No Shame in Disease Diagnosis

ShamelessI’ve been thinking about the responses to the ADA’s misguided classification of obesity as a disease, and in retrospect I am really concerned that, at least in my own work on the subject, I didn’t do a good enough job making sure that I didn’t stigmatize people who are living with a disease.  I’m concerned that when I say “my body size does not constitute a disease,” people who are living with actual diseases might hear “I don’t want to be like you” or “I think that being diagnosed with a disease is shameful.”  Today I wanted to both apologize to anyone who may have been stigmatized by work, and attempt to clarify my concerns.  (Note: There are plenty of conversations to have about disease theory in general, but for this blog I’ll discuss diseases within the context of how they are currently treated by Western Medicine.)

Let me start here.  There should be absolutely no shame in having a disease.  None.  It does not matter what disease someone has, they should never be shamed for it.  I advocate for nothing less than shame-free, blame-free, future-oriented healthcare.  It does not matter why someone has a disease, it matters what happens moving forward.  We can never change the past so after a diagnosis it’s all about options and choices, not blame or shame.  People who are diagnosed with a disease should be given true information, all of their options, and compassionate care on their terms based on their choices.   There is no shame in being diagnosed or  living with a disease and I am extremely sorry that I didn’t do a good enough job saying that in my blogs on the subject.  I fucked up and I’m sorry.

To clarify, my concerns with obesity being classified as a disease center primarily around the fact that the sole diagnostic tool, and the sole measure of treatment progress, for the “disease” of “obesity” is a simple ratio of weight and height.  So when fat people go to the doctor for actual diseases I am concerned that they will be diagnosed with “obesity” as the primary disease and their healthcare provider will prescribe weight loss in lieu of actual health interventions that are proven to help the disease they actually have.  For example, if a patient goes to the doctor for Type 2 diabetes, they doctor might consider the T2D to be a symptom of, or secondary diagnosis to, the “obesity” diagnosis and suggest that they ignore interventions that are shown to help control T2D in lieu of attempting weight loss.  This is a dangerous practice that is already happening (I was once prescribed weight loss for strep throat), and I’m afraid that the ADA’s decision will lend legitimacy to the practice.)

The major problem with that is that there is not a single study where more than a tiny fraction of participants have succeeded at long term weight loss, and there are certainly no studies where more than a teeny tiny fraction of participants lost enough weight to change their BMI longterm.  Often “success” in a weight loss study is defined as 5% of body weight, or any weight loss at all (which for many fat people doesn’t create a shift in BMI which, remember, is the sole diagnostic tool and the sole measure of “progress” in treatment.)  Almost everyone loses weight in the short term and almost everyone regains the weight in the longterm and while they are busy not succeeding at long-term weight loss (which shouldn’t be a surprise since it’s exactly what the research tells us will happen) their actual health issues may go untreated.

The diseases correlated with being fat are not actually fat people diseases.  Thin people get them too and, when they do, they are given treatments that are shown to treat the actual disease. My concern is that fat people’s medical treatment will be compromised because they will receive different care than thin people who have the same diagnosis simply because of their size, again this is a dangerous process that is already happening and that I feel will be exacerbated by the AMA’s poor choice.

I also feel that calling body size a disease risks putting a very finite pot of research money to very poor use. The AMA’s bad decision gave 30% of Americans a disease, and I am concerned that the diet and pharmaceutical companies will jump on this to say that the sheer volume of people with the “disease” justifies spending a ton of money on weight loss interventions.  My concern here is that funding will be pulled from actual diseases and put toward weight loss research on the basis of the “prevalence” of this disease, which would be a crime against humanity as far as I’m concerned.

I hope that makes things a bit more clear, and I am reminded that activism requires constant vigilance to make sure that we’re not trying to solve one injustice at the expense of creating another.

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34 thoughts on “No Shame in Disease Diagnosis

  1. Thank you for writing this. As a fatty who has had several surgeries, I was often upset with the part of the fat acceptance movement that went “well, I’m fat, but I’m healthy! Look at my blood pressure number!”, “I’m fat, but I exercise! My cholesterol numbers are in the perfectly healthy range!” etc. It made me feel like a bad fatty, like a hypocrite. There I was preaching about fat acceptance whilst being the shining example of an unhealthy fat person.

    It all changed when I realized the hospital I was treated at never ever mentioned my weight or suggested I should diet. I talked to at least a dozen different nurses and doctors and specialists, and none of them ever said anything of the sort. To them, their priority was helping me with the illness I was seeing them for – not for anything else. In that way, they were more tolerant of sick fat people than some people in the FA movement, who prided themselves so much and so loudly on being healthy, that they were creating a less safe, more judgmental space for unhealthy fat people.

    To discriminate fat people because they are fat is sizeist; to discriminate sick people because they are sick is ablist. To discriminate fat people because they are sick and it must be because they are fat, is both. I would never believe for a second you’d judge fat people with a disease – but I’m glad you clarified it in a separate post, either way.

    1. The world thinks that Fat = Unhealthy. So it stands to reason that Healthy + Fat people would want to make it clear that those are just stereotypes that have no basis in fact. It really sucks though that you, and other people how happen to be fat and also happen to be unhealthy, get caught in the cross fire. It’s sad that sometimes we got so caught up in disproving stereotypes that it can cause pain to others. I think your comment really shows how important it is to be mindful of all sides and all facets of the situation. It’s not right to hurt others.

      I never knew that my defending my health and trying to squash a negative stereotype would be creating a “judgmental space for unhealthy fat people”. Could I ask you (and feel free to not answer if you’re uncomfortable with it), what do you think we could do to help media brainwashed people, who automatically think that just because someone is fat that they are unhealthy, to see that this isn’t the case and to start to realize that fat doesn’t automatically mean unhealthy? How can we help people to see that Fat does not automatically mean Unhealthy without talking about how healthy we are? I’m one those people that will proudly state my health when talking to others about the fat/health issue. How would I go about trying to dispel that stereotype without making it a less safe place for unhealthy fat people?

      I don’t want to hurt anyone or participate in creating a judgmental atmosphere, so if you have any suggestions on how we can go about dispelling that health/weight myth without creating a negative space for people who happen to be also fat and unhealthy, I’m definitely keen to learn. It makes me sad that my proud declarations of health within the health/weight issue discussions could be causing pain to someone else. If I have, personally, be a contribute to your pain, I am sorry.

      1. I believe that the world likes to think fat = unhealthy, because it wants to have an excuse to hate and mistreat fat people. And this idea works because the world also thinks being unhealthy is a bad thing. After all, if no social stigma was attached to being unhealthy, people would have to look for another excuse to hate fatties.

        Personally, I don’t think we can get the world to understand fat people deserve to be treated like human beings with love and respect, unless we can also get the world to understand that health is not a moral imperative. No matter how many healthy fatties like yourself are going to stand up and confront them with their prejudice, the people hell-bent on hating fat people will find enough unhealthy fat people to point out and go ‘see, see, I told you!’

        I don’t think you can dismantle a damaging stereotype by defying the stereotype. I think you have to dismantle the thing that gives the stereotype its power. In the case of fat hate, that is the moralisation of health in our society. Take that away, and the only argument against fatties people will have is ‘well… I don’t like ’em!’

    2. I hear you. I’m fat and reasonably healthy, but I do have some illnesses that are incurable. Since these are mental illnesses, there is an added stigma. Sometimes I get tired of having to justify my existence.
      I’ve never felt that Ragen was asking me to do this, but I too am happy to read this post.

    3. I’ve struggled with how to communicate the fat & healthy thing without sounding ableist. It has no place in the concept that basic human respect and decency is not size-dependent. Period.

      Where I think it does have a place is in the discussion of the science. Science is re-evaluated when there is evidence to the contrary, and many people are trying to point out that there is evidence that fat does not equal illnesss and death. I have a concern that defining obesity as a disease will result in an expansion of overtreatment with remedies that are ineffective and have side effects. So if I’m fat and healthy — have no or minimal cardio-vascular, lipid or blood sugar issues — suddenly I have a “disease” that needs to be “treated.” All medical treatments, even dieting, have potential side effects. And if I refuse because it’s pointless and potentially damaging, I am non-compliant.

      No one with a disease deserves to be shamed, and someone with a 30+ BMI and no T2D is not somehow morally better than someone with a 30+ BMI and T2D. But this decision is based on bad science and just sucks more people into the vortex.

  2. I really wish those idiots at the AMA who made that choice would read this. But, perhaps their pockets are so heavy with payoff money that they are too busy trying to hold their pants up. Or perhaps they are too busy counting their blood money to read anything that sheds Some Sanity on this shitty situation.

    1. I mean, that’s one way to look at it. That’s possible. But it’s also possible that they honestly believe that they’re doing the right thing. Fatphobia is so prevalent in our culture. Lots of people who hear about FA from me for the first time in casual conversation have never even considered ideas that we take for granted, like how fat women can be just as interested in fashion as thin women, or how weight loss really doesn’t work, or how there are almost no fat people in tv shows/movies/books/magazines/etc.

      So yes, maybe all the AMA people are evil connivers cackling over their hoards. Or maybe people with good intentions sometimes make bad choices.

      1. The AMA moved to label “obesity” as a disease despite their own council on science and public health telling them that it would be a BAD move to label obesity a disease. If you want to think that the AMA are “people with good intentions” who just happened to made a bad choice, that is of course, your prerogative. I think perhaps you should dig a little deeper and look more closely at the evidence, though, if you want to seriously consider the motives behind such a move.

    2. “perhaps their pockets are so heavy with payoff money that they are too busy trying to hold their pants up. ” This made some pretty funny pictures in my mind.

  3. Reblogged this on The Cheese Whines and commented:
    When I lost 10% of my weight, I was told to “do it again.” That’s the thing–it’s never enough. It’s time to stop the madness.
    Diagnosing a body type as a disease in and of itself is also madness.


    Some people have chronic illnesses/conditions that are environmentally caused. Some have hereditary health issues. Everybody will catch something going around or be harmed in an accident.

    I don’t care whether someone got sick because they got exposed to someone sick at work, because their parents had unfortunate genes to pass on, because they slipped while rock climbing, because a major corporation dumped toxins into their neighborhood, or because they decided that the sell by date on the cottage cheese was more of a suggestion: if you need medical care, you should get it without shame and with the best scientific understanding of your ailment available.

    Isn’t that what medicine is all about? Making people as well as possible based on factual knowledge?

    ‘Obesity’ does not work on that level. After all, if Tom Cruise and I both go to the doctor, according to the charts we are both obese… but you know damn well I’m the one who’s going to leave that office with a Weight Watchers meeting flyer and a pamphlet on the wonders of the Lap Band. Tom sure aint!

    If we have the same disease, we should be looking at the same kinds of treatment for it.

  5. I do have another disease that has a lot of stigma associated with it. It’s called cancer. I’m also fat. Interestingly, even though obesity is listed as one of the numerous risk factors associated with endometrial cancer, no one involved in my treatment ever suggested that I lose weight. In fact, when I jokingly remarked that now I might actually be able to lose some weight, I was quickly told that they DIDN’T want me to lose any weight. My weight was carefully monitored, every time I went in for a treatment. And when I actually gained weight, it was attributed to lymphedema, a common side-effect of cancer treatment, not due to over-eating or lack of exercise. Now, thankfully, I have been declared cancer-free. But I wish other medical professionals would have the same attitude about my weight.

    Thanks for two thought-provoking essays.

    1. I am VERY glad to hear you are cancer-free. I am also happy to hear you had a good, supportive experience with your cancer team.

      My experience was different. My oncologist told me straight out that my ovarian cancer was my own fault for being obese. He also encouraged weight loss during my battle and wanted to refer me to a WLS surgeon after he was done seeing me.

      I am also now cancer-free, no particular thanks to my own cancer team I am sad to say.

  6. Sadly, while the treatments for something like fibromyalgia are minimal, at least going to the doctor and saying I’m in pain results in some sort of pain medication. Going the doctor fat and saying I’m in pain results in a weight loss lecture…

  7. Hi Ragen,

    I want to thank you very much for this, from the bottom of my heart. The reactions to the AMA decision have been very hurtful to me (not yours, though), to the point I have been unable to read the fatosphere since the first reaction posts started coming.

    I live with chronic diseases and seeing that conflated with being somehow inferior, broken, ‘less than’, was too much for me to handle.

    Your stance of FA as a civil rights movement that is itself entirely separate from the health status of those it defends is a real beam of hope for me.

    Thank you again very much. Reading this post brought tears to my eyes. Thank you.

  8. I have chronic migraine, so I’m rather in the chronic disease/pain community…

    I also resisted obesity being classified as a disease – *at the same time* as I support the people with various conditions who have had to fight to be recognized as having a disease. (I’m one of the “lucky” ones – medicine had started taking migraine seriously a little before I started having them, and that has just been improving, over the decades.)

    We want various conditions, syndromes, pain to be recognized as disease for several good reasons. The first is that this recognition is needed to get serious research done into how to treat it – at least how to ameliorate it, hopefully how to cure and/or prevent it. The second is that we need this official recognition of the impact the disease has on our lives. Some people, for instance, cannot work – some even need care. Many of us are limited in the kinds of work we can do, the kinds of other activities we can do… (As a fairly minor example, I haven’t been to a movie in seven years – I can’t tolerate the sound and lights.)

    But this is *not* the situation with my weight. It is not disabling. I am not looking for a cure. I do not want research money poured into finding more drug or surgery interventions (that, from everything I’ve seen, tend to make life worse, not better.) It has not stopped me from doing anything I want to do.

    My migraines are improving, and, despite having gained a lot of weight during them, I am now finding myself able to do things physically that I could not do a couple of years ago. Despite being both older and fatter… (Oh, yeah – sometimes the correlation between weight and disease is that the stress and lack of activity during the illness contribute to weight gain. Not the other way around. No one has ever suggested obesity causes migraine…)

    So, no. This “condition” of mine which seems to bother other people more than it does me is *not* a disease. I know when I have a disease… If I did have any of the metabolic syndromes they claim are caused by obesity (I don’t, through genetic luck – I take after my father, not my mother, metabolically) I would expect them to be treated the way they are in my thin cousins. *They* are diseases – or precursors of such, really – and they should be treated themselves, through diet, activity, sometimes medicine, without worrying about weight.

    1. I also have migraines. When my first runaway headache started, my neurologist was unsure if it was an atypical migraine or idiopathic intercranial hypertension. I checked all the boxes for IIH, fat, female and 40, but god bless him, he bided his time and let the symptoms and my response to treatment make his diagnosis not my weight. He never once mentioned my weight or suggested WLS (which a lot of doctors do for IIH). Nor did he suggest that maybe I’ll get the side benefit of weight lose on topamax when he prescribed it. I’ll be forever grateful to him for treating me and not my weight.

  9. Ragen, I’m afraid I’m going to have to disagree with you here. No, there shouldn’t be stigmas attached to diseases, but should isn’t necessarily reality. As someone who’s been on the bad end of medical treatment more than once, I can say that the knowledge of being saddled with a false diagnosis is crippling and enraging, and doubly so when it’s something that comes with forced treatment.

    As I’ve said before here, when I was a child, I dealt with two abusive psychiatrists. The second one deliberately misdiagnosed me with schizophrenia, rather than a correct diagnosis of Asperger’s syndrome with synesthesia and (probable) dyxpraxia, in order to put me in a very limited drug trial, meant to test the efficacy of Clozaril on patients under the age of 18. I should note that this drug has only been allowed to patients under 18 twice two my knowledge: the trial I was in, and one later one. It’s so powerful and dangerous that it was removed from the market for nearly 30 years at one point.

    I’ve lived with the effects of that nearly three-year period for more than 20 years. Even if nobody outside my family and a close circle of friends knows about it, I feel the stigma. It was a false diagnosis, a false disease, but it lingers. In addition, it meant it took years longer for me to find out what was really going on. I didn’t know I was autistic until I was an adult. Worse, I lived in fear for 20 years that the diagnosis would come back to haunt me somehow. I finally gave in and had another psych eval, which gave me proof that I’m not remotely schizophrenic, but the decision to do that nearly tore me apart due to my fear of the entire psychiatric profession.

    I’m afraid, now that obesity is considered a disease, that the same thing will start happening widely and aggressively to people, complete with forced regimens of drugs like Topamax, or even amphetamines. “Take this if you want me to continue treating you.” Hell, I take Topamax for migraines, and amphetamines for hypersomnia. They’re not to be fucked with. And there’s always going to be a stigma attached to those pills, even if it’s only the stigma of spending your hard-earned money on prescriptions while other people are free to do what they want.

    I don’t mean to sound paranoid. I’ve just seen what medical personnel are capable of with the power of a diagnosis and a pill.

    1. Forced treatment is a concern of mine as well. I’ve always been fat and I’ve had doctors tell me many times they wouldn’t treat me unless I lost weight. Basically that was their way of showing me the door and being rid of me. I would have to search for another doctor who might be willing to treat me and not my body size.

      Now, I fear that doctors WON’T be wanting me to leave and instead it will be they won’t treat me unless I do/take the latest obesity eradication treatment. With the AMA behind the disease diagnosis, it will be more difficult to find a doctor who won’t require me to do things I don’t want to do in order to get the care I need.

  10. I love it! Very thoughtful and compassionate. I’ve always felt like I didn’t fit in – type 1 diabetes being one of the reasons – and I’ve always been hesitant to share what it’s really like because it’s a vulnerability and I don’t want to draw attention to it. I’m getting better at both accepting it and talking about what it’s actually like, though, which has been a good process. Yours and other blogs like The Fat Nutritionist’s have been extremely helpful in breaking down stigma and prejudice, both my own internal things and in broader social terms. Helpful like it’s difficult to find the words helpful. Yeah. So having said that, I’m buying your book in the name of a small donation at least.

  11. My concern is obesity overshadowing all other diseases because it’s a quick & easy diagnosis. Get someone on a scale, take their height, code them for obesity, send them away to lose 20 lbs., bring in the next person. More patients can be seen that way, dealing with insurance simplified, and all it costs is receiving competent medical care.

  12. For the record, I’ve never thought that you intended to stigmatize people who have diseases. Maybe I was reading too much into what you were saying, but I heard this: “Obesity is not a disease; it’s a straw man for idiots to tilt at. When medical professionals are busy dealing with a fake disease, they might miss a real disease that needs treatment. They make their patients unhealthier both by ignoring their legitimate issues and causing them undue stress. Please stop. Thank you.”

  13. This is a very compassionate and insightful blog post! I never thought you were stigmatizing people with diseases either. You are always very careful to be compassionate and clear about what you say. I agree that saying Obesity is a disease just by looking at body weight and not anything else is a ridiculous assumption. Fat and thin and in-between people have health challenges, let’s not assume all thin people are bulimic or anorexic, or that obesity is itself a disease- let’s concentrate on care and compassion to all and on treating people who have been diagnosed with a specific disease, all the help, treatment and care that we can. Great post as usual Ragen!

  14. In the past few years I have developed several diseases… my own GP is very good about not commenting on weight (when I lost a good deal of it, he was thrilled to see my blood pressure etc go down, the number on the scale did not concern him). BUT every other doctor I’ve seen in the last twelve months has found reason to slam me about how I ‘must lose weight and my fibromyalgia and arthritis will magically disappear.’ The most offensive was a pain management doc who had no suggestions for me whatsoever about pain control, but who spent half an hour telling me that I needed to live on lettuce if that was what it took (and since he’d lost 60lbs and become ‘skinny’ then anyone should be able to do it.) And this was AFTER I’d told him how I’d been able to lose weight before I got sick, but since then that level of excessive daily exercise was simply not possible for me. I walked out of that office visit practically suicidal with despair and self-hatred…

  15. This was exactly my thought when I first read the headline about the AMA. My local news station was soliciting opinions and boy did I give them one stating a lot of what you’ve said up there – namely the misdiagnosis of larger problems that could cause weight gain and instead taking one look, and saying “lose weight” instead! Unfortunately, the news station instead asked people in the downtown what they thought and anyone overweight they picked said “Yay! Now my doctor can prescribe weight loss help!” *insert huge face-palm here*

    All I can say is that I’m lucky that I beat the AMA declaration. My doctor FINALLY listened to me and prescribed thyroid medication. Unfortunately though, the damage has been done by no one willing to take action sooner. The nodules in my thyroid are impinging on breathing and swallowing so I’ll be slated to have my thyroid removed soon because the nodules are getting bigger and my thyroid is pretty much toast. (*thumbs up* thanks doctors for catching this 3 years ago when I said something was wrong the first time!)

    So my concern is the other potential patients with my same issues out there. Since doctors won’t even bother looking at anything else except for the weight because it’s now medically acceptable to do so; how much further down the path will they have to go?

  16. Though I can only speak for myself and not all sickies generally, I’ve never felt stigmatized here or from FA folks elsewhere – though I’m glad you’re discussing this.

    I have a disease where weight gain is a common symptom, so for a while I had some confusion on how that jived with FA and all the amazing athletic and active rad fatties.. Eventually I realized that 1) the reason this disease is undertreated by docs is because they seldom will treat fat patients with actual medicine, or anything other than a diet and 2) it’s a symptom that like hair loss, affects appearance more than anything. And I’m not going to run around trying to stop hair loss while leaving the disease untreated. The symptoms that are of much more concern to me are fatigue and brain fog – those affect my whole life.

    1. Just out of curiosity, have you had a full thyroid blood panel done? Those were 2 of my symptoms that affected me the most as well. (Brain fog got so bad that I would honestly forget what I was saying half-way through what i was saying and sometimes forgot that I was even saying something in the first place!)

      It’s really sad that when dealing with hypothyroidism that doctors seem to absolutely REFUSE to believe it’s the problem. I think it has to do with the studies that say only 1% of obese patients actually have hypothyroidism so they brush it off as if it’s all in one’s mind. Even if you can get a doctor to entertain the notion to allow a TSH they leave it at just the TSH and won’t even bother testing for your Free T4, Free T3, or antibodies.

      Other symptoms I was showing: swelling (namely eyelids, tongue and hands), dry skin, abnormal menstrual cycle, low waking body temp (normal underarm should be 97.8-98.4, mine was 95.3), enlarged thyroid (which has been causing issues with breathing and swallowing – I have to be very careful or else it will try to go down my trachea), depression, dry/dull hair, sensitivity to cold (fingertips would turn purple in 68-70 room temp) unexplained joint pain (which did disappear the first day I started taking the medicine).

      Even with all that, my doctor still wanted to blame my weight for how a “just barely over normal” result that “normal people would barely begin to show signs of symptoms”. I had a 4.25 TSH. I want to know what scale my doctor was using because my ENT said I was “really far over” normal. Sad to think too, some places are still using the .5-5.0 scale for “normal” TSH results where I would STILL be considered “normal” with a 4.25.

      1. Yep, I’m hypothryoid too – if only docs would pick up on the symptoms as fast as you just did! And I wish they’d get rid of the TSH.

        I’ve found some really helpful info at some of the online thyroid communities, but I always wish they’d factor an FA perspective into their advocacy. The anti-fat bias of so many docs HAS to be a/ the major hindrance to appropriate hypothyroid diagnoses.

        1. Unfortunately, it’s taken the doctors 3 years to get past the fat bias. My doctor who finally gave me something for the hypo said that my thyroid is pretty much dying, and my ENT says that the nodules have gotten larger so he wants to remove my thyroid.

          My subconscious is screaming at me. I want to try taking iodine supplement to try to reduce the nodules/feed the thyroid, but the ENT ensures me that it won’t help.

          You’d think though, with hypo – the weight gain aspect alone would encourage people to have more of an FA perspective. It’s so nutty. I swear, the only way around it is if you’re rich enough to shell out the money for a quarter-yearly check-up including every test to check for all potential problems.

      2. Oh and I hear you on the brain fog… I’ve had an employer accuse me of being stoned! This was before I realized I was HT, but was still obnoxious boss behavior.

  17. Thank you for this. I’m in my late 20s and developed insulin resistance a few years ago. I was put on metformin because I had a doctor who was willing to listen to me and take my concerns seriously. Unfortunately, I’ve since moved, and my new doctor treats me as though I’m lying to her every time I try to talk about my eating habits and exercise.

    I recently contacted her for a referral to an endo because I’ve gained weight and my fasting blood glucose levels are 20+ points higher than they’ve ever been even though I still take metformin, and her first response was to send me to a nutritionist because, according to her, the higher glucose levels are caused by the weight gain. That may be true, but that doesn’t explain the weight gain itself, especially since I typically walk 3+ miles per day and eat under 1800 calories (not dieting – this is just where I’m comfortable). She made the endo referral when I wrote back and pushed, but it’s so frustrating feeling like my doctor thinks everything is my fault.

    I had some pretty seriously disordered eating habits in my early 20s (possibly orthorexia, but that’s not a “real” diagnosis) and even though my eating is much more normal now, those tapes are still in my head, along with the fear that if I do develop type 2 diabetes, it’s all my fault.

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