In December 2021 I was diagnosed with a rare disease called Indolent Systemic Mastocytosis. The diagnosis was a culmination of a multitude of symptoms seemingly no doctor could explain, but which caused me significant irritation and distress day to day… for years.
When I learned I had a chronic disease with no cure I felt both relief and grief. I went through all the stages of grief defined by psychologists Elisabeth Kubler-Ross and David Kessler: denial, anger, bargaining, depression, and acceptance.
This blog is an exploration of my journey with my body, and how I found acceptance and grace to be in my body as I live with, but am not defined by chronic disease. Writing this was part therapeutic process, and part an act of normalizing the challenges of living with a chronic condition or disease. I hope you see something for yourself in my words.
My contentious relationship with my body began young.
From a very young age, my body and I were enemies. Informed by the diet culture around me and triggered by the bullies on the school ground, I enacted a battle on my body. I viewed her as something to fix, change or alter. It was my mission.
The driving motivation? If I just changed my body, I would be loved. I would belong (or so I thought).
This battle with my body took me on a long and winding journey that included an eating disorder, and an Ironman. It ultimately is what led me to a degree in Kinesiology, and a career as a Personal Trainer. And graciously, it led me to therapy and a pathway to healing that included self-compassion and redefining my relationship with health.
But my healing had really just begun.
I thought I was through it. I thought I’d confronted my internalized sizeism and diet culture mentality. I thought I’d found freedom and peace in my body. And I had, sort of.
But this diagnosis helped me realize that my peace was conditional.
I was willing to accept my body as it was – its shape, size, ability, and health. But when that changed… a floodlight was shone on my internalized sizeism, and healthism. And as much as I didn’t like it, examining it has led to a whole new level of body acceptance and peace.
Before I begin, some definitions:
Healthism is a term that was defined in 1980 by Robert Crawford as “the preoccupation with personal health as a primary focus for the definition and achievement of well-being; a goal which is to be attained primarily through the modification of lifestyles.”
Sizeism as defined by Fat Activist Aubrey Gordon is “discrimination or prejudice directed against people because of their size and especially because of their weight.”
My body betrays me.
Or at least that’s how I felt.
I was living what most people would characterize as a really “healthy lifestyle.” I practiced gentle nutrition, I moved regularly, and I had a reasonably respectful “balance” between work, play, and family, given that I am a self-employed mom of two busy boys.
But I still struggled with persistent gut issues and nausea, headaches, and treatment-resistant acid reflux nobody could explain given my “healthy lifestyle.”
Then on August 27, 2019, I was stung by a wasp. The sting triggered anaphylaxis and resulted in a severe (and terrifying) drop in blood pressure. Fortunately, I received medical intervention in time.
At the hospital, my recovery was monitored, and received a prescription for not one but two Epipens that I was instructed to pick up before I was discharged and then keep with me at all times. Plus a recommendation to be seen by an allergist.
Several months later, I had a consultation with my allergist. Upon hearing my story she sent me for bloodwork including screening for “tryptase” levels. When I asked her what it was, she said, “we’ll talk about it if it comes back positive.”
It came back positive.
Of course, I’d already Googled it.
Tryptase is an enzyme marker for a disease called Mastocystosis. And if you Google it, the results would scare anyone. While there are milder forms of the disease, of course, this is not the information your brain hones in on when you’re using Dr. Google.
She confirmed what I’d read, that this explained my headaches, nausea, gut issues, and reflux and that I’d need to consult with a Hematologist for confirmation and to determine which type I had.
I was terrified. None of the options had a cure. All of them involved ongoing medical care, invasive tests like bone marrow biopsies, and daily medication for symptom management. And the worst-case scenario (thanks catastrophizing brain) was aggressive and came with a 3-5 year life expectancy.
Enter grief (act 1).
I don’t use this word lightly. In my graduate studies in Counselling Psychology there is an acknowledgment that while grief is more commonly associated with the loss of a loved one, it can also refer to the loss of the life you knew. This happens when we go through the chapter changes of life, such as when facing a diagnosis that will forever change your life.
This was one such time.
And the roller coaster began. Folks don’t talk enough about how much of a roller coaster grief is. Denial, anger, bargaining, depression, and acceptance. But it’s not a step-by-step process, it’s disorderly and chaotic. And exhausting.
The thoughts of “what if I have the scary version?” were pervasive. I practiced self-compassion. I talked to dear friends and loved ones. I leaned on my supports. I walked. I dipped. And I did my best to navigate my way to acceptance while still holding by a thread of hope that I’d be a lucky one…one with the least scary form.
Time trucked on. I awaited more assessment and insight about my suspected Mastocytosis. Due to the pandemic, it took a while to see a Hematologist. Before I saw him I completed his requested testing, including an ultrasound of my spleen and liver (two organs that are often involved). Which led to words no one ever wants to hear (and most certainly not in a pandemic).
We found a mass on your liver.
“We’d like to send you for an MRI. Get a better picture of what it might be,” said my GP.
I was in for my MRI way too quickly. Having waited for an MRI for months on my ankle several years ago, the speed at which I got an MRI was both a relief and terrifying. Well, this can’t be good (oh, hey, catastrophizing brain). I did my best to take it all one step at a time. To not get ahead of what we know to be true.
MRI day came and step by step I was going through the motions. Breathe. You can do hard things. Don’t get ahead of yourself. The tech began his pre-procedure schpiel explaining what would happen.
He told me they’d take some pictures, then they’d inject contrast dye and take more pictures.
Contrast die…contrast die…my brain scanned.
I recalled reading something about how Masto patients were at high risk of anaphylaxis with contrast dye. I felt the panic wash over my body. No, no, no. I cannot go through that again. I realized my Epipens were in the locker I’d been provided for the procedure. It was just me and my gown staring at him in terror.
I took a deep breath and told him I had Mastocytosis. What happened next was the first of something that is completely familiar to me now.
A blank stare.
I was expecting his concern to match my panic. No dice. He casually said, “ok.”
What I’ve come to know is that most medical professionals have never heard of this rare disease. And if they have heard of it, they don’t really know what it is, or what to do about it. This means I’ve had to become an expert on my own disease and my own advocate (more on that later).
Uncertain he understood the potential risks of the situation, I explained what it was, as best as I could at that point, and requested he was prepared with epinephrine. And then did my best to not have a panic attack in the very small, very loud MRI machine when he injected the dye.
I was ok. And, as it turned out, so was my liver. It was a benign hemangioma (group of blood vessels). Likely something I’d had since birth. Phew and also, can I get off this R-O-L-L-E-R-C-O-A-S-T-E-R?!
I finally see the Hematologist.
…and he dismissed my case. He explained that because my spleen and liver were “clean,” and he didn’t think I had the cutaneous signs (my allergist and I both believed I did), in spite of my elevated tryptase he didn’t think I had it. Diagnosis requires a set of criteria, and in his professional opinion, I didn’t meet them. I asked him why my tryptase might be elevated. He shrugged his shoulders and said, “I dunno.”
I dunno. Hmm. I knew I should feel relieved, but I didn’t. I felt unsupported, unseen, and frustrated.
My body knew. My intuition knew. This wasn’t the end of the story.
But wait, there’s more!
During this time, my body also entered peri-menopause hard and fast. I was having 20-30 hot flashes a day. Add to the ongoing symptoms of acid reflux, chronic stomach issues, gut distress, nausea, and headaches, and I felt a bit like a hot mess.
Premature ovarian insufficiency was the formal diagnosis (thanks to a trip to the Gynecologist (yes, yet another specialist in the mix). Essentially my ovaries had called it quits and were no longer producing sufficient estrogen, “putting me at higher risk of heart disease and osteoporosis,” informed my gynecologist.
Based on my hormonal levels she wanted to put me on hormone replacement therapy (HRT). This is common practice in premature ovarian insufficiency.
I began HRT.
At first, it was delightful. Hot flashes, gone. Night sweats, gone. Sleep, like a baby. I even got a period.
I assumed this was great news…but then it never went away. Within 4 months I was bleeding or spotting nonstop and my breasts were so sore I couldn’t walk up and down stairs without excruciating pain. It felt like I was breastfeeding again and I was engorged with milk, but there was no milk, just swollen tisue, so there was no relief.
I consulted my gynecologist. Based on my symptoms, she suspected my ovaries must have “kicked back in.”
OMG, they do that?!
What the actual f*ck, body?! What is happening? I felt like my body was LEGIT falling apart. It felt like I had a new issue each week. And with each new issue, the adversarial relationship I’d had with my body at the peak of my eating disorder (ED) was becoming stronger.
Am I imagining all these issues? Am I just a hypochondriac? (denial). WHY me?! WHAT THE H*LL? (anger). Maybe if I just… (bargaining). I guess this is it. This is my life now. Awesome (depression with a special flare of resentment).
But wait, there’s even more.
Between March and July 2021 my body changed. Significantly. I gained approximately 40lbs (approximately because I don’t typically weigh myself on principle, but eventually did on account of none of my clothes fitting and feeling perplexed).
Part of what was perplexing is that I hadn’t really changed anything. I was still actively hiking, teaching 3 zoom classes a week, and swimming 2x per week, and my approach to eating was the same. I was doing all the “right” things. Wasn’t I? I even looked back at my Apple Watch data to see if I was gaslighting myself. I wasn’t.
So, using my own tools, I got to the work.
I generally accepted that my body was just doing what she needed to do, while also consulting with my doctor just to ensure nothing (more) nefarious was at the root of this rapid change. This resulted in a visit to an endocrinologist (yup, one more specialist in the mix). When I finally saw them months later, they also were perplexed, it didn’t add up.
Gaslit by my doctor.
In a rather unpleasant interaction, grounded in assumptions, sizeism, and healthism, the endocrinologist looked at my labs and couldn’t explain anything either. She even went as far as to suggest I was exaggerating the rapid weight gain.
“Are you sure it happened that quickly? Are you sure your diet hasn’t changed?”
Yes, I am.
Without even asking about my current activity level, she suggested I increase my activity and eat a “Mediterranean diet” (one of the faves suggested by docs these days that is essentially just making sure you eat primarily plant-based with an emphasis on healthy fats and moderate amounts of lean poultry, fish, seafood, dairy, and eggs).
Yeah. Essentially how I eat.
Walking away from their office I again felt unsupported, unseen, and frustrated.
Realizing that there was no medically understood reason for the change in my body, and trusting my body knew what she was doing, I bought new clothes, and carried on.
Sort of. It’s one thing to go through the motions of body respect, it’s another to really land there.
Confronting my internalized healthism and sizeism.
As I said earlier. I thought I’d dealt with this. And I had, conditionally.
I had accepted my body as it was. But this was new.
I’d now experienced the gaslighting of our sizeist medical system. I was now not able to shop at some stores, not all chairs were comfortable, and that little judgmental asshole in my head? She was a noisy b*tch.
As the pandemic settled and the world opened up, I found myself feeling timid about seeing people again. When I did find my brave and go out, sometimes my biggest fears of their judgments were validated as they looked up and down at my body.
No one said anything, but their eyes and expression said it all.
I found myself explaining my body like it needed to be validated for just being (sizeism). I also found myself going out of my way to share how active I was or how healthy I ate (healthism).
And all of this made me take another look at my internalized healthism and sizeism.
I got real (with me).
It wasn’t easy.
I showed up (for myself) and did the work. I talked to a body image coach and a therapist, as well as close friends. I intentionally took pictures and videos of myself in this body, right now, and looked at them. I noticed my internalized judgments and challenged them.
Have I mentioned it wasn’t easy?
Slowly I found my way to more body acceptance in my new body. This is still a work in progress, something I think we should talk about more, body acceptance is a practice.
In the meantime…
In the spring of 2021, I developed pitting edema.
If you’re not familiar with pitting edema, it’s the retention of water in the tissues that results in swelling and tissue that doesn’t “bounce back” when you touch it (aka, I could press down on my lower legs and the finger indent would stay for a few minutes).
Enter a whole slew of tests to rule out one of the primary causes of pitting edema – congestive heart failure.
They were negative (thank goodness). But there I was on the diagnostic R-O-L-L-E-R-C-O-A-S-T-E-R again. Trying to settle my catastrophizing brain and still do all the things (because life doesn’t stop just because you might be really sick).
Becoming my own advocate.
Growing upon my experience with the MRI tech, I began to recognize that the answer to my medical mystery was likely not in one specialist. Talking with my gynecologist one day about my array of bodily issues and symptoms, I joked that I needed Dr. House (from the TV show). She responded that the medical system doesn’t have doctors like him, and in many cases, medicine has become so specialized that you need a doctor for your big toe.
We laughed at the ludicrosity. But the inherent truth in the joke made me feel sad. She’s not wrong. And while I’d love to see that change, in the meantime I had a mystery to solve.
I joined Facebook support groups for folks with Mastocytosis, and started doing my own research. I found a medical journal that talked about edema being a rare symptom of Mastocytosis.
My allergist and I agreed I should get a second opinion.
I first spoke to my new hematologist in early December 2021. Two days later he got me in for a bone marrow biopsy (required for conclusive diagnosis), and by the 20th of the same month, I had a diagnosis: Indolent Systemic Mastocytosis with Kit Mutation and 5% involvement of bone marrow.
Over the phone, he told me, “there is no evidence of cancer at this time, but ongoing assessment is required.”
What does that mean?
Ultimately it means my body overproduces Mast cells. Exactly why the body does this, they’re not entirely sure, but they think it’s related to a mutation of the Kit gene).
Because Mast cells are involved in the allergic response, the excess means my body is in a chronic state of allergic response. And in my case the “systemic” part means it is impacting multiple organ systems (skin, bone marrow, GI tract, vascular). Which is what causes all my symptoms. If you want to dork out you can learn more here.
Relief, then grief.
At first, it was an overwhelming wave of relief. An answer, finally! And, yay, I don’t have an aggressive form!
Then I began to really research (via credible sites).
The reality was this was going to be tricky to manage. Because it’s a rare disease and not well understood, treatment is essentially trial and error. I would need to see both my hematologist and allergist two times per year each to work on managing my treatment regimen and monitor the progression of the disease.
Yeah. There is a 3-5% chance my disease will progress to the scary one. The life-ending one. That’s news no one ever wants to get. Like a weird ticking time bomb living in your body.
Very quickly grief (Act 2) arrived.
Going through the stages is not linear, nor is it really ever over. As they often say in therapy circles, you tend to grow around grief. It’s always with you.
Denial was immediate. No! They must have made a mistake. Then anger. Anger has been pretty constant for me, mixed with a fantasy of a mistake (denial) for good measure.
Of course, bargaining showed up too, a lot. Ok. I just have to take these meds and then, I’ll be fixed. Nope.
This is one of the many challenges of this disease. Medically, while the science around it is growing, there simply isn’t a concrete understanding of the disease nor a medical solution. There is no cure. Treatment is symptom management and monitoring of progression.
So I approached it the way I approach most things…
Let’s make a plan.
I researched. I looked at all the angles. And I immediately got to work with a zesty combination of determination and hope. I decided I would work with my allergist to explore drug interventions, and a dietitian I’d found who had expertise in this arena to explore nutritional changes.
The journey through all the interventions can best be described as a frustrating mix of short-lived hope, bargaining, denial, anger, deflation, and disappointment.
Enter the low histamine diet (wait, what?!).
I know, you must think I’m off my rocker.
YES, I’m a Certified Intuitive Eating Counsellor. YES, I don’t do diet culture. But that doesn’t mean I’m against nutritional changes that support health.
I support Authentic Health. Which is the dynamic integration of each individuals inner attunement and external health values. And for me, at this juncture, exploring things like dietary changes that were relevant, somewhat evidence-based, and not arbitrary that could potentially affect a change in my bodily experience (inner attunement), was absolutely in keeping with my external health values.
Also, I believe in autonomy and respect, so frankly if a weird, restrictive dietary intervention helped me be symptom-free and feel well? I was open to it. My body, my choice.
And, I was committed to doing what worked for my body in the kindest way possible.
But why is nutrition even part of this conversation?!
The background…one of the goals of treatment is to reduce your exposure to allergens.
This includes environmental allergens like insect venom, dust, mold, scents, and of course foods. And reducing your exposure to these allergens reduces your body’s histamine response to said allergens thus reducing your mast cell load and symptoms (that’s the simplified cole’s notes version).
This made sense to my scientific brain.
But I didn’t have any true food allergies.
While I was diagnosed with Celiac Disease several years ago, and milk intolerant many, many years ago, I didn’t have any legit food allergies. The typical advice given to masto patients is to avoid food allergens. Period.
But there are also masto folks that have found that eating a “low histamine diet” reduces their symptoms.
This is more in keeping with food intolerances and the idea that some foods don’t work for all people. Given my milk intolerance, I inherently “got” this idea, and was curious to explore it.
I was hesitant, and hopeful/ desparate.
While I was hesitant to engage in a restrictive diet, I was also a little bit desparate to reclaim some control in a situation I felt so out of control in. Which was also a huge red flag for me. Because controlling my body was a big part of my eating disorder (ED) and I didn’t want to go there again.
I was also hopeful. I really wanted an answer.
So, I sought out help. I found a Dietitian who was grounded in Health at Every Size, Intuitive Eating and had experience with both ED and histamine intolerance. She was willing to be my guide and support system as I navigated nutritional intervention and my lifeline out if it went sideways.
Feeling fully supported, she and I got to work exploring. I started by keeping a food log to highlight which foods might be a problem. The act of logging my food again for the first time in many years was triggering my ED thoughts, so we stopped.
Then we then did a trial. She guided me to eliminate the highest histamine foods for a week, then we slowly and methodically re-introduced them and I noticed my symptoms. This was less triggering. And enlightening.
Thank goodness for Intuitive Eating!
Thanks to my training and experience with Intuitive Eating I was able to tune into my body and notice my response to foods. I was able to identify certain foods that do indeed trigger my masto symptoms. Paired with my knowledge of Authentic Health, I now avoid those foods, without being too rigid about it, which is a trigger for my ED.
When I’m presented with an opportunity to eat them, I make a choice, can I manage a flare of my symptoms (usually a multi-day headache, nausea, increased edema, and GI distress)? If the answer is no, I skip it. It’s a simple cost-benefit analysis.
The challenge is that while I identified foods that sometimes cause a flare, it’s not conclusive. Likely because it all depends on what other (unknown) factors have potentially increased my histamine load and mast cell response. In other words, if I’m already slightly triggered (for reasons unbeknownst to me), these foods are the straw that breaks the proverbial camel’s back.
It’s a bit of a precarious and slightly blind negotiation.
While there are a few foods that cause flares, the end result of my trial with dietary interventions was that ultimately, food/ lifestyle isn’t a big one for me. Which should have been a relief. It wasn’t.
What was interesting to note was the desperation I mentioned. I so badly wanted this dietary intervention to be the answer. This flagged something even more important than which foods triggered me, it highlighted my internalized healthism. I still really believed deep down that I could control this. That I could control my body. And that was something I knew I needed to explore (more to come on this thread…keep reading). But first…
I didn’t stop there. Because I was going to hit this disease with a 1-2-punch of alternative and traditional medicine.
Meds, meds, and more meds.
My allergist and I got to work trying different cocktails of meds. Going in I had this naive hope that once I had my diagnosis we’d just slap me on some special meds and bada bing bada boom, I’d be better.
It’s not that simple (of course it’s not).
Mastocytosis is a complex and not well-understood disease, in particular, because it presents very differently in every patient. And thus treatment also varies from patient to patient. At this point, we’ve been through 4 different iterations of drug regimens (at less than 1 year into treatment).
My current regimen includes maximum doses of antihistamines (two kinds) to lower my histamine load (and theoretically reduce the number of mast cells), meds to control my acid reflux, a diuretic to manage my edema, and a mast cell stabilizer to minimize the gut distress. I take multiple pills 4x per day.
Sadly, they’re all bandaids. And not the good kind. Think dollar store quality at luxury-brand prices (thank goodness for extended medical). And I still live with chronic headaches (most days, some worse than others), nausea, edema, reflux, and GI distress.
Don’t forget the monthly shots of venom!
My treatment also includes ongoing desensitization from my two known allergens (White Faced Hornet and Yellowjacket). Initially, this protocol involved weekly shots at my allergist’s office in Victoria. But since we started this treatment prior to my diagnosis it means I’m now 2 years into treatment and can extend the time between shots to 6 weeks. And (drumroll), at the three-year mark this can move to every 8 weeks! Woot woot!
But that’s as good as it gets and I’ll need to maintain that schedule for the remainder of my life. Which sounds like a hassle. But due to the mastocytosis, my anaphylaxis results in a potentially lethal drop in blood pressure, and this desensitization means I can be outdoors in the summer without the fear that one sting will end my life. Which sounds dramatic, but it’s my reality.
Even though I’m desensitized to white-faced hornets and yellowjackets, there is always the chance that something else will trigger anaphylaxis. So I carry not one, but two EpiPens with me at all times (thank goodness fanny packs are back!). Having this life-saving medicine with me helps a lot, but it’s not a failsafe, something I try not to think about otherwise I’d be gripped by fear and stress.
Hope for a cure and a little real talk.
There is a treatment in drug trials right now (not in Canada) that treats the issue at the level of the kit mutation I have. It is promising. I hold hope.
And in the meantime, I try to manage my expectations and meet my body with respect day to day.
Some days I feel great, others I don’t. And sometimes I don’t know why. The unknown is tough, but I do my best to carry on and live with, rather than feel constrained by my symptoms.
That said, there are recurrent “this isn’t fair” thoughts, that occasionally become verbalized. And often echoed by others when I tell them my story. It feels validating, but also frustrating and reinforcing. They’re right! This isn’t fair! Why me?! The undercurrent to my anger can quickly metastasize to “why is my body betraying me? I’m so healthy!”
So I’m doing my best to grow around my grief. Which has also meant some deep work.
Staring healthism and sizeism in the face.
As much as I thought embraced a health at every size philosophy, the surprise changes to my body, and the ISM diagnosis, had me realize I wasn’t really as “weight-neutral” and nonjudgmental as I thought.
Sadly, I was still pretty (unknowingly) entrenched in the notion that your health is mostly in your control (in spite of the multitudes of evidence I’d read in my Intuitive Eating training that counter that healthist belief). To give credit where it’s due, I’d definitely given up the “it’s your moral imperative” bit of healthism, but even though I knew there was a multitude of factors that impact health, many of which are not in your control, I still clung to the belief that I could impact my health through my behaviours and actions. Maybe if I just ate a certain way…that’d work?! I just need to manipulate this set of factors and…
I was clinging to this control in an uncontrollable world, in an uncontrollable situation.
And facing that. Was no joke.
Oh hey universe, well played. I get it now. Truce?!
The culmination of all of these “failures of body” as I viewed them, and the failure of my interventions to fix said problem, meant that a floodlight was shone on the adversarial relationship (me vs. body) I thought I’d healed.
I had to acknowledge my intense anger with my body.
It didn’t make sense. Why me? Why now? What was the reason for this?!
But as Kate Bowler beautifully says “everything happens
for a reason,” and there’s “no cure for being human.” (PS. her books of those titles are both extraordinary and were helpful books in this particular journey)
I had to really look at my need to control. Everything.
It took time, support, honest reflection, and a winding journey through the stages of grief (denial, anger, bargaining, depression, and acceptance). I had to look at my need to control, and what was behind that intense desire.
Slowly, I’ve come back to my body. Back into my body. With gratitude for all she is, and all she (still) enables me to do. And I’ve found a deeper level of trust for the unfolding of life, and my ability to be with what is (whatever it is).
Here’s what I’ve come to know.
Your health is not a gold star for a life well lived.
We’ve been led to believe health is something you earn. But health, and life, it’s just not that simple. It’s multifactorial and frankly, when it comes to bodies, we don’t know much. The science of bodies is relatively new, so there’s no bulletproof way to get through this thing called life unscathed. So just meet yourself where you’re at every day. And repeat.
You can live a “healthy lifestyle,” and still get sick, possibly even die.
That may sound morbid. But it’s honest, and I think it’s liberating. Because in a deep twist of irony, it’s the pressure we put on ourselves because we believe that our health is our responsibility – that is quite possibly the most unhealthy (mentally or physically). So take yourself out of the pressure cooker. Relax. Lifestyle isn’t the end all be all. Sure, it contributes, do what you can to eat in a way that serves you, move regularly, rest well and support your mental, emotional, and spiritual health, but don’t hang your hat on it. There are no gold stars. Bodies aren’t machines. And there’s no algorithm to hack.
Sizeism lives within all of us
All the isms do. Because our thoughts and beliefs are influenced by the culture we’re immersed in, and frankly, it’s a pretty biased and marginalizing place. There’s a quote by the late Indian Spiritual Teacher Krishnamurti. “You think you’re thinking your thoughts. You are not. You are thinking the culture’s thoughts.” ((read that again)). Yeah, I know. But here’s the thing, once we know that, we can assume we have bias and judgment, and proactively take steps to challenge it.
Body liberation – it’s not static.
Body acceptance is not a place you “get to” and live. Because nothing about humans is static. By our very nature, we’re constantly in flux. Cells are dying and being created every single second! I mean, how cool is that?! And frustrating? And unimaginable. Our relationship with our bodies is also constantly in flux. Some days we’ll feel content and peaceful in our bodies, other days hatred or even disgust may show up (refer back to the culture’s thoughts for the origination of these unhelpful thoughts). But here’s the thing, knowing these not-so-great moments are just moments…can truly make all the difference. Because once we accept that, we can call them for what they are (internalized sizeism or judgment), stop judging ourselves for thinking them, and get to the way more important work of challenging them and advocating for a different cultural narrative.
You’ll get further if you view your body as an ally (not an adversary).
Hating on your body won’t get you far. I know there are like a zillion memes that would argue with me on that, but it’s been my experience that hate isn’t productive. It’s not motivating and it most certainly doesn’t help you meet your body with grace. I may not appreciate or even understand every experience I’m having with my body, but I can meet her with respect. Body respect is the home base of true health – body, mind, and spirit.
You’ll get further if you view your body as integral to your experience of the world.
Stop viewing your body as this separate part of you to be conquered, and begin to view your body as integral to your experience in this world. Meet your body with kindness, and possibly even gratitude for the incredible experiences you can have within and because of her. You are your own best expert when it comes to your body if you can land in and listen to her. The practice of embodiment enables you to tune into your unique needs and respond with respect, kindness, and your best interests at heart.
Your health is not a wild horse to lasso, nor is your life.
For me, the desire to control my body is reflective of a desire to feel in control of my environment and life. This has roots (for me) in the trauma I experienced as a child. I’ve only recently been able to name that. Trauma is a big word. But what I’ve come to realize through my own therapy and my graduate studies in Counselling Psychology is that living in a marginalized body means you face micro-aggressions (judgments of others based on your body, bullying, side-eye when you eat, move, and just be in your body). For me, this was a daily occurrence. And this trauma manifests in a desire to control what I can in my life. When I was a teen, fuelled by the narrative that my body is a problem to be solved, it was an eating disorder. And while I have and continue to do the work to heal (ED recovery is life-long), I’ve come to realize that this need for control is still manifest in my life, in more areas than just my body. And that will also be a lifelong recovery. The patterns we have in one area of our lives are rarely in just one area of our life. And looking at that truth is deep, gutwrenching, difficult, powerful, and empowering work.
(TLDR) What I hope you take from this blog.
I get it this was long. So if you’ve scrolled to the bottom to get the coles notes, this is it.
Living with a chronic health condition or disease is challenging, confronting, and also an opportunity for insight. While I’d never choose it, and won’t suggest I’m glad for it, it has offered me some insights into my own humanity that I am grateful for. The process of grief and what it feels like to grow around (not in spite of) our challenges. A deeper and more profound sense of empathy for the experience of body judgment, sizeism, and healthism. And a deeper knowledge of the vital role embodiment has in the practice of Authentic Health.
Bodies are complicated. Health is complicated. But respect is relatively simple. Listen to your body. Honour your body. Respect your body. Moment by moment. Day by day. Year by year. Because your needs and desires will evolve in ways you can’t even (and may not want to) imagine. But if you tune in, they’ll make themselves known. And that’s a gift. Because being known, seen, and accepted for all you are as you are is powerful.