As Republicans in US government announce a health program that will provide less healthcare for lower income and older people, and enormous tax cuts for the very rich (including, specifically, health insurance companies) there is a lot of discussion about what will happen when healthcare gets even more difficult to obtain
When it comes to fat people, there can be even more barriers created by fatphobia. The following is a real story from a blog reader, shared with permission, that beautifully illustrates many of the barriers that fatphobia creates to getting evidence-based, competent healthcare:
So I’ve been having a horribly bad asthma flare, for going on nearly six weeks now. I’m wheezy, to the point that people across a room from me can hear the rattle. I’m also full of phlegm, and for the entire first half of this, I wasn’t able to produce any of it. It’s been bad enough that I’ve been in the ER twice, and my O2 sats regularly hang out in the low 90s. The pain in my ribs, back, shoulders, and chest, from struggling to breathe, has been an almost constant companion.
My first trip to the ER earned me a round of prednisone, but my blood work and xrays showed no infection or pneumonia, so no antibiotic. I get uncomfortable symptoms when on high dosages of prednisone, so I altered the prescribed taper just a little and was on it nine days instead of six. I was feeling pretty good for a few days after the steroids, but got worse again, and ended back in the ER two weeks after the original visit, and the night before my appointment with my asshole of a primary.
In the ER the second time, xrays again showed no pneumonia. They couldn’t get my O2 sats to stay above 90, even after two breathing treatments and 40mg of prednisone, but since I was seeing the primary the following morning, and my pain levels had improved greatly with the breathing treatment, they let me go home.
Primary visit. This asshole has lectured me about my weight, both personally and through his nursing staff, since my first visit. He started in right away with weight. He’s convinced my weight has caused my issues…never mind that I’ve had asthma since childhood, or that I’ve been this same weight for three years. Never mind this is a sudden onset of intense symptoms. Never mind that he hasn’t addressed my concerns about better managing my asthma in general, say, with a prescription for the oral Singulair that’s worked well for me in the past, or even by making sure I’ve got rescue inhaler refills called into my pharmacy. (I’ve been making do with Urgent Care prescriptions, and by under-treating or using alternative/OTC treatments when I do have flare/attack symptoms)
Never mind that I live with a smoker, which triggers symptoms, or that I was unexpectedly exposed to triggering cold temps when I had to change a flat tire, just before the flare. Never mind that I’m almost every single year, this time of year, struggling with respiratory issues related to poor indoor air quality and/or illness. Or that the least time I had a flare this prolonged or this severe was while my hormones were dealing with puberty, and I’ve just begun the menopausal drift.
At least he finally agreed to prescribe me an at-home nebulizer and refilled (with just 3 refills for the year -cue eye roll) my rescue inhalers, right?
Grrrr…
Referral for a lung function test & consult with a pulmonologist. Techs at the lung function were perplexed that the primary would assume weight was primary, with all the other things I reported. They agreed that, without a sudden significant gain, a lifelong asthma diagnosis want suddenly going to be triggered into a flare by a stable weight. I was having a pretty good breathing day that day. Their evaluation was that there was no COPD (which asshole primary had been sure would be the result), but that the results definitely indicated and supported my already well-documented history of asthma.
That was last Monday.
Thursday, I went to Urgent Care because of pain and fullness in my ears. Because of my O2 sats and audible rattling in my chest, the doctor there performed an exam based upon that, asking questions about duration of symptoms and medical history. She was unsatisfied with the care actions of the other doctors I’ve been seeing, and prescribed Doxycyclene to treat what she suspected is an underlying infection.
My smoker at home has been gone out of town for a little over a week. During that time, I’ve been using the nebulizer almost every four hours, and then added the antibiotic…I’ve been coughing up some massive amounts of chunky, gunky lung butter, folks. Major improvements, not only to background pain levels, but to chest rattle, energy levels, and overall O2 sats. (I’ve got a portable at-home monitor) I’d been seeing slow progress with just neb treatment & reduced second hand smoke, but every nebulizer treatment since beginning antibiotics triggers major coughing spells that bring up big chunks.
Today… I receive a call from asshole primary’s nurse. In a chipper, sing-song voice, she reports that the pulmonology results indicate my weight is the culprit and that primary doctor recommend reducing calories. I asked why then, after regular nebulizer albuterol treatment, reduced second-hand smoke intake, and powerful antibiotics, now I’m finally improving? And why only now, after three years of maintaining at this weight and an entire lifetime’s history of asthma…why now am I only just now having an asthma flare, because of my weight?
Fucking bullshit. I’m going to need some major restraint, and a whole lot of willpower to keep from going postal at the pulmonologist’s appointment Monday. This is straight up lazy, dangerous, bad medical practice.
In the US system of “healthcare” (which is based on the idea that it’s cool to let people die if they aren’t able to “sufficiently” contribute to the bottom-line of multiple for-profit companies – including CEOs who make more than $100,000 a day) it is very difficult for many people to get healthcare, with the worst situations happening to the most marginalized people.
Another layer to that for fat people is the practice of thin people who can get care receiving evidence-based interventions, and fat people getting diets no matter – as we see clearly in the situation above – what the evidence suggests (which is especially a problem since there is no reason to believe that the weight loss methods prescribed by doctors will lead to thinness or better health – which are two different things.)
If you find yourself in this situation, the first thing to know is that you are not the problem – the system and the doctors you are dealing with are. You have every right to be frustrated and angry – this is bullshit. Well-meaning people will give you advice that is at best completely useless and unhelpful and at worst will make the problem worse. However you choose to deal with this is valid.
Some suggestions for dealing with this crap can be found here.
You can also check out the Fat Friendly Health Professionals List – and if you know fat friendly health professionals anywhere in the world, please take a moment to add them to the list. These are stopgap measures that individuals may be able to use to help, but let’s also remember that the true solution is accessible healthcare for all, free from fatphobia.
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File a complaint with the licensing board. I don’t know if it will go anywhere but it might make them think twice before blaming everything on bmi, that might save someones life. They will have to answer for their behavior to other physicians who know better.
I was recently diagnosed with Early Onset Alzheimer’s disease (or type 3 diabetes as my now fired doctor called it). My wife is very ill mostly and needs me to care for her. We aren’t that old (68 and 65 respectively. I am so terrified of what will happen to us. I mean literally terrified and worried that we will be eating dog food in order to pay for our medications. I have memory and cognition problems already and by both the now fired doctors and my daughters wife (who is an MD) it will get worse. How am I supposed to follow this new plan and make the right decisions? What will happen to me and my wife? Do they not consider people like us? My wife and I are very lucky in that w have a doctor in the family who can do prescription for us but if our medication bill which covered by insurance is now almost $3200 a month) is not covered my wife and I will die. That’s not dramatic either. First we will lose our house to medication. Then we won’t be able to afford food due to medication. Then we will die.
I have never been this scared in my life.
Denny, I am so sorry. I wish I had some words of comfort or hope. I am terrified too. I think all of us in our 60s are. I have some complicated health issues too, and I am lying awake at night in fear. My husband and I have been talking about which method of suicide we’ll use in a few more years, if we won’t be able to depend on Medicare to be there when we need it. I am so very sorry for your troubles. I wish I could help.
Thank you so much for your kind words. I want to have hope but I see the Twitter of the president, Paul Ryan just caving to the health insurance industry and I just don’t see any. My daughter tells me to have hope that trump will only be here for four years but I will be 69 then with a disease that’s progressed. I don’t have four years. And it will take time to recover from the that he does.
I never thought I would say this and I’m glad this is anonymous because my wife and me are taking 4/5 of prescribed morphine that we need for pain. The other we save for when we can no longer take it. This is the United States of America and I’m feel that I Have to hoard deadly pain medicine for when we are out of all other options. That’s trump and republican health care. They are doing this to us. Because thier friends need another million dollars.
I am terribly sorry for what you are going through. It is unacceptable. Nobody should have to choose between medicine and food, ever.
Yes, they are doing it to us. Here, in the US. I am heartbroken for my country, for you, Denny, and your wife, for all of us. I’m glad this is anonymous too — I am not actually hoarding lethal medication yet but I seriously do think that the only option left for many of us in a few years will be suicide. It is beyond heartbreaking that this could happen here, in this country.
I worked in long term care for a cumulative of about 25 years. I have also had people close to me, including one who was diagnosed with Alzheimer’s at only 55, go through the process of dementia. I am in agreement with you. Not hoarding the necessary medication yet, but I won’t have what little I’ve managed to save via my 401 K and such be sucked away in less than a year by a nursing home. I want my son to have it.
It’s terrible that it comes to thinking this way. Our health care system is so badly broken. This is one of the most advanced nations in the world when it comes to what we can do medically, but so many can’t afford even the most basic medical care.
I don’t even know what to say, but you and your wife are the people I think of when I hear “Give him a chance.” For what? To allow the most vulnerable and in need of heathcate to suffer? This is why despite my own health problems I have to try to resist. There’s too much and too many people at stake 😥
I know I shouldn’t still be surprised by the stupid things prejudice makes people do, but I am. I hope this patient can move to a better doctor and get the correct treatment. I also hope the smoker will have the decency to smoke elsewhere, or at least spring for a good air filter.
I know! Why can’t the roommate at least smoke outside, or even just open a window?
See also: why I am one month into fruitless coughing and ongoing chest pain (low-grade, and yet) after a monster cold that had me seeing stars from coughing several times a day, but have been dragging my heels about going to the doctor to get the steroid I probably need to kick this damn thing. Is this a good strategy? No. But like, in a world where DT is president, I don’t need any more crap in my day, you know? Ugh.
That doctor is seriously incompetant to be f***ing around with asthma that bad. Some people, even doctors, have this weird idea that asthma – despite being an inability to do that thing necessary for life, i.e. breathing – is just some kind of minor illness, or a moral weakness, or lack of willpower, or a thing that nerds have in movies. People die from it, it has to be taken seriously. I’m glad at least that the person who wrote this account is able to take their own health and illness seriously, and is able to fight for adequate health care. Keep going; you deserve to be taken seriously and to be treated with respect.
I would humbly suggest that the writer get a copy of the pulmonary records. The primary may have read a report that just says “no COPD” as “this is due to weight” because of his own (absurd) bias, so before getting upset at pulmonology I’d find out what they actually said. Maybe they did blame this on weight, but maybe not.
(I practice in specialty medicine, and I’ve definitely had primary docs misinterpret my notes. )
Also, maybe collect the “lung butter” the OP is coughing up, and bring it to the primary doctor. Show him how much “weight” you’ve been losing, since getting actual treatment.
And report to the medical board.
Yes, they are trying to kill us. Cure us, Kill us, both either one, eh.
One of the sad things is that a lot of people seem to have voted for Voldem–er, Trump–because he promised to fix health care. They wanted a president who would give them MORE healthcare for less money (and with good reason: I want that too). They were deceived and hoodwinked, and some are regretting their choice because they don’t see it manifesting as they imagined.
Not going to say anything else–it would just be ranting.
Can we call him Voldemump?
It even reminds me of a disease, so that just seems so apropos, to me.
I’ve been advised by some politically savvy folks to call him Donald, because it completely strips him of the respect he thinks he’s due without recasting him as some kind of cartoon character, and also he hates his first name.
Really? If he hates his first name so much, why has he been going by “The Donald” for decades?
I suppose just calling him “Donald” without the “the” in front of it would take away some of his thunder, at least in regards to his name.
I wonder why he never just changed it to something he liked, though. It’s not like money was an issue.
Absolutely fucking horse shit. I e had asthma since childhood. After my mother finally believed I wasn’t faking it (I was sent home from school after she forced me to go. I could barely walk. The nurse there thank goodness took one look at me and called home), I still didn’t go to a doctor for it for, oh, ten years. I’ve had asthma at lower weights. I’ve had asthma exercising on a daily basis. I had asthma when I ran s 5k. People of all sizes get asthma. If my lungs are filled with phlegm, what the hell does that have to do with my weight? I’d be as enraged as this person. Hell in enraged for them.
I’m so sorry your mother didn’t believe you.
I was a sickly child (sickly teen and adult, too. Just sick, forever, regardless of weight), and my mother told me, when I was ten years old, that she believed I was a hypochondriac, until she realized that I was missing a lot of things I really wanted to do, because of being sick.
Ferris Beuhler missed school. I missed play dates, sleep overs, parties, church activities, concerts, movies, etc. When I was old enough to start paying my own way, I don’t even know how many times I had to call around at the last minute and say, “I’m too sick to go to X, and I hate to think of the tickets I PAID FOR going to waste, so would you like them?”
I bet you have similar situations, when asthma kept you down. And yet, it seems to be a fairly common prejudice that it’s a “fake disease,” and that people are only “doing it” for the drama and attention.
I remember the first time I had an attack triggered from a particular source. I used to have guinea pigs, and my dad bought cedar wood chips for the bedding. They smelled amazing, and I spent about five minutes sniffing them. Apparently cedar is one of my asthma triggers (or was). Back then I thought I was just getting really bad chest colds.
I had no idea it was common for people to think asthma is a fake disease, but I’m not surprised. I encourage anyone who believes that to listen to my lungs even on a good day. There’s always a wheeze.
I got the hypochondriac, too. You have to love not being believed. It really messes with your perspective, and makes you second guess so much.
Cedar is also a no-no for guinea pigs, as it’s highly toxic to them. The pet stores all swear by aspen, but that caused everyone at home to cough up a lung, so pine it is.
I wish I’d known that back then! This was more than 25 years ago and they used to sell it for bedding. I suppose they’ve gotten better with it. They did have pine at that time as well, which was much better for my asthma/allergies. Poor piggies though 😦
Another lifelong asthmatic here. The one I remember rankling is “other children have asthma, too, and they don’t miss as much school as you do!” Well, maybe the other kids didn’t have it as severely as I did. It was almost gratifying when the school insisted I was a hypochondriac and virtually forced my mother to send me in when I was sick one day and I wound up being rushed to the hospital. Almost gratifying except for the life-threatening part.
Currently dealing with not being able to afford the one drug that gives me almost normal lung function (with insurance) and having to settle for second best at a price that’s ouchy and would pay for a couple new iPhones every year. Lots of sympathy for all concerned here.
I just fired my Rheumatologist because he told me to lost weight at 4 out of 4 appointments, telling me that it would help my Fibromyalgia and I would feel a lot better if I lost weight. He prescribed an 1800 calorie diet and told me I would lose weight fast and feel great. I never went on a diet because I don’t hate myself that much, but after the second appointment I was directed to you and I am so much better for having read your blog. At my 3rd appointment, he started by saying “You know I’m going to talk to you about your weight right? I told him that we could certainly talk about my weight because I am happy with my weight, I do not want to lose and since I am metabolically healthy and I am not gaining I do not think it is a problem (of course nobody has to earn the right to not have their doctor fat shame them, but I was trying to appeal to him on his level). He then tried to scare me with “OMG Deathfatz Sleep Apnea” because at our first visit I had discussed sleep issues (which are normal with Fibro) but he had my sleep test results right in front of him and when I kindly asked him to tell me the test results he checked them for what appeared to be the first time and determined I do not have sleep apnea. After that he didn’t say anything about weight on that appointment. My 4th appointment was last week (9 months later – it was supposed to be 6 months later in December but he postponed it twice, I was started to think he was trying to send me a message, and I would’ve gladly switched doctors but I live in rural Tennessee and there are very few Rheumatologists in the area) he ended the appointment by telling me I should lose weight and I would feel better. I told him we’ve already talked about this and I don’t think I need to lose weight and I’m still not gaining and I was gearing up to say something about the studies and he cut me off and said well just make sure you don’t gain at least, and I’ve filled your prescription (I get gabapentin, he doesn’t even give me a pain med for flare days) and stalked out of the room. When the nurse came back in she came in with blood work order that he didn’t bother to tell me he was ordering, and I had to clarify with her that this was fibro related not a workup of cholesterol or something so he could check for something else to fat shame me for. So I’ve fired him and I’m switching to the only other doctor less than an hour away.
Wow. I have to pick my jaw up, now.
He didn’t even look at the results before chiding you about sleep apnea?! And then, after you telling him, multiple times, that you’re not going to lose weight, he STILL tries to get you to lose weight?
I’m glad you were able to find someone else, even if you do have to travel a ways for it.
Yes, I couldn’t believe he tried to scare me into losing weight because of sleep apnea OMGDEATHFATZ before he even looked at my sleep test results. I started envisioning legos and bare feet in the middle of the night for him…
This might be worth writing to his accrediting body about. “Doctor N attempted to prescribe care for a condition I did not have because he assumed that he already knew the results of a test that he had ordered and therefore did not read it. He is also prescribing calorie restriction as a cure for a cytokine signaling disorder.” But you might have to leave out that last sentence so that anybody who reads it doesn’t start mindlessly quacking–you know, “fat-fat-fat-fat-faaaaaat…”
Not a bit surprised. Disgusted but not surprised. I think most medical professionals suffer from a disorder called Fat-Blindness. It happens when upon first meeting a patient (usually female) that they feel she/he is just too fat. From that point on, in all interactions, they see fat first then cures for fat the actual patient. Sometimes you have to make three of four appointments to get to the actual reason for the medical consult as the first two will be openly or subvert covertly hostile. Trust me, if they don’t hand you brochures they are calculating your date of death by pounds while you tell them you real reason for coming in. It may take a few more visits to get past the fat-blindness, as this disorder renders the physician and nurses unable to hear what you are saying. You say: “I am having trouble with this and such.” and they hear: “I am fat blah blah blah, need to not be fat blah blah, help me, I am fat blah blah, I am going to die sitting here, fat kills blah blah blah.”
How do you know you have achieved success? When the correct tests or procedure get ordered, you get the medication you need, referral to a specialist with a minimum of comment about your adipose tissue.
Note: Do not assume they have heard anything you said. Take the ball and run with it, if anyone in our society needs to be Pro Active about their health and medical care it is us fat people. One doctor being a jerk is a pain, everyone of them coming straight from medical school and heading to barriatrics is a dangerous chain of events that can literally kill you by misdiagnoses, and with held treatments and assumed behaviors and the trenchant belief that if you are fat, you are A unhealthy. B gonna die like now, and C. too stupid to know any better or understand what they are discussing with you (Note: ‘at you’ is not a discussion, it is a lecture. You can pay 15 dollars and go see a lecture at your local community college. I recommend: Public Speaking, The Etruscans and How to talk to your doctor.
Here’s a hint, let them get the “No fat, try this pill, diet for life, join a gym, and sign up for these $$$ programs with a 98% failure rate are really good and you should try one…” out of their system, kindly pass on them and move the discussion back to your actual medical issue. Repeat as necessary. Still not a go, ask for a doc change, drives em nuts. For as much as they see us greedy gluttons, it never fails to amaze them that WE are the consumer and when not satisfied with the product, we change brands. doctors, doctors offices…
Princess Squishy is right on!