Sunday, 25 November 2018

ED, Bigger Bodies, and Health Care


Dear Blog Readers,

This week is part 2 of our look at living with Eating Disorders in bigger bodies.

If discussion of experiences with the medical profession are difficult for you to read, this may not be the post for you. I have chosen to weave together these stories to give voice to what is mostly silent. The shame of being shamed by a doctor is intense. People of all bodies experience doctors shaming them. What is different for people in bigger bodies is that this is reflected in our every day experience, in media, in television and movies, in the design of public space, and many other aspects of society than you could possibly imagine.

I encourage you, if you feel able, to read and feel the discomfort that so many of us feel every day. If you aren't up to it, your feelings are valid. Take good care of yourself and come back next week to check out the next post.

"[...] the core idea is that our societal terror of big bodies means those who have them often don't get adequate medical care" - Denise Balkassoon, Globe and Mail, August 7, 2018

The shaming and ostracizing of bigger bodies has become a pathology and the source of illness instead of simply being one of the determinants of health. The medical profession and the pathologizing of obesity plays a major role in the health care of people in bigger bodies. From the stories I have gathered, women in bigger bodies often face immediate dismissal from doctors. In the past I have hated conversations about negative medical experiences. It causes feelings of hopelessness. And here I am discussing the hard and messy truth of Eating Disorders. These voices have the right to be heard.

As discussed in Part 1, being in a bigger body means living in a world that was not designed with you in mind. It means living in a body that doesn't fit in ... literally. In order to talk about the healthcare profession, I first need to remind you of last week's exploration of how the physical world has multiple barriers that leave people of size feeling like they cannot participate in important aspects of social interactions. Thus further ingraining the idea that we do not belong.

"As a body positive woman of size, I have found it increasingly difficult when it comes to the world not being designed for bigger bodies. Last year I went to see my favourite comedian at the Sony Centre in Toronto. I could barely fit into the seat. My hips and thighs were being bruised and my legs went numb. My arms were in my neighbour's space so I had to put my arm over the back of my friend's chair the whole time so that I could scooch away from my neighbour as much as possible. I tried to enjoy my time, but I was in agony. This has occurred at Massey Hall as well. It happens in places with flimsy plastic chairs, arms or not, I have to hover on the chair for fear I'll break it. If I sit at a booth, I am being wedged in and my tummy gets a big dent across it that hurts. Also - any lawn furniture EVER." - H

It is exhausting to constantly have to stake out the place you have been invited to make sure there is furniture you can sit on. It evokes a great deal of shame to show up to an activity with your friends and it never occurred to them that this body will struggle through it, if this body can do it at all. Or how mortifying it is to show up to go snow shoeing with friends only to learn that there is a weight limit and you have surpassed it.

"Next week I am going on a plane and I'm nervous about the seats. I'm cool with asking for a seatbelt extender, loud and proud. I'm just worried about the arms digging in. On the TTC, my fave is when someone is on the aisle seat and there is a free window seat. I ask politely to sit, and they don't stand up, they make me squeeze past them. I love rubbing my big body across them harshly when they do this. Like, do you not see my size? When I get two seats to myself I have noticed that folks are hesitant to sit beside me, thinking there isn't enough room." - H

On top of the messages physical spaces give us, and society says to us, there are the doctors and other health professionals that shame us and prevent us from seeking care.

When you add the complex issues of having an Eating Disorder and the compounded feelings of shame surrounding body image, you have the perfect storm for being too anxious to advocate to doctors.

We give great power to people with medical degrees. We hand over our autonomy to the experts, as though we know nothing about our own bodies and rely on them to tell us what is going on inside of us. Ultimately, these experts turn to weight.

Blaming ailments on weight is a short-cut. Its a cop out. And it kills.

It is time for speak up about all the times we have been to a doctor who ran no tests, provided no answers, and blamed the ailment on weight.

"There is evidence to suggest that people avoid the healthcare system for all kinds of reasons, one of them being the stigma an shame they encounter, and in some cases that could be really harmful to their health." - Michael Orsini, Professor UofT, July 2018

I have spent several months collecting stories about what it is like to visit a doctor while having an Eating Disorder and living in a bigger body. In my own life, I have had a neurologist blame my weight for my memory-loss, moments of confusion, and a tremor in my left hand. Her report to my family doctor included recommendations for drastic surgical procedures. Stories like this lead to poorer health and even death. In terms of this blog, some of the stories were so horrible, and so disgusting that I can't share them. To the people who shared those stories, I am sorry that you have had to live through this shaming and the pain of your untreated, undiagnosed ailments. You are heard.

"Ellen Maud Bennett died on May 11 after being diagnosed with inoperable cancer and being given only days to live [...] Ellen's dying wish was that women of size make her death matter by advocating strongly for their health and not accepting that fat is the only relevant health issue." - Globe and Mail, July 30, 2018

It is painful and infuriating to watch a friend refuse to see a doctor about an injury for fear of weight-assumption-judgement. The belief that seeking medical attention for an injury is a waste of time, is evidence of our on-going fear that we will not be heard and we will not be believed.

"I knew there was something wrong with my knee, but I also knew the doctor would say that it would feel better if I lost weight and not even bother to take an x-ray." - S

"When I had extreme pain around my rib cage that felt like I was being crushed and couldn't breathe, I was rushed by ambulance to the nearest hospital where the triage nurse asked me 2 questions and sent me to the waiting room saying based on my weight it was a 'gallbladder attack'. Despite a very unclear ultrasound result, I was admitted for 4 days and put on morphine which actually made it worse. After the surgeon made numerous comments about gallstones in fat people, he cut me open and removed a piece of my body, he said "when we got the gallbladder out, it wasn't actually inflamed at all and there were no stones. It was fine. good luck." ............ 11 years later and I continue to have these attacks and am told they are "phantom gallbladder attacks" ... but no longer have one. After many years, it was my therapist who guided me to realize that it is panic attacks." - D

When you have an Eating Disorder, going for a medical appointment can be excruciating. When every medical professional you encounter exudes what you interpret as judgment, or actually make judgmental comments. These stories and the stories of others make me sad and angry. I feel like we should all be angry. None of this is acceptable. Being in a bigger body makes it easy to be dehumanized. Bigger bodies leads to assumptions about behaviours and stereotypes about being lazy or undisciplined. Medical professionals are not immune to the beliefs of society.

"My doctor doesn't believe me that I have an Eating Disorder. She never has. She makes jokes about my body and comments on what I should and should eat. She makes me feel worse and worse every time I see her." - P

"I was symptomatic [engaging in Eating Disorder symptoms/behaviours] in the psych ward because of stress. The doctor suggested that being symptomatic wasn't a problem because it looked like I could lose a little weight." - A

If we are to create change, it needs to begin with the people we place our trust in; we need to be able to trust that the experts in our physical health can put aside their bias and find the core of the medical issue instead of dismissing bigger bodies and using weight as the only determinant of health.

I want to end this piece on a more positive note. If you need support in finding a health care provider familiar with the specific and unique needs of people with ED, you can visit the Sheena's Place website, contact Sheena's Place, or contact NEDIC (see contact information below).

There are people out there who understand that a bigger body does not define who you are. People are far less aware of our bodies than we imagine.

Take care of yourself and be sure to nourish your body, mind, and spirit.

Your blog moderator,

Kira


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Work published on this blog is property of the writer/artist. Content is edited and approved by the moderator. This blog is not a substitute for medical advice. Please see your health practitioner if you have concerns about yourself or your recovery. 
If you would like to share your stories, writings, and art, please email Kmccarthy@Sheenasplace.org
If you or someone in your life is struggling with an Eating Disorder, you can contact the National Eating Disorder Information Centre (NEDIC) at nedic.ca
For information or to register for groups at Sheena's Place, please visit www.sheenasplace.org

Sunday, 18 November 2018

Torch Song for the Little Bird


Dear Readers,

Recently I discovered a song that made me think of my inner child as a little bird. I call it my recovery anthem. I love to sing it at the top of my lungs. Especially while I’m driving. Imagine my delight when Katharine submitted this poem! I hope we can all listen carefully to our little birds this week. Listen past that critical voice and hear our own true song. 
Take good care of yourself, and remember to nourish your body, mind, and spirit. 
Your blog moderator,
Kira 


torch song for the little bird
early morning light

softly illuminates

the etching of a

bird on my blush

coloured wall.

“be careful with whom

you share

your little efforts

at staying luminescent.”

says the brown bird

perhaps a wren,

perhaps a swallow.
“now is your time to bring

your brightest self to the world,

even though.”

i say to my small unfurling self

that is almost ready to fly.


- katharine angelina love 

 

Sunday, 4 November 2018

The Voiceless: Part One

I apologize for the formatting and random white backgrounds. I am working on the glitch ... 

Part One

Dear Blog Readers,

When I proposed this blog, I envisioned a space for vague writing and art that was full of glitter and rainbows. I am coming to terms with the fact that Eating Disorders are hard and messy. They are gross and painful and heart-wrenching. And while I love the idea of glitter and rainbows, there are so many voices that need to be heard. The hard, messy, painful struggle IS beautiful.

There is messiness and discomfort even within the Sheena’s Place Safe Space Guidelines. The reality is, there is nothing comfortable about Eating Disorders. This blog will continue to challenge common narratives while staying within the guidelines, and will include these brief introductions to allow readers to make the choice to continue reading or not.

In order to change the way EDs are understood and treated, and to work towards destigmatization, we have to talk about the problems WITHIN the community and WITHIN treatment. We have to examine experiences of people navigating supports in bodies deemed unacceptable. Bodies that have been pathologized. We have to identify our struggles, name them, and come together as a community to make change. We have to talk about the hard stuff.

Due to the length and complexity of this piece, I will be posting it in 2 parts. I believe that the importance of giving voice to the voiceless requires time to read, process, digest, reflect upon, and take in the thoughts, ideas, and emotions presented in this piece.

We welcome your feedback, whether you agree or disagree. Your voice is important.

Part 1 is below and discusses women in bigger bodies feeling excluded or unwelcome in spaces created for Eating Disorder services and supports.

Part 2 will be posted next week. It will explore the experiences of women living in larger bodies as they navigate the medical system.

If discussions about bigger bodies, BED, and/or medical professionals fat-shaming are hard for you to read, then this may not be a post you want to read. If you stop reading here, your struggles are valid and your choice for your self-care is valid. Take good care of yourself, and remember to nourish your body, mind, and spirit.

Your blog moderator,
Kira

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THE VOICELESS

I have woven together a series of stories shared by women in bigger bodies who have Eating Disorders. It is important to begin by saying that people of all sizes experience the world in unique ways. The purpose of this piece is not to dismiss the experiences of people with Eating Disorders who do not live in bigger bodies. I want to acknowledge that your experiences are of equal worth. For women in bigger bodies, there is very little public discussion about what it is like to live in a bigger body at all, let alone to live in a bigger body with an Eating Disorder. It is not my aim to belittle or ignore the experiences of anyone else. This piece aims to give voice to the women living in bigger bodies who have not had the space to share their stories. As you read, you may have feelings of defensiveness, or anger, or sadness. I invite you to ask yourself why you are feeling what you are feeling. I invite you to explore where your defensiveness is coming from.

“I feel like if I try to talk about my experiences of ED in a bigger body, others around me get defensive and insist that they experience the same body shame that we do. They don’t. Of course they have experiences of body shaming, and judgemental comments. It just isn’t the same. Their bodies are acceptable. Mine isn’t acceptable anywhere.” - PD

I was born into a culture and society that places value on the size of bodies. Throughout history, the value of a person has often been dependent on the current idealized body. I live in a country that was not designed with larger bodies in mind. People don’t want these bodies to exist. The multi-billion dollar diet industry preys on the shame and judgement of bodies. This piece focuses on female-identified bodies. Women in larger bodies are terrifying to people for many reasons. We are also treated as though we are open to comments, advice, ridicule, and control.

“A woman I really respect once told me, “When they look at me, I can feel that my body is their worst nightmare.”  And our bodies just might be their worst nightmares.  And it’s stopping me from fully accepting (or maybe embracing) my eating disorder.” - Maddi

Existing in a bigger body is exhausting. Physically, my body takes a beating. My exhaustion, though, is psychological and emotional. Going out in public is always intimidating. Will this be one of those days that a stranger insults my body? Or will it be a friend offering me diet advice? Maybe today is family-criticizes-my-body day. Or, perhaps it will be family offers a bribe to have me force my body to conform to what they think is an acceptable standard. People I have never met, comment on my appearance, my choices, and my very existence. Strangers yell horrible things at me. For no reason other than that I am evidence of the worst thing that could happen to them. People invite their friends in bigger bodies to do things in spaces that weren’t designed for them; places that have chairs with arms, or small chairs, or plastic chairs that will crack, leather (real or not) furniture that we sweat on and stick to and leave embarrassing marks on, trips that require flying on airplanes that charge you for 2 seats, movie theatres with arms that don’t lift up, tiny bathroom stalls we are physically unable to navigate, diet propaganda everywhere, physical activities with posted weight limits ... everywhere we turn, there is something else reminding us that we don’t belong and that we aren’t welcome.

EATING DISORDER SUPPORTS

“I feel like even within a community where I’m meant to belong, it’s divided into ‘us’ and ‘them;’ that our bodies somehow dictate our struggle or that they preempt what opinions or experiences we may have.” - Maddi

Having an Eating Disorder in a bigger body can make seeking support and treatment embarrassing and demoralizing.

“I have an eating disorder. It’s something that I’ve been coming to terms with over the last year or so - it’s a label that I still don’t always feel comfortable with. Don’t get me wrong.  I like labels.  (Okay, maybe I love them.)  They help me sort my life and the things in them into neat little boxes.  They help me explain what I’m going through - they help me find peers and resources to help me.  But this one isolates me. I don’t fit in with the eating disorder community.  My Binge Eating Disorder (BED), while the most common eating disorder, is often not what people think of when they hear ‘eating disorder.’” – Maddi

“I tried to get help years ago but I was laughed at! The woman actually chuckled and said that I just needed to shed some pounds.” – RK

“It took forever for me to tell my parents that I thought I had an Eating Disorder. They looked at me with sarcasm and pity and put me on a diet.” - NB

Our on-going experiences of judgement and the faces of disbelief we live with leads us to avoid accessing resources that we so desperately need. “If you have an Eating Disorder, why do you look like that?” is a question I have been asked more times than I care to count. There comes a point where you give up and stop telling people that you are struggling.

“Why bother doing anything about it [ED]? Its not like anyone will believe me anyway.” – DH

“The public don’t think of bodies like mine [people in bigger bodies with ED]; they don’t think of problems like mine.  They picture emaciated women, not an obese woman just praying to feel better - or to feel anything else. Emaciated women should not be the face of eating disorders. Eating disorders are as varied as their sufferers; did you know that the current Diagnostic and Statistical Manual of Mental Disorders (DSM-5 - the standard for diagnosing mental illnesses) lists eight eating or feeding disorders? Yet, here I am, feeling like an intruder in the community that I need - the very community that I rely on for my recovery. I’m tired of feeling alone, like my symptoms are a personal failing, or like my body makes me less worthy, and I need my community to help with that. Being around others like me has already helped enormously.” – Maddi

When you feel like you don’t belong in the very space that was created for you, it makes supports terrifying. Whether this sense of being an outsider is due to internalized fears, or the design of the actual physical space, entering a place created for supporting people with Eating Disorders can be intimidating in a way that is different from the experience of people who are not living in bigger bodies.

“I know there are places I can go. I know that I can get help. But I can’t go to those places. I’m too ashamed of my body. All these smaller people look like they belong. I don’t even look like I belong in the world. I can’t go. I just can’t” – GH

“I’m too big to go to treatment.” - LJ

Getting through the door of any treatment or support services building is an accomplishment to be proud of for any bodies. You found courage you didn’t even know you had. You took that terrifying step and walked into a space where you are no longer alone. There is a sense of shared experiences. I would like to argue that walking through that door in a bigger body is a unique experience.

“I finally registered for a group and got myself to actually go. I walked in the door and right away I was like, I don’t have an eating disorder. I can’t be so much bigger than everyone here and be sick. I left and never looked back” - TC

“Every week, since January, I’ve been attending a support group for BED. I love that group, and I really care for the people I’ve met in it that have wonderfully supported and inspired me. It is a space where I feel truly accepted and like a part of a community and that has been so incredibly powerful for me. My support group has helped make me more comfortable expressing myself and speaking out about my eating disorder, and even more, they have inspired me to try and learn to accept my body the way it is *right now*. But as soon as I step out of that room and into the rest of the building housing the eating disorder centre, I feel like an imposter. I’m too afraid to join any groups other than the one geared very specifically towards binging. My eating disorder feels less valid because of my weight.” – Maddi

This is not the first person I have encountered that does not feel like they have the right to join groups and programs that could save their lives. The fear of being judged by the very people who are there to offer non-judgement is very real.

“I can’t go there. I’m too fat and everyone will stare at me and think that I am lying.” – BN

I’m way too fat for a support group.” - DE

“I’m petrified of what others in an eating disorders group would think or say about me and my struggle because of the way I look.  Even more, I’ve felt them judging me and my body. After my group last week, I stood outside chatting with someone.  One by one, as the other groups let out, I watched people walk out, with bodies smaller than mine, and nearly every single one looked me up and down - as though questioning why I was even there.  I don’t belong. One of these things is not like the others. One of these bodies is double the others’.” – Maddi

The reality is that the people looking other clients up and down are likely lost in their own thoughts that have absolutely nothing to do with who they are looking at. That does not diminish the fear of feeling like you don’t belong, or the feeling of not looking like anyone else.

“And I’m as guilty as the next person.  I *know* that something gross, dark, and ugly inside me sparks up when I see a body that I deem ‘better’ than mine.  That vitriolic part of me doesn’t trust their struggle.  My most basic, reptilian response is that they are encroaching on *my* space.  My space where my body is okay — not great, but okay.  Where people understand, truly, fully, that it’s not a reflection of my worth or my value. The reality is, they have no idea what it’s like *just trying to live* in a fat body.  But I don’t know what it’s like in their body. That grossness inside of me wants to yell that it’s easier, but I don’t think that’s fair. Maybe I’m imagining the divide, but I doubt it.” – Maddi

“Why can’t there be a place for people like me to be with people who look like me?” – PT

Those of us living in bigger bodies who access services like the incredible groups at Sheena’s Place know intellectually that we are welcome. We know that this space was created for us too. When you live in a world that does everything it can do to make you unacceptable and unwelcome, it is difficult to believe that such a space could possibly exist. That makes getting support and gaining valuable skills really hard. Although personally I have gotten to a place where I join groups based on my needs and no longer look for groups where I think I could encounter bodies like mine, I still find myself caught in the trap of comparisons and of cognitive distortions that insist I am being stared at and judged by the other clients. It takes a great deal of self-love and self-compassion to attend groups at all. It is especially hard when you are living in a bigger body because you are not just challenging your own assumptions about your body, but you are also challenging societal ideals that are backed up by measurable facts about your body. What we have to do is challenge the judgement we impose upon ourselves based on our bodies and societal expectations. “THAT’S THE WORK” – CL

Women in bigger bodies face a unique set of challenges in accessing services and supports for Eating Disorders.

If you are living with an Eating Disorder in a body that is voiceless or silenced, we would love to hear from you. This space is here for you to share and to connect with others who might read your story, or look at your art, and think … I am not alone in this.

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Work published on this blog is property of the writer/artist. Content is edited and approved by the moderator. This blog is not a substitute for medical advice. Please see your health practitioner if you have concerns about yourself or your recovery. 
If you would like to share your stories, writings, and art, please email Kmccarthy@Sheenasplace.org
If you or someone in your life is struggling with an Eating Disorder, you can contact the National Eating Disorder Information Centre (NEDIC) at nedic.ca
For information or to register for groups at Sheena's Place, please visit www.sheenasplace.org

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