It hasn’t always been clear to me what my overall ‘project’ is. I’ve written about all kinds of things: family, disability, special education, pediatric rehab, advocacy, parenting, death, grief. When my work took an academic turn I wrote about bioethics, patient-centred care, patient engagement. I suppose there’s one trajectory that’s easy to trace: I write about things I experience and things I think about. Over time perhaps the scope has gotten broader and the analysis more critical.
But if I sharpen my focus and look a little deeper, I think what I’ve really been documenting are the encounters and experiences in healthcare that reveal themselves to be something far more than they seem. For example, in No Ordinary Boy I wrote about how my disabled son Owen’s preschool seemed to be a hive of fun and productivity, but was actually an assembly line of hustling children from activity to activity. I wrote about our investigation into deep brain stimulation (DBS), discovering that my own impression of our clinical meetings was vastly different from the physician’s. I lamented how, when Owen was diagnosed with severe hearing loss, we were presented only with cochlear implant as an option, despite my inquiries about sign language and communication therapy. As I eventually moved away from telling only personal anecdotes, I wrote about how the institutional practice of engaging patients ‘as partners’ could be viewed as a cynical manipulation of patients’ concerns and goodwill. And how ‘patient-centred care’ obfuscates how little choice and autonomy patients actually have. Despite assurances about patients being in the driver’s seat of their own care, healthcare and its institutions carefully contrive what they want us to think and do.
Fast forward to today, when I primarily think about systems, structures, environments. I haven’t blogged about personal matters since Owen died 8 years ago. But a recent personal healthcare experience brings me back to familiar territory, and I feel compelled to write about it: I was diagnosed with type-2 diabetes.
First, the summary: I received the diagnosis at the end of October 2018 and was essentially sentenced to a life with a ‘progressive, chronic disease’. But I rejected it and chose a different path. Over the last 4 months I’ve lost 30 pounds (and counting) and my bloodwork has returned to normal. There is some disagreement as to whether I can say I reversed the diabetes, or I treated it, or I am now simply properly managing it. But no matter – if tested today there would be no sign of it. I changed everything about how I eat and exercise. And I did this despite having a much easier path laid out before me: accept the diagnosis, take the meds, learn to live with the condition.
These are the plain facts and I’m really proud of my hard work. And extra pleased that it paid off. Or more accurately, extra pleased that science seems to work after all. But this hasn’t been a simple journey. I have been confronting some very old and insidious body image demons which I suspect will be remain with me for a long time. And I find myself asking uncomfortable questions, some of which make sense to talk about here.
How did I get here?
I have been a reasonably healthy weight most of my adult life except the last, say, 6 years during which I have been steadily gaining weight. No surprise, really. Not enough movement, mindless eating, poor food choices. And the more weight I gained, the less inclined I felt to do anything about it. For some of that time I had been swimming several times a week, which gave me comfort that I was doing enough. I’m 48, after all – maybe I just needed to accept that I was getting older and softer. This acceptance was conceptually aligned with a stance I’ve held for a long time, which says that how I look is nobody’s business but my own. And lucky me, I didn’t care how I looked! Or that’s what I would have said. In hindsight, it might be more accurate to say I didn’t care *to know* how I looked. I never looked in the mirror. I didn’t take care of my clothes. I wore the most concealing and probably unflattering clothes I could get away with. I resented buying what I thought of as ‘middle-aged lady clothes’ but also knew that only with generous and flowing cuts could I still fit a stretchy size 12 or 14.
So on one hand it’s not surprising that I was surprised by the diagnosis. On the other hand, there were all kinds of other clues something wasn’t right. I had been feeling lethargic. I would need a nap almost every day after lunch. My skin was getting blotchy and itchy. My periods were increasingly heavy and unpleasant. I felt winded going up stairs and I struggled to get out of bed. I was eating really terribly – mostly bread, cheese, eggs. Rarely a vegetable in sight. Yet, as I huffed and puffed with even the most basic activity, it never occurred to me that my weight was a problem. I imagined thyroid, or iron, or maybe a vitamin deficiency. I should maybe stretch more, I would think.
Why did I not feel a sense of urgency to change things?
Even when my initial fasting blood glucose tests came back very high – around 8.0 at 2 different times (normal is 5.5 or less) – I didn’t take it seriously. When my doctor made some lifestyle suggestions of the ‘move more eat less’ variety, I’m sure I was only half listening. There’s something about the words ‘diet and exercise’ that sound preachy and old-fashioned. It’s far more acceptable to talk about body positivity, to rally against weight-related stigma, to say vague things like ‘health is all that matters, not size.’
In my Facebook and Instagram feeds I am aggressively marketed to by women’s online clothing retailers, the majority of which have models of all shapes and sizes. Fitness wear and exercise gear companies showcase sometimes very large women demonstrating amazing flexibility, strength, and stamina. I support this trend of course – people of all sizes should have access to the same products and services without discrimination or stigma – and I’m frankly surprised it’s taken capitalism this long to figure out how to increase its customer base in this way. And, for better or worse, the constant exposure has normalized size variations. Or maybe it has dispensed with notions of normal. Or perhaps we have simply arrived at a new normal: everyone is bigger now. So my size alone was not enough to alert me to the very real health risks that exist for larger people. And the results of the blood glucose test, triggering talk of ‘diet and exercise’, felt like something to rebel against.
I’ve reflected a lot on why my doctor didn’t look me in the eye and tell me to get my shit together after the first round of bloodwork that showed elevated glucose levels. It didn’t go down quite like that but I think in hindsight she did. Kind of. In her way. I have no doubt she said far more than I remember now, but I do recall certain sentence fragments – this is common for women my age, modern lifestyles are difficult to manage, we generally don’t eat right. I had even written down on one of the lab reports: “above the ground vegetables”, “leafy greens”, “brisk walks”, “if walking only, at least 3 miles a day.” Obviously these were things she had told me to do. It was a prescription of sorts, but hardly one to get excited about, or one that I wouldn’t have guessed, or one that I would take seriously. It was what any reasonable person would say on any given day about what any person should do. It was boring and irritating. Nevertheless, for the next few months I did indeed walk a bit more, cut out junk food, and ate a salad every other day or so. But it wasn’t enough.
Why has diabetes come to be seen as a medical problem instead of a lifestyle one?
I didn’t panic until that appointment in late October. The bloodwork showed diabetes – not risk for diabetes, not pre-diabetes. Actual legit diabetes. No getting around it. My meagre lifestyle changes had not made a dent in the results. The doctor was sympathetic as she went into her oft-repeated monologue about what happens next: let’s get those glucose levels down. Start Metformin, come in every 3 months to repeat the bloodwork, see if it’s working. Go for nutrition counselling. This is going to be a new way of life.
I remember a flood of emotions coming over me, partly because one of the tasks was to weigh me and take my various measurements. Perhaps to determine doses and also to get a baseline for future assessments. I couldn’t take it all in but the overwhelming sensation was one of shame for having let myself get to this state, anger for letting myself down, embarrassment for being part of the ‘obese and diabetic’ epidemic I kept reading headlines about.
People who know me claim I didn’t look *that* overweight, and it’s probably true. I would have guessed I needed to lose about 20 pounds, and most friends would have said, “yeah, maybe.” But the scale said otherwise. I was 177 pounds that day, which by some measures is indeed obese (for my height of 5’4″). I hadn’t weighed myself in many, many years. And I could have gone on for many more, had this diagnosis not served as an intervention.
In that appointment I’m quite sure I wasn’t thinking critically or reflexively about what was happening. I doubt I was thinking about the medical industrial complex or how pharma wants to keep everyone on drugs or how family doctors simply don’t have time to assess and counsel patients thoroughly. But, all of that research and writing and critical thinking had certainly turned me into a skeptic, willing to consider that what I was hearing was not the only possible story. I knew enough about diabetes to know that I had gotten myself into this mess, and that I wanted a real chance to get myself out.
So I said no. The path spelled out for me isn’t what I want. Tell me exactly, I said – I mean exactly – what I need to do to fix this. The doctor was pleased, I think, but not confident. I learned later it is exceptionally rare for a patient to follow through on lifestyle changes that would alter a diabetes diagnosis without medication. She told me recently that she could ‘read the riot act a million times a day’ but virtually no one does anything about it. But I must have looked like I meant it so she soldiered on. She told me I needed to lose 40-45 pounds. That I needed to eat a diabetic diet. That I needed high intensity workouts and to lift heavy weights. The conversation was slightly more detailed than that, but not much. I was given clues, a place to start, and the rest would be up to me.
I left with a referral to a diabetes nutrition clinic, a requisition for repeat bloodwork in 3 months, and a commitment to change I hadn’t felt a very long time.
Two key things deeply influenced how I would approach my diet and weight loss plan. One was a positive motivator, the other was a depressing and even sinister experience that made me angry and even more motivated.
- I read The Diabetes Code by Dr. Jason Fung. While I did not ultimately follow the fasting plan he outlines in his book and teaches at his diabetes clinic in Toronto, the book convinced me, crucially, that I could very likely accomplish what I needed to without medication, and that it wouldn’t take very long. It also convinced me that the standard medical treatment for diabetes was in fact the worst possible option. He presents compelling arguments in support of the idea that diabetes itself isn’t progressive – it’s the medication regime that makes it appear so. If even half of what he wrote was possible, I knew it was worth a try.
- I attended the community-based diabetes workshop I was referred to, run by LMC Diabetes and Endocrinology. This is a private clinic whose services are covered by OHIP (our provincial health insurance plan). They provide 4 diabetes workshops, each 3 hours long, each on a different aspect of living with diabetes. A referred patient must attend all 4 before being able to access a nutritionist for a one-on-one consultation. The one I attended was an overview for the newly-diagnosed diabetic.
I had read the book and was well into my new diet and fitness regime when I attended the workshop. I knew I was likely taking a different path than the other attendees so I decided I would just listen. I didn’t yet know how successful I would be – I was preparing myself for the possibility that I would have done all the work but would still require medication to bring down my blood glucose. So maybe there would be some helpful tips.
There were maybe 12 people at the workshop. Many were older folks, visibly overweight, mostly non-white, all women except one. Many had been living with type 2 diabetes for a long time but had been referred to learn about lifestyle changes – probably because their diabetes wasn’t ‘under control’. There was only one other person like me – the only man. He was my age, newly diagnosed, same A1C level (we were both at 7.1 – the threshold for diabetes diagnosis is 7.) There was one person there with type 1 diabetes, the rest of us had type 2.
(I don’t recall the credentials of the person running the workshop – perhaps she was a diabetic nurse, or a dietician, or a nutritionist. Because I can’t remember, I’ll call her the instructor.)
The instructor told us under no uncertain terms that diabetes is a progressive, non-curable, chronic disease. Now that we have it, that’s that. We were at the workshop to learn how to manage our disease and to learn how to live with our new reality. She appreciated it was difficult to get our heads around it but it was really important that we start thinking of ourselves as diabetics.
She brought out a large illustrated chart to show us how diabetes develops. The key factors contributing to diabetes were genetics, race, age. It shows up as fat around the organs. Everyone crowded around the poster. Someone said, “I guess we’re the unlucky ones.” The others nodded, exchanging meaningful glances. There was not a single word about poor lifestyle habits that got us here – only some suggestion later on that lifestyle changes might help slow the progression of the disease.
The man asked a question: “But I read that if I make changes, I can actually reverse the diabetes and get my numbers back to normal.”
She looked at him with pity, like he was a cold, wet kitten. “Sir, were you diagnosed? Like, did you a doctor give you an official diagnosis?”
He said yes.
She said, “If you are PRE diabetic then you can do something about it. Now it’s too late. At this stage we are in management mode. That means medication, and you’ll need to make lifestyle changes to help the medication work better. Like I said I know it’s hard to accept.”
He wasn’t defeated. Yet. “But, hypothetically. If I focus and get my numbers down. Will I still have diabetes?”
She had been backed into a discussion she clearly didn’t want. “Maybe. Probably. In all likelihood diabetes can’t be managed by diet and exercise alone.” She was getting a little impatient. “If you want to go against what your doctor says then that’s up to you.”
OH MY GOD. I wanted to clear the room, shout RUN! Instead I jotted down the name of the book I had read and tore it from my notebook. I was about to slip it to him when he suddenly stood up and said he had to go pick up his son. I hoped it was a lie – I hoped he had quickly hatched an escape plan. But that wasn’t the case. The instructor knew in advance he had to leave, and as he headed out, he quickly signed up for the next session. I wish him well, and hope he’s out there somewhere, 30 pounds lighter and with normal bloodwork.
The indoctrination was intense. She left us with some more food for thought:
- “Diabetics need more medication over time because the disease is progressing. It is not because of drug tolerance, or effects of the drugs. The disease gets worse and you can’t change that, only slow it down.”
- “If you are diagnosed with type 2 diabetes, there is no going back. You will not fix it. You can only ‘reverse’ PRE diabetes, and none of you have that.”
- “As diabetics you must eat frequent small meals, no more than 6 hours apart. This is critical to maintaining even blood sugar.”
This is not a research paper and I’m not going to present evidence. Please, go and read as much as you can, including The Diabetes Code. I am personally convinced that the majority of what was presented in this workshop was outdated and dogmatic. What was extra distressing for me was how eager the attendees were to identify with this carefully constructed identity of ‘diabetic patient’. Many felt vindicated, like their weight and bad eating were now explained by having a disease. The instructor gave tips on how to talk to our families about our condition, how to rally support and sympathy, how to help others understand their condition. A couple of the women seemed pleased they now had ‘joined the same club’ as their siblings and parents.
I think it’s shameful what happened in this workshop. It reveals (in part) how obesity and diabetes are perpetuated by the healthcare system. How healthcare is only interested in managing risk. That ‘owning your health’ is simply about getting people to medicalize themselves through mass socialization and control mechanisms. And most people who are ushered into this system are especially susceptible and impressionable – not because they’re dupes but because they are unpracticed and untrained to think critically about healthcare. I came into this experience with 12 years of extreme caregiving, another 10 years of analyzing healthcare through a critical lens, and an advanced degree in bioethics. And even for me, the pressures to conform and comply were strong. The ‘average’ patient doesn’t stand a fighting chance unless they go into each healthcare encounter with a measure of scrutiny and skepticism.
This is a good moment to circle back to my earlier reflections on my overall ‘project’ of revealing healthcare practices to be about much more than they seem. While some patients may find the ideas interesting, these notions may be distressing to individuals facing personal challenges with their own health who need advice and treatment from a trusted physician. Are we supposed to question everything? Well, yes – but it need not be in despair. We don’t need to know exactly what mechanisms are at play and what agendas are being served at every encounter and we don’t need to be suspicious of every doctor – but we do need to know that healthcare practices are developed by people, not by some abstract and neutral force called ‘science’. Healthcare – especially public healthcare – is optimized for risk management. This will always be true despite talk of ‘personalized medicine’. It perpetuates its own truths and pre-approves acceptable choices for patients. Our experts and clinicians are trained to operate the system as it is, not to construct it on the fly according to each patient’s needs. In order to run efficiently, healthcare as a whole needs its patients to behave predictably. So it sets up easy pathways that we can all march through in an orderly fashion, with the clever trick of making us think we independently chose our own paths. To ‘question everything’ doesn’t mean to reject all professional advice on principle. It means to have an awareness that there is much, much more going on: the advice you’re being given has been constructed with an eye to mitigating risk; the people giving the advice are constrained by an imposed scarcity of time and resources; diagnostic thresholds and public policy are often set by or heavily influenced by pharmaceutical companies and even junk food companies, who are motivated by profit.
To question everything means to imagine yourself the outlier, as someone who will resist the comfort of predetermination and instead work towards optimal health on your own terms.
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Hi! In November I was diagnosed with type 2 diabetes. Healthcare's response? Try to make me a lifelong patient with an illness identity. Fuck that. Instead I changed everything. Lost 27 lbs (so far), bloodwork now almost normal. Stay skeptical, friends. Blog post to come…
My weight loss regime
The plan I created for myself resulted in a consistent weight loss of 2 pounds a week (although it’s slowing down slightly now), and normal A1C levels after about 14 weeks. None of what I describe here should be construed as advice, with the exception of the book recommendation. Read, and then read some more.
My regime is listed below. Take it for what it is: an account, not advice. I’m happy to answer questions to clarify or provide more detail.
I account for every single calorie and nutrient through an app called My Fitness Pal. The first month or so I reduced to 1600 calories a day and for the past 2 months my calorie range has been 1300-1400 a day. (That’s basically the calorie content of one large restaurant meal – I haven’t eaten out in a long time!) Once I’ve met my weight loss goals, I’ll go back up to around 1800-2000 calories a day, which is the maintenance rate for my new size. When I was gaining weight (and also a bigger size), I was eating around 2300-2500 calories a day.
Daily macro nutrient ratios:
Daily nutrient minimums:
Protein – 100g
Fibre – 35g
Water – 2.5L
To meet my goals I have to be intentional. I plan my food ahead of time – I enter the next day’s food into the app and adjust the proportions until I meet the nutrition requirements. So each morning I know exactly what I need to eat that day. If I just eat randomly I miss the mark every time.
Generally, to meet my calorie and nutrient goals, I eat mostly protein and vegetables. I’m vegetarian (not vegan) so in addition to tofu and soy products, I eat eggs (a lot), Greek yogurt, paneer, part-skim mozzarella cheese. I’ll have butter, avocado, olive oil. No fruit except berries. No starchy vegetables (no potatoes or chips!), only ‘above ground’ vegetables – broccoli, cauliflower, peppers, brussels sprouts, kale, chard, bok choy, snap peas. No bread, no rice, no pasta, no refined grains of any kind. I have soaked oats and added wheat bran for breakfast. I don’t drink alcohol anyway, but if I did, I would have stopped. Water and coffee only. No refined sugar or sweeteners.
I work out 4 mornings a week at OrangeTheory Fitness. I’ve maintained the schedule through 2 colds, terrible weather, visiting relatives at Christmas. Without fail. Each class is 55 minutes of structured weight training, treadmill, and rowing.
Intermittent fasting schedule:
I follow a schedule known as 16/8 – every day, fast for 16 consecutive hours, eat all my calories within 8 consecutive hours. I aim for an eating time window 11am-7pm. This helps me feel less hungry between meals and I’ve gotten used to not eating in the morning. This is probably the most flexible of my rules – I don’t always fit my eating within 8 hours, which is fine. (This is a well-documented approach to eating, which runs contrary to standard advice that says eat all day long. Look up ‘intermittent fasting’.)
I hired Gillian Thomas as my nutrition/accountability coach – we share a spreadsheet where she sees my daily weight, whether I exercised, my various nutrients. I include other personal comments as relevant. My progress and goals are clearly charted. She reviews it throughout the week and I can ask her questions or leave comments. She did not construct my eating or exercise plan, but her knowledge and experience have helped me figure out healthy goals and ways to stay on track. She also talks me down from the tree when I over-focus on my daily weight.
Here’s a section of the spreadsheet so you get a sense of the daily tracking:
And here’s a chart of my weight loss – I find daily tracking very unpleasant day-to-day but immensely helpful over time.
What some meals actually look like – the proteins are egg, paneer, soy/gluten ‘meat’ products, edamame, tofu, part-skim mozzerella, greek yogourt: