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

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