It has really been far too long since I've written on this blog, and I'm sorry for how I've somehow let it completely fall to the way-side over the last few months. Between working and going to school full-time, my life has been a bit crazy and hectic of late, which in many ways has been strangely welcome, as I feel that I am finally creating a life that is more than the small existence I've known for so many years. Things are definitely far from perfect, and I do continue to struggle with various aspects of the eating disorder/am still trying to navigate through the challenges of recovery on a day-to-day basis, but I am building something that feels worth sticking around for, and that is so much more than I've ever been able to say for myself before.
I felt prompted to write on here after receiving the heartbreaking news yesterday that a friend, who I met in treatment several years ago, had passed away last week due to the ongoing struggle she'd had with the disorder. This friend and I hadn't maintained close contact after treatment, but I tried to check in on her every now and then and still attempted to keep tabs on her through social media. I knew that things were not necessarily going "well" for her, but I had no idea how bad things actually were. I don't have words to explain what it felt like to pull up her obituary, reading that she "died peacefully at home", and "was survived by her grandparents, parents, and younger sisters". It just doesn't seem real. And it shouldn't be.
I think that the sentiment is shared by all who knew her, and even those that didn't. She was only 25. She was bright, funny, caring, and so deeply loved by so many people. She deserved a future, a life that would have stretched on for many more years. Death is something we all struggle to make sense of, regardless of the deceased person's age or the cause(s) associated with their parting, but I think in cases such as this one it becomes even more difficult to grasp. I've read through some of the comments left on her online memorial page and her personal Facebook wall, and while I know that all of these messages were written simply to express love for this individual and her family, there were many that expressed sorrow over the fact that she had "lost her battle", how they wish they could have given her "the strength to keep fighting"- and that is what I wanted to take some time to write about this morning.
It is a common way that people speak about illness, especially mental illness - referring to the sick individual as a "fighter", encouraging them to "be strong" to "fight harder" and to not let the illness "win". It is meant, I am sure, as a means of encouragement or empowerment. To somehow communicate to the individual belief that they have the capability to "turn things around". But as someone who has been in that place more times than I would like to recount, I have never experienced it to be either of those things. (encouraging or empowering) Rather, it just exacerbated the beliefs I already held that there was something inherently wrong with me that I couldn't just "be stronger" and "fight my way through". Illnesses are not battles. There are times, of course, where there are parallels (my mental real estate does often feel like some sort of World War III) but it is not the same. I am someone who struggles with a mental illness. I am not a soldier or a warrior or a fighter etc. etc. And the same was true for my friend. She did not die last week because she lacked the strength to keep trying. And I don't believe that if she had been stronger or if she had "fought harder" that the outcome necessarily would have been different. She had an illness. I think that there are many factors that play into whether or not a person recovers, and I am not sure, given our experiences together and conversations thereafter, that she ever truly received the treatment she needed, but I don't see personal strength as being one of them. To imply such is to subtly (or not so subtly) shame those who remain sick and unable to "beat" their disease. It is truly no different than saying that someone with terminal cancer "lost their battle", or "could not keep fighting". The psyche is powerful, yes, but illness is far too complex to be "fought against" by sheer strength and will. It simply does not work that way.
I feel protective not only of my dear friend who passed, but of my other friends who continue to struggle. I do not want the (well-intentioned) "inspirational" messages to invalidate the larger reality of a disease that is outside of their immediate control, and more than anything I don't want this friend, or any of my friends, to be remembered as being "not strong enough to win their battle." Recovery does involve choices, hard ones, and lots of them - so I also don't want this post to communicate hopelessness or helplessness in the midst of struggle, but it is far more complex than just "fighting". My best friend took her life after spending over a decade struggling with both Anorexia and Bulimia, and one of the things she talked about with regularity was the feeling that she was defective, that there was "something missing" - because she wanted recovery so, so badly and tried time after time with every ounce of persistence and resilience known to mankind, and still couldn't seem to 'make it happen'. I think there is a wide-spread misunderstanding surrounding eating disorders and mental illnesses in general, that if an individual wants to get better badly enough, and if they try harder enough, they will be able to. And while I wish it were that simple, I don't believe that it works that way. I don't believe that every person out there is capable of recovery, and I think we need to stop speaking as though that is the case.
I hope this post doesn't feel discouraging or disheartening to those who read it, but having seen so many of these messages floating around on social media, especially in reference to someone whom I cared so much about, I felt the need to share my perspective. My friend did not get well simply because she did not get well. Not everyone does. She did not pass away due to lacking the necessary strength to get better, and I want her to be remembered not as someone who "lost her battle", but as the wonderful person that she was.
Tuesday, June 2, 2015
Thursday, February 26, 2015
Does "Having an Idea" Really Help?
First off, I want to sincerely thank all of you who shared my post on NEDA. Your support of me and this blog really means so, so much and I am so grateful for all of you.
After seeing all of the National Eating Disorder Awareness Week posts Facebook/Instagram etc. (and there have been a lot!) I wanted to write something more on here.
NEDA's theme this year is "I Had No Idea" and the majority of the posts that I've seen have followed that theme, with statements such as "I had no idea that my diet would lead to x, y, z" or "I had no idea that over-exercise was making me sick.."etc. and while I don't at all think that anyone really has an "idea" of what they're in for when first developing an eating disorder, there's something about all those posts that has just really rubbed me the wrong way.
These messages seem as though they're meant as "warnings" to someone who might be susceptible to developing an eating disorder. ("I didn't know that this would happen to me, but now that you do know, don't do it!) I see a lot of posts about prevention, articles stating that through increasing awareness we'll be able to decrease the number of people who suffer from the disorder.
It's a noble goal, no doubt. And I don't think there is anything wrong with efforts towards awareness. However, I don't believe that eating disorders are preventable, or that if people knew more about what they were getting into they wouldn't "choose" to develop the illness. Eating disorders, while definitely impacted by one's environment, aren't the result of environment alone. There are such strong biological and genetic factors that play into who gets sick and who doesn't that unless we're able to determine a way to alter a person's genetic makeup, we aren't ever going to be able to "prevent" eating disorders. And in talking about these disorders as though they are something an individual either chooses or doesn't, or as something that we can warn people about, we aren't doing anyone a bit of good. (quite the opposite, actually)
When I first began struggling, I had a lot of people try to "talk me out of it", told that I was going to die, that my body would start eating itself/that my bones would start decaying, that my hair would fall out etc. etc. I was told that I'd be sent to the hospital if I couldn't start eating at home (and was then told lots of horror stories about the hospital in effort to 'scare' me into getting my act together..), that I'd never be able to have kids when I was older (as a child my dream was to be the exact replica of my mom when I grew up, so that was a really big scare) and yet none of that information stopped my simple attempt at the Special K diet from spiraling into a full-blown mental disorder. You can't warn someone out of developing schizophrenia or OCD. The sick individual does not "choose" to be sick because they aren't aware of the consequences involved. No one chooses a mental illness at all. The disorder chooses the individual who is biologically pre-disposed to the illness, and yet somehow the majority of the efforts at "awareness" seem to be imply that it's the other way around.
I think awareness is important, but I see the purpose and goal of awareness as not preventing the disorder but as finding better methods to treat those who are already sick. Most all of the girls I've met in treatment have known that the eating disorder wasn't "a good idea", but that didn't stop them from continuing to struggle. And if the professionals treating those with eating disorders are operating under the assumption that these diseases are choices/something that a person could be warned against or talked out of, those being "treated" are left at a pretty scary disadvantage, because all good intentions aside, you can't treat what you don't understand.
As I've written before, I do believe that there are choices in recovery and I never want my writing to imply that I see the person with an eating disorder as being helpless in the face of their struggle, but I don't believe that anyone - ever - regardless of whether they are properly informed and aware of the risks involved - can choose whether or not to get sick. I wish we could prevent eating disorders with awareness, but it just doesn't work that way.
This feels like a rather disheartening note to end on, but if you take anything from this post I hope it is more compassion for yourself in your struggle. You didn't choose this. You couldn't have known better or been more aware. It wouldn't have mattered. (And for those who don't struggle personally, but love someone who does, I hope you know too that you neither caused the disorder nor could have prevented it or seen it coming/intervened earlier etc.) I would also really love to hear any of your thoughts and opinion - so please feel free to comment and share your input!
After seeing all of the National Eating Disorder Awareness Week posts Facebook/Instagram etc. (and there have been a lot!) I wanted to write something more on here.
NEDA's theme this year is "I Had No Idea" and the majority of the posts that I've seen have followed that theme, with statements such as "I had no idea that my diet would lead to x, y, z" or "I had no idea that over-exercise was making me sick.."etc. and while I don't at all think that anyone really has an "idea" of what they're in for when first developing an eating disorder, there's something about all those posts that has just really rubbed me the wrong way.
These messages seem as though they're meant as "warnings" to someone who might be susceptible to developing an eating disorder. ("I didn't know that this would happen to me, but now that you do know, don't do it!) I see a lot of posts about prevention, articles stating that through increasing awareness we'll be able to decrease the number of people who suffer from the disorder.
It's a noble goal, no doubt. And I don't think there is anything wrong with efforts towards awareness. However, I don't believe that eating disorders are preventable, or that if people knew more about what they were getting into they wouldn't "choose" to develop the illness. Eating disorders, while definitely impacted by one's environment, aren't the result of environment alone. There are such strong biological and genetic factors that play into who gets sick and who doesn't that unless we're able to determine a way to alter a person's genetic makeup, we aren't ever going to be able to "prevent" eating disorders. And in talking about these disorders as though they are something an individual either chooses or doesn't, or as something that we can warn people about, we aren't doing anyone a bit of good. (quite the opposite, actually)
When I first began struggling, I had a lot of people try to "talk me out of it", told that I was going to die, that my body would start eating itself/that my bones would start decaying, that my hair would fall out etc. etc. I was told that I'd be sent to the hospital if I couldn't start eating at home (and was then told lots of horror stories about the hospital in effort to 'scare' me into getting my act together..), that I'd never be able to have kids when I was older (as a child my dream was to be the exact replica of my mom when I grew up, so that was a really big scare) and yet none of that information stopped my simple attempt at the Special K diet from spiraling into a full-blown mental disorder. You can't warn someone out of developing schizophrenia or OCD. The sick individual does not "choose" to be sick because they aren't aware of the consequences involved. No one chooses a mental illness at all. The disorder chooses the individual who is biologically pre-disposed to the illness, and yet somehow the majority of the efforts at "awareness" seem to be imply that it's the other way around.
I think awareness is important, but I see the purpose and goal of awareness as not preventing the disorder but as finding better methods to treat those who are already sick. Most all of the girls I've met in treatment have known that the eating disorder wasn't "a good idea", but that didn't stop them from continuing to struggle. And if the professionals treating those with eating disorders are operating under the assumption that these diseases are choices/something that a person could be warned against or talked out of, those being "treated" are left at a pretty scary disadvantage, because all good intentions aside, you can't treat what you don't understand.
As I've written before, I do believe that there are choices in recovery and I never want my writing to imply that I see the person with an eating disorder as being helpless in the face of their struggle, but I don't believe that anyone - ever - regardless of whether they are properly informed and aware of the risks involved - can choose whether or not to get sick. I wish we could prevent eating disorders with awareness, but it just doesn't work that way.
This feels like a rather disheartening note to end on, but if you take anything from this post I hope it is more compassion for yourself in your struggle. You didn't choose this. You couldn't have known better or been more aware. It wouldn't have mattered. (And for those who don't struggle personally, but love someone who does, I hope you know too that you neither caused the disorder nor could have prevented it or seen it coming/intervened earlier etc.) I would also really love to hear any of your thoughts and opinion - so please feel free to comment and share your input!
Thursday, February 5, 2015
For NEDA Week...
As we're getting into February, I've once again been seeing lots of post on social media about National Eating Disorders Awareness Week (Feb. 22nd-28th) and while I don't mean to sound cynical, I really kind of wonder what people think their posts are going to accomplish, or what the week as a whole is supposed to accomplish. And I wonder if any of my friends who participate in the walks and fundraisers each year have ever actually questioned what the National Eating Disorders Assosciation as an organization is really accomplishing.
It's made me think of the article I submitted to Huffington Post earlier this year on my own experience and thoughts on NEDA, and I've decided to share it on here.
---
Having spent over 12 years struggling with an eating disorder, I had definitely heard of NEDA (The National Eating Disorders Association). I'd seen lots of girls with the “recovery” tattoos (the NEDA logo) and the social media posts advertising NEDA fundraising Walks. The hospital programs I had been treated at were decorated with NEDA posters about "loving your genes" and being "be-you-tiful.” However, I never had any personal contact with NEDA until June of 2013 when I was hospitalized at the ACUTE Center for Eating Disorders in Denver, Colorado.
This admission to ACUTE followed several months of denied access to the treatment that was necessary to keep me alive. (I had sought inpatient treatment earlier in the year, but was discharged after “using” my allotted 15 days of coverage.) I admitted to ACUTE on a Thursday in June at 58% of my ideal body weight. My liver was failing, and my glucose level hovered between 14-20 mg/dL (normal is 80-100). I was told that, had I not admitted when I did, I wouldn't have made it through the weekend. I could feel myself dying at that point - physically, mentally, emotionally - and it was terrifying. I didn't want to die, but, after months of trying, I knew that I couldn't save myself.
ACUTE is only a medical unit, used as a prerequisite to treatment when a patient is too medically compromised to participate in traditional inpatient programs. The plan upon my admission was for me to stabilize at ACUTE and step-down to an inpatient hospital with the hope that I’d be able to get more time approved by my insurance. Two weeks into my hospitalization, my case manager told me that I didn't have ANY inpatient days left for the year; unless they were able to help me find a scholarship, I would have to go home directly from ACUTE. I was told that this would buy me, at most, a few months to say goodbye to my family and loved ones, and that without further treatment, I would die.
I was encouraged to contact NEDA, who may have been able to provide me with resources to access treatment. I was terrified. The prospect of going home to die wasn't something I could really wrap my mind around, so I called their hotline.
I explained my situation and was told that they didn't offer treatment scholarships. It was explained to me that their funding went toward "promoting awareness" rather than funding treatment, "in hopes of creating a world in which eating disorders do not exist." (To which I thought, “Well, it looks like you’re about to have a world with one less.”)
I was confused, as I had always assumed that NEDA fundraisers and walks went toward helping people with eating disorders, and curious: if they aren't helping people with eating disorders directly, where does all of this money go? I did some research and what I found made me feel sick to my stomach:
-Lighting up the Empire State Building green and blue for National Eating Disorders Awareness Week in February. (NEDAW)
-Bringing life-sized Barbie mannequins into schools to illustrate that, if Barbie were human, she would have to walk on all fours.
-Circulating articles such as, "10 Reasons to Date a Girl in Recovery from an Eating Disorder” (I really wish that I was kidding..)
-Posters with pictures of toilet bowls that read "How Many People Will We Lose on This Diet Each Year?”
"Research" on "What percentage of American women wear lipstick?" and "What percentage of American women have been on a diet?"
-Documentaries on Photoshop and the evils of the media.
I could go on...
What I didn't find, however, were any efforts being made to actually help anyone struggling with an eating disorder. And honestly nothing to raise any sort of true awareness as to what an eating disorder is or what the experience of having one is like.
For NEDAW (along with lighting up the empire state building), they put out an info-graphic titled "The War on Women's Bodies: The Media, Body Hatred, and Eating Disorders." There is enough worth discussing in the title alone, but as I looked through it I realized that most of the information it provided was beside the point.
The first point on the graphic: "98% of women are not as thin as fashion models." Great. Next: "The average American Woman is 5'4'' and weighs 165 pounds. The average Miss America winner is 5'7'' and weighs 112 pounds" It continued from there, “What percentage of girls and women think they are fat?”etc, etc,
Nowhere on the info-graphic did NEDA highlight the percentage of people who die because they can't access the care that they need,or the percentage of patients kicked out of treatment prematurely due to lack of insurance coverage, or what eating disorders are, how they differ from “diets” and how they ruin lives.
Eating disorders are not caused by Barbie. Or the media. Or however much Miss America weighs. If they were, we'd all have eating disorders. They are mental illnesses. I wasn't getting diet tips from Self magazine prior to my admission to ACUTE. I was locking myself in my bedroom for weeks on end because I was afraid of 'inhaling' the calories that I believed would be in the air if I was anywhere around food. And I truly could not have cared less as to how much Miss America weighed. To be honest, I wasn't really even that focused on how much I myself weighed. Because at the end of the day, that's not what eating disorders are about. My eating disorder was driven by an inability to live with myself, a need to get rid of who I was. And then eventually, I just got so sick that it wasn't driven by anything anymore and I was dying and terrified but too stuck to do anything about it.
I needed help. And unfortunately, help wasn't there.
I know that I'm not the only one. I know that there are thousands of other men, women, and children in situations similar to mine. And they're not getting help either. That isn't okay.
It isn't okay that people are dying because they aren't able to access the treatment they need, and meanwhile the National Eating Disorders Association is spending thousands to light up the empire state building ("lighting the way to recovery").
Something needs to change.
I did eventually get the help that I needed (I went home, relapsed, got a new insurance policy at the end of the year, and went back) I still had to leave early due to insurance cutting out, but I was able to stay long enough to really begin doing the work of recovery, and even though things are remain very difficult, I'm strong enough now to continue doing that work on my own. Part of that work has included finding (and using) my voice, and seeing it as one that matters, and that's what I'm doing here.
It's made me think of the article I submitted to Huffington Post earlier this year on my own experience and thoughts on NEDA, and I've decided to share it on here.
---
Having spent over 12 years struggling with an eating disorder, I had definitely heard of NEDA (The National Eating Disorders Association). I'd seen lots of girls with the “recovery” tattoos (the NEDA logo) and the social media posts advertising NEDA fundraising Walks. The hospital programs I had been treated at were decorated with NEDA posters about "loving your genes" and being "be-you-tiful.” However, I never had any personal contact with NEDA until June of 2013 when I was hospitalized at the ACUTE Center for Eating Disorders in Denver, Colorado.
This admission to ACUTE followed several months of denied access to the treatment that was necessary to keep me alive. (I had sought inpatient treatment earlier in the year, but was discharged after “using” my allotted 15 days of coverage.) I admitted to ACUTE on a Thursday in June at 58% of my ideal body weight. My liver was failing, and my glucose level hovered between 14-20 mg/dL (normal is 80-100). I was told that, had I not admitted when I did, I wouldn't have made it through the weekend. I could feel myself dying at that point - physically, mentally, emotionally - and it was terrifying. I didn't want to die, but, after months of trying, I knew that I couldn't save myself.
ACUTE is only a medical unit, used as a prerequisite to treatment when a patient is too medically compromised to participate in traditional inpatient programs. The plan upon my admission was for me to stabilize at ACUTE and step-down to an inpatient hospital with the hope that I’d be able to get more time approved by my insurance. Two weeks into my hospitalization, my case manager told me that I didn't have ANY inpatient days left for the year; unless they were able to help me find a scholarship, I would have to go home directly from ACUTE. I was told that this would buy me, at most, a few months to say goodbye to my family and loved ones, and that without further treatment, I would die.
I was encouraged to contact NEDA, who may have been able to provide me with resources to access treatment. I was terrified. The prospect of going home to die wasn't something I could really wrap my mind around, so I called their hotline.
I explained my situation and was told that they didn't offer treatment scholarships. It was explained to me that their funding went toward "promoting awareness" rather than funding treatment, "in hopes of creating a world in which eating disorders do not exist." (To which I thought, “Well, it looks like you’re about to have a world with one less.”)
I was confused, as I had always assumed that NEDA fundraisers and walks went toward helping people with eating disorders, and curious: if they aren't helping people with eating disorders directly, where does all of this money go? I did some research and what I found made me feel sick to my stomach:
-Lighting up the Empire State Building green and blue for National Eating Disorders Awareness Week in February. (NEDAW)
-Bringing life-sized Barbie mannequins into schools to illustrate that, if Barbie were human, she would have to walk on all fours.
-Circulating articles such as, "10 Reasons to Date a Girl in Recovery from an Eating Disorder” (I really wish that I was kidding..)
-Posters with pictures of toilet bowls that read "How Many People Will We Lose on This Diet Each Year?”
"Research" on "What percentage of American women wear lipstick?" and "What percentage of American women have been on a diet?"
-Documentaries on Photoshop and the evils of the media.
I could go on...
What I didn't find, however, were any efforts being made to actually help anyone struggling with an eating disorder. And honestly nothing to raise any sort of true awareness as to what an eating disorder is or what the experience of having one is like.
For NEDAW (along with lighting up the empire state building), they put out an info-graphic titled "The War on Women's Bodies: The Media, Body Hatred, and Eating Disorders." There is enough worth discussing in the title alone, but as I looked through it I realized that most of the information it provided was beside the point.
The first point on the graphic: "98% of women are not as thin as fashion models." Great. Next: "The average American Woman is 5'4'' and weighs 165 pounds. The average Miss America winner is 5'7'' and weighs 112 pounds" It continued from there, “What percentage of girls and women think they are fat?”etc, etc,
Nowhere on the info-graphic did NEDA highlight the percentage of people who die because they can't access the care that they need,or the percentage of patients kicked out of treatment prematurely due to lack of insurance coverage, or what eating disorders are, how they differ from “diets” and how they ruin lives.
Eating disorders are not caused by Barbie. Or the media. Or however much Miss America weighs. If they were, we'd all have eating disorders. They are mental illnesses. I wasn't getting diet tips from Self magazine prior to my admission to ACUTE. I was locking myself in my bedroom for weeks on end because I was afraid of 'inhaling' the calories that I believed would be in the air if I was anywhere around food. And I truly could not have cared less as to how much Miss America weighed. To be honest, I wasn't really even that focused on how much I myself weighed. Because at the end of the day, that's not what eating disorders are about. My eating disorder was driven by an inability to live with myself, a need to get rid of who I was. And then eventually, I just got so sick that it wasn't driven by anything anymore and I was dying and terrified but too stuck to do anything about it.
I needed help. And unfortunately, help wasn't there.
I know that I'm not the only one. I know that there are thousands of other men, women, and children in situations similar to mine. And they're not getting help either. That isn't okay.
It isn't okay that people are dying because they aren't able to access the treatment they need, and meanwhile the National Eating Disorders Association is spending thousands to light up the empire state building ("lighting the way to recovery").
Something needs to change.
I did eventually get the help that I needed (I went home, relapsed, got a new insurance policy at the end of the year, and went back) I still had to leave early due to insurance cutting out, but I was able to stay long enough to really begin doing the work of recovery, and even though things are remain very difficult, I'm strong enough now to continue doing that work on my own. Part of that work has included finding (and using) my voice, and seeing it as one that matters, and that's what I'm doing here.
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