated over and all of the sudden I just broke the shit out of my stick across the boards. This huge flare of emotion and it startled me - this blazing Irish temper; it startled everyone on the bench, too. But no body thought of me any differently and I still have that broken stick saved as a reminder.

Regardless, my temper can still get me into trouble and I try to keep it in check but, usually, when I am all Irish fire (as my husband calls it) it’s because I’m passionate about something. And passion in life is very important to me - even if it’s about beer league hockey.

Stubbornness is a big one. I am irritatingly stubborn. After one of the daily occurrences where I had done something that prompted my husband (God bless him) to comment on it, I responded with “I’m not stubborn, I’m just capable.” Regardless, I think I’ve always liked this about me. I know this trait directly saved me from my eating disorder because I dug my heels in and just decided I was going to get better.

I think this is why I catch myself saying, “I’m Irish” a lot these days. Because I’ve not only been able to accept the aforementioned, but because they also have become some my favorite things about myself. And that’s really really cool to me. To now love things I used to hate. To think that a bit of me might belong to this island of magical, charming, spirited people.

Trí. I love St. Patrick’s Day because it’s like a gift. It’s like a day just for me. Where my mind is quiet. And this one is the hardest to describe of three. No matter how many ways I’ve written it down, worked it out in my head, or tried to phrase it, it is falls frustratingly short. But here goes: the rest of my love for it is about being alive. Because, when you shake off all the other shit, what a glorious thing it is. To be alive. And some days I run and run across the earth as fast as I can, not caring how far or fast I go. And some days I sit on the back porch during a thunderstorm and watch how lightning can be different colors. Some days I breathe in this great, big earth and myself and the people and creatures and things I love so dearly in the world.

But then there’s this one day - this one really special day - where I turn up Irish music really, really loud and dance and dance, and I look around the room at, or think about, my most favorite people – people who have seen me and still love me back. And I am the loudest I have ever been; in laughter and in words and in spirit. And yes, usually then I will pour a shot of whiskey and say my favorite Irish prayer because… God… isn’t it a wonder just to be alive.

#ApproveSudol / #Parity4JP / #Care4K: When Will The Exception Become The Norm?

3/11/16: After seeing marked progress with their daughter at Oliver-Pyatt Facility, the Sudol's were forced to change insurance companies to Blue Shield of California. And, in early January, BlueShield decided 'Jenny's' treatment was no longer "medically necessary" -- even though Oliver-Pyatt sent over 90 pages written by doctors, staff, and caregivers documenting and explaining why and how Jenny is still at an extremely vulnerable position and requires the literal life-saving residential treatment at Oliver-Pyatt. You can read Renee Sudol's letter in full here and support their family with the hashtag #ApproveSudol.

(As of 3/14/16, BlueShield has claimed they have attempted to reach the Sudols by phone, which the Sudols have denied. In other words, BlueShield's actions continue to imply priority for their bottom dollar instead of the life of a 15 year-old girl, not to mention the millions like her who not only have had the courage to seek out treatment, but also fight daily to stay alive.)

4/5/16: After months of ignoring the Sudol's efforts, BlueShield finally got in touch with them only to uphold the previous denial by a BS doctor (who is apparently untrained and not licensed in treating a mental illness as complex as an eating disorder). The Sudols continue to demand proper action (aka, you know, the law (read about The Mental Health Parity and Addiction Equity Act here)), Jenny continues to fight against the deadliest of mental illnesses, and Blueshield continues to put money above the value of a young girl's life.

***Current update 5/5/16:*** BlueShield continues to deny coverage while at least two other families (#Parity4JP and #Care4K) have stepped forward to speak of the insurance company's unwillingness to a) follow the law and b) do the right thing and support their children in treatment for an eating disorder. Instead, these families, friends, and other supporters now have to take to the streets in order to save their childrens' lives.

I'm running out of things to say at this point about how completely and morally despicable this is. There are hundreds of documents from doctors who are actually knowledgeable about, and trained in, eating disorders (can you say that of yours, BlueShield?) supporting the need for these people to receive care. And yet, this picture does well to sum up BlueShield's apathetic and deplorable ways.

However, it also poignantly sums up our own promises:

We. Will. Not. Give. Up.

(Photos borrowed from Twitter: @doreens15)

 

ORIGINAL BLOG POST FROM DECEMBER 26, 2015:

Something awesome happened on the internet just recently; under the hashtag #ApproveSudol, activists drew attention from Aetna, a Fortune 100 company, who had previously denied treatment for a 15 year-old girl fighting an eating disorder). According to @IEDaction, over 34k messages were sent out on Twitter using the hashtag and, after garnering recognition from Aetna's CEO, Sudol was approved for the treatment she needs.

Now, I do not want to take anything away from this -- not from the hundreds of people pulling together for a common cause, not from the bravery and strength of 'Jenny' Sudol, nor the love and dedication of her family. But I feel I must point out that the exact same day I cried with happiness for Jenny and her family I later learned an acquaintance of mine had been denied treatment by her insurance.

In this day and age, I am the kind of person who takes any bit of good she can find and runs with it, but I just couldn't ignore that it took 34,000 messages and (I'm sure) hundreds of other phone calls, letters, etc., in order for get a child to get lifesaving treatment. Especially considering eating disorders have been shown to be the deadliest mental illness(1) – with anorexia having six times the increased risk of death (four times the risk of major depression), bulimia carrying 1.7 deaths per 1000 people, and ENDOS (eating disorder not otherwise specified) carrying 3.3 deaths per 1000(2). In other words, the "mortality rate associated with anorexia nervosa is 12 times higher than the death rate of all causes of death for females 12 - 24 years old"(3). Even with this, one must keep in mind the previous statistics are based only on deaths actually reported as caused by eating disorders; there are far more that say death was only due to heart failure, organ failure, suicide, malnutrition, etc(4), despite these complications having been a direct result of an eating disorder.

Additionally, the risk of death from an eating disorder increases dramatically the longer it takes to be diagnosed and treated later in life. Which is one of many reasons why early intervention and proper treatment is imperative when dealing with eating disorders. Another being they are biopsychosocial illnesses akin to addictions – not a condition done for “attention”, “vanity”, or whatever other misconstrued labels have been applied to them. Just like alcoholism, drug addiction, etc. – eating disorders are multifaceted illnesses that derive from, and attack, many different levels; they need extensive and appropriate treatment to beat and yet, with approximately 11 million Americans suffering from eating disorders, only about one in 10 receive the treatment they need(5).

Needless to say, I could write a novel length rant on insurance companies and their completely messed up views on money vs. people’s well-being, but a number of people have already addressed this (i.e. An Open Letter to Insurance Companies) a lot better, and with fewer expletives, than I ever could. And though I would love it if my thoughts on preventive treatment could single-handedly change the ways of money grubbing insurance companies, we will just have to keep advocating like we have been. Because, as we all know, #ApproveSudol cannot remain the exception -- it must become the norm.

So, while many of us have had our own experiences of seeking treatment and battling insurance companies (a brief description of mine can be found here), I -- like so many others -- ultimately want to stop adding to the list of names who did not receive adequate treatment (like Alana Goldsmith), or proper diagnoses (like Lacey Smarr (article contains weight), or were refused treatment and/or support for its high cost (like Katherine West and Anna Westin). 

Instead, I want to create a new list of those given a chance they so rightfully deserve -- just like Alana, Lacey, Katherine and Anna deserved -- starting with 'Jenny' Sudol.

 

  1. American Journal of Psychiatry, Vol. 152 (7), July 1995, p. 1073-1074, Sullivan, Patrick F.
  2. DeNoon, Daniel J. "Deadliest Phsychiatric Disorder." WebMD. WebMD, 12 July 2011. 23 Dec 2015. www.webmd.com/mental-health/eating-disorders/anorexia-nervosa/news/20110711/deadliest-psychiatric-disorder-anorexia
  3. "Eating Disorder Statistics". South Carolina Department of Mental Health. n.p., n.d. 23 Dec 2015. www.state.sc.us/dmh/anorexia/statistics.htm
  4. "Eating Disorder Statistics". ANAD. n.p., n.d. 23 Dec 2015 www.anad.org/get-information/about-eating-disorders/eating-disorders-statistics
  5. Eldred, Sheila Mulrooney. "Eating Disorder Patients Fight Double Battle: Their Disorder and Insurance Firms." Health. Minnesota Post. 17 Feb 2012. 23 Dec 2015. www.minnpost.com/health/2012/02/eating-disorder-patients-fight-double-battle-their-disorder-and-insurance-firms

 

Helpful Links:

https://www.nationaleatingdisorders.org/get-facts-eating-disorders

http://www.nationaleatingdisorders.org/insurance-resources

http://eatingdisorderscoalition.blogspot.com/2015/06/annaslaw-by-kitty-westin.html

http://thehill.com/blogs/congress-blog/healthcare/247438-why-the-anna-westin-act-of-2015-matters

http://www.wday.com/news/3890325-minn-mother-aims-help-patients-eating-disorders-across-country