the HAES® files: My Mom Has a Disease

by Health At Every Size® Blog

by Lizabeth Wesely-Casella

My mom has muscular dystrophy. It’s a disease that wastes the muscles and grows increasingly more serious over time. My mom will die with a brain as sharp as a blade but a body that disintegrates on her; her diaphragm losing its strength and her heart slowly losing its ability to pump. She has lost use of the muscles in her legs and her chest and arm areas have withered to the extent that her heart sits at a funky angle. And, as you would expect, this experience has brought with it the exact measure of depression one would assume.

My mom has a disease.

I am fat. I have a big, beautiful, body that does all the things I ask it to, and for that I am very blessed. Just by virtue of the fact that I am in this mother-daughter relationship, I would be clueless if I was not aware of all the things my body can do by comparison, and thoughtless not to acknowledge the privilege of that.

I do not have a disease.

There are many things that get casually conflated when people speak about size and shape related to health. To call my shape a disease when I know what a disease truly does to the body, to the mind and to a family, perks me right up and challenges my ability to remain gracious in conversation – not because I’m ashamed of my mom or of the idea of “disease” or even disability, but because comparing my shape to something that will kill my mother hits a very raw nerve.

But what about the fact that <> my MOM conflates them? Ugh.

Mom, when she was healthy – or should I say physically able – was the same height I am and the standard bearer of what women in my family “should” look like. Never above size XYZ, I was raised to understand that deviating from that standard meant all the negative things we associate with being different than the idealized, Caucasian shape. To this day, mostly housebound, unable to walk unassisted and with all of the other issues impacting her health, she still diets. She believes that a “pouch” on the belly is something to fight against, even in a social circle of 1.

My mom was like many moms, the model of body acceptance (or lack thereof) as I was growing and did the best with what tools she had. She wanted to keep me out of harms’ way; out of the line of fire, and so she taught me to diet and strive for the thin ideal and criticize and hate anything short of that.

This isn’t a mom-bashing article, that’s just a peek into who and how she is.

She smokes like a chimney, drinks, isolates and as you would imagine, has serious bouts of depression and anxiety. Her disease, I believe, contributes significantly to that.

She would be a perfect candidate to embrace the HAES® paradigm, in my opinion, because engaging in healthy behaviors, taking care of her body as best as she can and engaging in self care rather than self denial would improve so much of her mental and physical condition. Not to build it back up, but rather to care for and use wisely, what she has.

I, on the other hand, try to engage in HAES principles whenever possible. For me, proper rest, nourishing myself, loving self-talk and mindfully enjoying movement are essential to keeping myself confident, mentally balanced and happy. I gained so much in my life when I learned about size diversity, studying HAES tenets and engaging in thankfulness rather than self-critical monologues. You see, because my mom was what I modeled, I have been in the shame spiral and depression she is now, only I felt it due to my size and the “understanding” that being fat meant I was sick.

It’s funny to view this from the external perspective and see the hypocrisy of unsolicited opinions in action. The behaviors that some people wouldn’t really mind too much if I engaged in; a little shame here, a little self loathing there, a lot of diet talk and attempts at body change, are the exact behaviors that my mom engages in, but since she’s disabled with muscular dystrophy, they fall all over themselves to assure her that’s misplaced angst. They are the same people that would call my body shape a disease and want me to make those changes, but since her disease is different, by all means she should show herself compassion. Wasting disease = compassion; fat disease = hate the weight off. These people should never put my mom’s dissolving, disabled body in the same column as my fat, healthy and happy one because I do not have a disease.

The fact that I don’t try to change my body but my mother does; that I’m healthy and my mom is not; that’s a whole big bag of unfair. The further fact that she can’t see how self-compassion, self-care and self-love have changed my life for the better and won’t engage in it herself, that’s simply a cruel truth.

I’m going to do what I do, the thing that makes some of the HAES advocates here mad at me, I’m going to continue to try to build that bridge. You see, this is where I get it, the philosophy that you MUST talk to absolutely everyone to tell them what you need or what they don’t know they don’t understand. Not everyone outside our tent is the enemy; some of them just don’t know any better. Many of them are moms.

I’m going to continue to talk to my mom, the person who thinks I’m wrong, that my body is wrong and the fact that I can and do love it is wrong. I’m going to try to bring her slowly into our tent to learn to love the body that’s been on her journey with her, no matter what state it’s in now, because if I don’t, nobody else will. And if I can disagree with my mom while maintaining compassionate and polite pressure on her, I can do it with anyone who disagrees with you and me.

My mom, I forgot to tell you, is stubborn – but I am resolute.

 

LW-CLizabeth Wesely-Casella is an advocate and business consultant. Her work supports binge eating disorder (BED), impulse control disorders and Weight Stigma. As a speaker, she blends science, humor and cultural wisdom to engage her audience, creating a clear understanding of where health disconnects from body shape and that neither impact personal value.

Lizabeth specializes in the prevention of weight bias and mental health stigma through speaking writing and coalition building. She is the founder of the website BingeBehavior.com and her consultancy supports business strategy and event coordination within these communities.

Lizabeth’s weight stigma advocacy has enabled her to speak at the Senate and has allowed her the honor of engaging the White House in efforts to prevent weight bias and stigma in the Let’s Move! program.

Lizabeth is a coalition builder who brings people together to create policy, often from very different viewpoints. Her skills as a respectful leader and thoughtful teammate have built a reputation among her peers as a key individual to work with in the policy arena.

Lizabeth lives in Washington DC with her loving husband and delightfully spoiled dog Noodle.

 

9 Responses to “the HAES® files: My Mom Has a Disease”

  1. What a wonderful post! Lizabeth, I would love to use this post in my new book about weight and health, where many people have contributed first-person narratives about their experiences. Would you email me at harriet at harrietbrown dot com if you’re interested? Many thanks, and thanks for this.

  2. Lizabeth, thank you so much for sharing your story. I too have a mom who continues to struggle with accepting her body, and other’s bodies, in terms of their “fatness”. I was saddened that after a fabulous visit with her two amazing granddaughters this past weekend (who she hasn’t seen in several years) her first comment to me when I asked about their visit was to say that one of the girls “looked like she had gained weight”. SIGH. A week or so ago, she told me when I asked, that she hadn’t eaten her lunch because “they” told her that if she wanted to lose weight, she should leave half of everything on her plate. DOUBLE SIGH. And like you, Lizabeth, I am resolute in providing her with the HAES® viewpoint at every opportunity, even though at almost 90 I am well aware that she is unlikely to shift her perspective.

  3. Thank you all for the comments – I am touched and supported that each of you left a message. We love and protect and laugh with and cry for and disagree with those we love – and we can honor them by being the best people we are; that they helped us become in whatever ways they contributed.

    I’m struggling with the line of encouragement vs. demanding and she’s shut me out pretty much because she feels threatened over losing her independence. I’m thankful I have people to share this with, who understand that EVERYONE in this scenario is trying to do their best and we’re all vulnerable to doing it totally wrong.

  4. Wow–what an essay! This is one of the best refutations I have ever read of the “fat is a disease” mentality. Anyway, my beloved mom struggled at times to keep her “girlish figure” after we two boys were born. However, her fatphobic behavior was mostly directed at the girls and women I would bring home, one of which I married. OK, more than one. People with these culturally-ingrained attitudes usually keep them until their dying day. It is hard to deal with a critically-ill parent, and Lizabeth, my heart goes out to you for what you (and your mom) are going through.

  5. Beautiful, vulnerable, amazing work- and right on. Fantastic. Thank you!!

  6. I loved reading this, Lizabeth, and I can relate to your experience as a daughter of someone who had a neurodegenerative muscular disease. One of the only good things to come out of my father’s short battle with his disease was his immediate abrogation of following the Atkins diet. In fact, on the occasion that I served him a dinner full of carbohydrates when he was telling me about his diagnosis, it was the first time I’d ever heard my father use the “F” word in relation to the restrictive diet he’d been on for so long. That felt like a miracle in itself. I hope your Mom comes to realize what’s truly important in life, but I also understand the allure of maintaining a facade of control, especially when faced with one’s fragility and mortality in such a stark way. Hugs and love to you.

  7. I also nursed my mother through her last years of a neurodegenerative muscular disease. It’s a tough thing. My mother was also image-obsessed and had a hard time letting that go. And yep, she gave me a hard time over my size for many years.

    As the commenter above noted, this fixation on her weight or appearance may be the only thing she feels she has control over anymore. Or it may be so central to her self-concept that she can’t let it go, even as she is dying. And that may never change.

    We have to find the strength to forgive our parents for their foibles and weaknesses. Doesn’t mean they get to continue to be unkind or derisive to us about our size; we never have to tolerate that. Nor do we have to like or accept these less-than-sterling qualities. But while we can decry these qualities, ultimately it is very freeing to find it in yourself to understand that they are flawed people, as we are, and to let go and forgive them for these flaws. This is not a quick or easy process, mind, but in time you may be able to make some peace with it. We wish differently for them, but ultimately this is who they are/were and we accept that.

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