my brain malformation and fat shaming

Katrina writes:

As cheesy and cliche as it sounds, on June 25th, 2012 my entire world was turned upside down. I was diagnosed with Arnold Chiari Malformation, Type 1. Before my diagnosis, I was working five days a week, I had only fifteen credits left to obtain my Associates Degree, I was volunteering at a drug and alcohol rehabilitation center for women, I spent time all my free time working on my doula-lactation-childbirth education business, and I was enjoying being a newlywed. And then it was all gone.

The afternoon of June 21st I left work early with a blinding headache. My vision kept wavering on and off and I thought I was going to faint every time I stood up. My heart was pounding and it wouldn’t stop. I considered going to the hospital but, unwisely, I decided it was only a migraine. The next morning, feeling a little better, I tried driving to work. I looked up at the traffic lights and was startled to see two overlapping lights. My vision had suddenly doubled overnight.

I detoured to the urgent care and that was the beginning of the end of life as I knew it. The testing, the poking, the prodding began. The diagnosis of Arnold Chiari Malformation Type 1. A firm doctor taking away my work and driving privileges until we could get this sorted out. Seeing specialist after specialist, all of them unable or unwilling to take me on as a patient, some of them admit they don’t want to help me because of my weight.

It’s now been a year since my diagnosis. What I thought would happen – a neurosurgeon reviewing my case, scheduling my decompression surgery, and a few months of healing – has definitely not happened. My husband and I are facing the reality that I am going to be sick for a long time. Right now we are trying to save money to see a specialist in Colorado. I’ve been trapped in my home, my symptoms worsening every week, slowly watching my dreams crumble around me. Doctors see only “FAT WOMAN” and not “patient in need of help.” Every single doctor I’ve seen has either blamed my symptoms on my weight, suggested gastric bypass, or doubted me when I say for the millionth time, “No, I do not have diabetes.”

A little about Arnold Chiari Malformation: in this kind of malformation, the brain is too big for the skull. The brain squeezes through the hole in the bottom of your skull where the spinal column comes through (the foramen magnum). This causes cerebrospinal fluid to backup and put pressure on your brain and nerves. Fat has nothing to do with it. At all.

Some of the symptoms are:
-Headaches that are made worse by coughing, yawning, sneezing, laughing, etc.
-Muscle weakness and pain
-Sleep apnea
-Impaired coordination
-Vision problems

There is no cure for Arnold Chiari Malformation. You can treat the symptoms or have decompression surgery (a surgery where they remove part of your skull and sometimes part of your spine, brain, or the dura surrounding the brain). I am being denied treatment because of my weight. I want more than anything to get better and get back to doing what I love. I haven’t found a doctor yet who wants the same thing.

I have a video about my experience here:
My story is also here:

Update on Autism + fat = bad care from doctor

<strong>Danielle writes:</strong>

I’m autistic. Four years ago, I had problems because my doctor prescribed birth control pills which raised my blood pressure, wouldn’t believe it wasn’t because I was fat, and wouldn’t find me help with learning how to feed myself without eating the same thing every day.
Today, thinking about my progress over the past few years, I remembered that post and I realized maybe an update would be useful or interesting. If someone else had similar problems and happened on this, maybe it would be helpful. At least it might be a source of encouragement, because it’s proof that problems of this sort can be solved.
I’m still off birth control. As I’m getting older, my periods aren’t as bad as they used to be. I know now I can’t take birth control pills, no matter how much they help with cramps, because they send my blood pressure up, but it turns out that just getting older seems to be helping me. A double dose of over-the-counter painkiller makes them bearable and I rarely lose more than half a day to them.
I’ve gotten rid of the incompetent doctor who started the whole affair. As much as I’d like to take credit for that one, it was really just a matter of luck: He retired. Nowadays, when I go to the doctor, I get decent care that’s based on my health. My doctor now agreed with my statement that eating well and exercising regularly is much more important than weighing a certain amount.
I’ve partly solved the problem of eating the same thing every day, by introducing new things into my diet, so that now I choose from a range of possibilities for my meals. When I go shopping I buy one of several possible things for each meal, and I eat whichever one happens to be closest to the front of the cupboard when I go to get food. So for breakfast I might have cereal or oatmeal or coffee and toast, or I might grab a granola bar or a banana before I go out the door. Sandwiches are still a big part of my diet, but now I have cheese and meat or peanut butter and jelly on them as well as eggs. I’ve also discovered the beauty of frozen seasoned vegetables; I can just microwave and eat them. I still eat a lot of soup and pasta, deliberately choosing things with lots of different ingredients in them, such as a soup with meat and vegetables and potatoes in it, so that I cover all my nutritional bases. I plan shopping by writing on a white board whenever I use the next-to-last of a group of items, like whenever I eat two of the last four slices of bread. When the shopping list gets long enough, I buy whatever’s on it.

The suggestions given here were helpful in sparking the first ideas for solving my own problems. Not getting assistance for so long and having to cobble together my own solutions turned out to be a blessing in disguise. I’ve discovered that I actually have a talent for adapting things for people with disabilities–not just my own autism, but for other people, too. I want to make a career out of it, designing things to be used by people with disabilities. I’ve learned computer programming. There are so many possibilities for creating helpful apps on tablets and smart phones. And, unlike some rehab engineers, I know how useful it is to talk at length to the people with the disabilities you’re designing for. They’re usually the people who know best what they need, what works and what doesn’t, and what they’ve tried. I’ve seen more than one jury-rigged solution to the everyday annoyances of life with a disability, things that you’d never think of if you didn’t talk to the person with the disability that made it useful.

I’m also finally getting some help with daily living skills–but no thanks to the medical system! Instead, my university is helping me, having assigned an aide to help me with organization and planning and a counselor I can go to when I run up against a problem I need help solving. We’re also working at getting some more permanent arrangements through the state developmental disability department.

So… advice to anybody else who’s autistic, fat, and having to go it on their own: Be creative. Try stuff. Learn about how you think and use that to your advantage. It’s amazing how creative people with disabilities can get, when we need to be. Take advantage of that! Whatever problem you’re trying to solve, there’s probably an offbeat solution for it.

Four years after the first time I posted here, I’m 20 pounds heavier, still as healthy as ever, normal blood pressure, walking two miles a day and able to outpace most of my skinny classmates on a hike. I’m nearly done with my degree, and my GRE scores look good. I’m going to be going to grad school soon. Wish me luck! 🙂

It’s not your anemia causing this, it’s your fat (WRONG!)

Mary writes:
I work at my doctor’s office (which is a large clinic of primary and specialty doctors). 1 of our doctors has late hours which is great when you’re not feeling well and you don’t want to have to ask for time off to go to doctor’s appointments

I am very overweight but other than my weight I am in very good health. My cholesterol, blood sugar and blood pressure are all good. The one problem I do have is anemia which, when not managed, can be difficult to handle because if makes me very weak and tired.

I was having some weakness and some breathing issues so I went to visit my doctor’s nurse and when she told me that my doctor was leaving for the day she suggested that I visit the after hours clinic to rule out a chest infection and request that my hemoglobin be checked.

When I got to the appointment the doctor (who’s worked for our clinic for 10+ years so she wasn’t fresh out of medical school or anything, she was experienced) spent 2 minutes asking me about my symptoms then started asking me about whether I was trying to get pregnant, or if I ever wanted to have a baby. She asked if I was on birth control because my weight would make it too dangerous if I got pregnant.

Then she started asking me about what diets I’ve tried and whether my family was overweight. She lectured me for 20 minutes about my weight and how I needed to try weight watchers (which I had told her I was already doing, but she still insisted on being a 20 minute commercial for weight watchers).

I also found out that she used to be very overweight which gave me the feeling that this was the reason she was being so sanctimonious.

So 30 minutes after checking in she sends me on my way after insisting that she give me an order for an ultrasound to rule out DVT (because she said that my weight and the fact that I take birth control, which I reminded her that the Provera I take is only for 5 days a few times a year and only if my period is late, put me at risk) and I had to remind her that she never told me what she was going to do about my breathing issue to which she responded “Oh well, I guess I’ll order you a chest xray”. I never bothered asking for the lab order for my hemoglobin because at that point I was so humiliated about being lectured about my weight that I just wanted to go home.

I called my doctor the next day about experience I had and she ordered my lab. turns out that my hemoglobin was down 3 points which is why i was weak and having trouble breathing…not because of my weight.

PCOS? Birth control will help you lose weight (NOT!)

S A writes:
After some very terrifying abdominal pain when I was 15 (5’5″ and weighing about 150lbs), I went to the doctor. Both my pediatrician and an adolescent endocrinologist told me I had PCOS, explained that it was the reason I was “so overweight,” and lied to me and pressured me to start taking birth control. When I finally agreed to take it, they were thrilled and made it sound as if I was going to lose weight when I took the pill.

Over the next eight years, I gained about 40lbs. Whenever I’d see my new primary care doctor, she would warn me about my weight, and how I probably was pre-diabetic. Once, she ordered a bunch of blood tests for me without telling me that I needed to fast; I got an almost EXCITED phone call a week later saying I was definitely pre-diabetic. After she explained I needed to eat better and exercise more, and that I would need to start a new medication to treat it, I told her that I hadn’t been fasting when the blood was taken. Sure enough, when we redid the test, I was fine.

In the meantime, every time I asked about my birth control having an effect on my weight, I got the same answer: it doesn’t do anything to your weight. In the meantime, I was reminded constantly to eat right and exercise, even though I made an effort to avoid eating junk food, I walked 3 miles to and from work every day, and my bloodwork always came back showing I was spectacularly healthy. But every single appointment I had, I’d get lectured on how I was obese and I needed to take care of myself.

I tried to start running (thinking that it would make these doctors shut up), and I started having excruciating calf pain. After ruling out “running improperly,” we discovered I had an unusual orthopedic condition that would require surgery. To reduce the risk of blood clots from surgery, I stopped taking the pill. Two weeks later, I had my annual physical; I had lost 15lbs and had dropped from “obese” BMI to “overweight.” My doctor congratulated me on successful weight loss, but when I told her, “Actually, I lost all this weight in two weeks because I went off the pill,” she replied, “Oh, yeah, that’ll do it.” OH REALLY.

After being shamed for years by doctors who kept insisting that I was unhealthy, and who kept denying that the medication I was on had caused weight gain, I have since avoided going to see doctors unless I have to.

Come for anxiety therapy, stay for the diet plan and WLS promotion!

Anonymous writes:

My wife is in a therapy program for her anxiety disorder, and the program suggested that I come in for a family therapy session to better understand her problems. That took up the first 15 minutes of the 45 minute session. The next 15 minutes were devoted to some marital issues, during which the therapist didn’t really bother listening to what I found valuable about my hobbies, pattern matched “video gaming” to “addiction leading to ignoring wife,” and said I should cut back on it. But that’s just bad therapy.

The last 15 minutes somehow turned into diet and weight loss advice, brought up without any prompting by the therapist after she noted that she saw in my wife’s medical records that she had gone for a WLS consultation at one point. We hadn’t discussed weight at all earlier. My wife is trying to lose some weight to prepare for pregnancy because she has other medical issues, but I don’t have those issues, am not trying to lose weight, and in any case the therapist has no knowledge of me whatsoever. The therapist, certainly without any significant training in nutrition or metabolic physiology, suggested that both of us look into diet programs such as OA or Weight Watchers. I explained to her that I had no interest in diets or programs, as the most successful non-surgical program had a “success” rate of about 5% where success was defined as “sustained weight loss of 5% over a few years, and surgeries were a drastic measure where the dangerous side effects likely outweighed whatever health benefits came from it. The therapist told me, “Well, I think that was in the old days and it’s safer now.” For my wife’s sake (she was there because of anxiety, after all!), I didn’t start an argument.

The therapist then went on a long digression about how her brother called her fat once, and so she started just trying to eat half of what she had been eating and lost 30 lbs. (all she needed to lose!!) over the course of a year. Again, I’m biting my lip to keep from responding, “That’s nice, now try it when you have a genetic predisposition to gaining weight and you’re told you need to lose 100 lbs.” Or, “My numbers are fine except for high blood pressure, my cholesterol is very low, I’m not remotely diabetic, and you have no knowledge about my health whatsoever except that you can see I’m fat.”

During this period, the two of us said almost nothing, it was almost entirely the therapist talking (an interesting form of therapy, that!) Wrapping up, she went back to the actual reason for the appointment, and suggested that my wife should work on “making heavy–I mean healthy friendships.” What a Freudian slip! And so my wife comes in to work on her anxiety, and the solution is apparently to make both of us more anxious about our weight. Much more important than the mental health they’re actually supposedly qualified to treat, right?

B(ullshit)MI is useless as a marker of health

MN writes:
I am “normal” weight, but if appropriate wanted to share this experience of the uselessness of BMI. I understand if you feel it is inappropriate for this forum.

In college, I went to the doctor to get certain shots before traveling abroad. On the first visit, they marked me as 5’4”, 155 lb – which just put me over the line to “overweight” (BMI 25). Doctor warned me that it is important to maintain a healthy weight and to watch what I eat and exercise.

Some of shots required a second appointment. A few weeks later, I return to the same doc for follow up. This time, the nurse lists my height/weight as 5’5”, 155 lb – I am now “normal” weight (BMI 24). This amazing height gain of one inch resulted in the same doc telling me I seemed of healthy weight and probably didn’t have anything to worry about in that area!

All your problems are caused by being fat. . . .

Mlove writes:

In the mid-90s, I was married to an active duty Army officer and thus receiving medical care from the military hospital and clinic on the post where he was stationed (and where he worked as an emergency nurse). I had an old back injury from when I was in my teens and very thin (I was a gymnast). I had always had back pain, but began to have increased back pain and was concerned that I had re-injured myself. I went to the family practice clinic to which I was assigned, and saw a new civilian physician’s assistant. He insisted on focusing only on my weight (I had a BMI of 29 at the time), and insisted that if I lost weight I would have less back pain. He prescribed the Atkins diet. I told him I was a vegan. He then spent 20 minutes explaining to me that eating “all of those carbs” was the reason I was “obese” and that anyway there couldn’t possibly be enough protein in a vegan diet to support health. A few weeks later, my husband spoke about my unrelenting back pain to a doctor he knew at the hospital. One CT scan later and I was diagnosed with degenerative disc disease and given appropriate treatment.

Since divorcing my husband in 2001, I have had no health insurance and have been unable to afford regular medical care. However, after being sexually assaulted in 2007, I didn’t cope well with the PTSD and in 2009 my symptoms came to a head with a “breakdown.” I began to receive mental health care at the local free community mental health center. They obtained a grant to implement a wellness clinic on site. I now get basic health care services there, which is great, but I see a caregiver an average of 2-3 times before she or he is replaced by somebody else, since the doctors, physician’s assistants, and nurse practitioners who see patients don’t seem to stay around long. At each appointment, I am lectured about weight loss. I have been told that my migraines are caused by being obese. (They are not, they are part of a pattern I believe to be Multiple Chemical Sensitivity.) I have, of course, been told that my progressive neuropathic, joint, and muscle pain are caused by being obese. (I believe they may be fibromyalgia, along with my degenerative disc disease.) Essentially every complaint with which I present is explained away by my obesity. I am invited to join in on their yoga classes (thanks, I have been a yoga practitioner for over a decade and prefer to do yoga at home where I don’t have to worry about how I look when I do it!), bike rides, walking groups, etc. I am lectured on diet (I think I’ve done more nutrition research than all of them put together). Even after losing 45 lbs in the past year due to adding supplements to my diet that improved my Irritable Bowel Syndrome (because of my own research, not because they ever offered me any advice on that except, you guessed it, “lose weight,” even though I’ve had IBS since I was a skinny little kid), all I got from them was, “Keep dieting and exercising!” My blood pressure is healthy. My cholesterol is good; in fact, all of my vital signs and labwork are good. It is disheartening and depressing. I am grateful for Health At Every Size, Fat Nutritionist, Dances with Fat, and other blogs/websites/organizations that have helped me love my body no matter what its size.

Thanks for this site! It really made me feel less alone in being fat-shamed by my healthcare practitioners.

If you’re fat, it’s sleep apnea, not an illness of any kind. . . .

Katie H writes:

I consider myself to have been lucky in finding my current physician. Dr. Cat (not her real name) can be pretty blunt, and there is always that mention of weight, but it’s never been the focus of one of my visits. She knows I’m working to get my weight down, and rarely comments aside from “How’s the weight going?” I’m 25, 5′ 9″, and 235lbs, so we both know that my weight might put me at risk for other conditions. She knows that my other numbers – blood pressure, temperature, cholesterol, etc – are always either good or low, so it’s never been an issue. The few weight focused discussions usually involve something along the lines of “Keep doing yoga, watch for changes in mobility, and try not to gain.” Unfortunately, it’s sometimes hard to get an appointment with her because she is a good and thorough doctor.

In the spring of 2012, I had to go in to the urgent care centre on the first floor of Dr. Cat’s shared practice because I just couldn’t wait for an appointment. I’d been having some trouble breathing during the day, and I would go into yawning fits, usually when I started moving or after activity. I also was having trouble falling asleep because I felt like I was breathing too quickly; it had been going on for about two weeks. At the time, I worked in an elementary school, so I thought I’d just picked up some little bug from one of my students.

The problem began when I went back for the preliminary pre-exam tests. My temperature was in it’s normative range, which is kind of low (97.2), but not unhealthy. Then came blood pressure, which, I thought, was in a nice range: 118 over 68. The systolic was actually higher than normal – my normal is around 110 – but I figured it was okay because I was sick. The nurse, on the other hand, was not so accepting. No, she thought that she was getting an improper reading; my blood pressure couldn’t be that low. “Someone your size usually doesn’t have such a low bp,” she told me. She must have been getting an improper reading because of the fat on my arm, which meant she had to take it again on the same arm. And again on the opposite arm. And, when, by the third time, she was still getting the same number, she finally decided it was just a fluke. She concluded that it must be low due to whatever was making me sick, and ushered me in to wait for the consulting physician.

After donning a lovely paper dress, I was seen by a man who barely even glanced at my chart, despite having access to my entire medical history since tenth grade because the urgent care shared a database with Dr. Cat’s practice. He listened to me breathe for less than a full breath, the put his stethoscope around his neck and began the questions. Where did I work? Did I snore? Did I sleep on my back? Had ever been tested for sleep apnea?

I told him I was an elementary school aide, and that I spent a lot of time around very young children. I told him I’d caught one of my student’s colds about a month ago, but that it had cleared up pretty quickly. He interrupted me and repeated the questions about how I slept. “I sleep on my side,” I answered, “everyone in my family has a deviated septum; we all snore, but none of us have sleep apnea.”

Well, was I sure because, he said, “with your weight, it’s probably sleep apnea. That would make you tired during the day, too.”

I repeated that I wasn’t tired during the day, or at night; I was yawning uncontrollably, sometimes for nearly a minute, and couldn’t stop. I told him that I hadn’t been coughing or sneezing. I told him I felt like I wasn’t breathing in enough, and that it made it hard to sleep.

He told me to wait, and left the room. I waited for fifteen minutes. He came back in, and all but glared at me. “We’re going to give you a breathing treatment, just in case it’s something else. It’s probably apnea due to weight, though. The nurse will be in with the breathing treatment.” And he left, again.

The nurse came in a few minutes later with a large portable nebulizer and breather, and instructed me in using it. “You might cough a little, so here’s a cup.” She handed me a little paper cup in case I spit anything up, and left me to wait after the treatment was finished. Well, I did cough. I coughed until I had to abandon the tiny cup and run to the prep sink. I coughed loudly enough that both my mother in the waiting room and Dr. Cat, two floors up, heard me. I coughed until the attending physician and both nurses came in to the room, and then called in a second physician.

The second doctor looked in the sink, then back at me – still coughing – and asked if I could try to just take a steady breath so he could listen. I managed a few short, breaths for him before coughing, again, and he shook his head. “She has pneumonia. Put her on a z-pack.”

After a chest X-ray, the second doctor, who actually focused on my symptoms instead of my size, determined that I had walking pneumonia in both lungs, and that I’d probably gotten it as a complication of dealing with so many little kid germs at work. The yawning, he said, was my body’s attempt to get more oxygen. The second doctor told me that fluid had built up to the point where coughing too difficult on my own, and that was why the breathing treatment had triggered such violent, loud, and painful coughing. He put me on antibiotics, wrote a sick note, apologized for the how long everything had taken, and told me I could get dressed and go home. It fifteen minutes, the second doctor accomplished what the first hadn’t done in over an hour and a half. He even went so far as to chastise the first doctor for not noticing anything when he’d listened to me breathe.

I did meet with my usual physician, Dr. Cat, about a month later for a follow up, and she did have a recommendation for me: get a flu shot. I haven’t seen the size-focused doctor at all since last year, though the nurse still works there. I’m only glad that doctor tried to misdiagnose someone as stubborn as I was. I could have wound up in hospital or worse if I’d listened to his advice because both he and the bp nurse only saw me as a number on a scale.

Crohn’s disease? Congrats on losing weight during a flare. . . .

Rachel writes:
(I really appreciate your blog! I am not very overweight, but I still get judgment for it all the time, so I can only imagine what reality is like for other people. Ugh.)

I’m a 21-year-old woman and have somewhat struggled with my weight since hitting puberty (I was a 14/16 US in ninth grade). I’m not obese, but I’m tall and big-boned with slightly odd body proportions, making my current 10/12 size look bigger than it really is, though I’m really only a few pounds over my max healthy weight.

Anyway, I was diagnosed in the summer of 2012 with Crohn’s disease, a serious digestive disease that affects the way my body digests food and absorbs nutrients. Many patients lose massive amounts of weight because they literally cannot digest food. The way I cope with the debilitating pain and diarrhea is by overeating between flares – my body’s way of trying to make up for malnutrition while I can handle eating solid food. In other words, I look healthier than I really am.

After my diagnosis, I had a major flare that lasted the second half of the fall of 2012, and I was very sick.

However, when I went to see my gastroenterologist in December 2012 for a follow-up appointment, the intake nurse (his medical assistant) took my weight and then CONGRATULATED me for losing 10 pounds!

She is a specialist in gastrointestinal diseases! She of all people should know that such rapid weight loss in a Crohn’s patient is a sign of serious complications!

I still struggle with guilt because I have Crohn’s disease and yet am still overweight.

(PS: She was not exactly thin herself, either!)

Gastric bypass for sleep trouble

Anon. writes:
I was feeling unusually tired and out of energy. My GP told me to diet and exercise, and take iron supplements. I tried this for months, but it wasn’t making much difference. I talked about it with my mom, and she told me she has sleep apnoea. She asked if I had considered this. I am a snorer and being overweight can make sleep apnoea more likely, so I thought this might be the problem. So I finally went back to my GP and got a referral to a sleep clinic.

After an assessment, I got to do a sleep study where I’m monitored throughout the night to see if I stop breathing. I talked to the doctor in the morning after the sleep study. It turns out I didn’t stop breathing in the night so they could rule out sleep apnoea, but he said he thought my weight could still be keeping my energy down.

So I asked him “If it’s not sleep apnoea, then how could my weight be affecting my energy the past few months when I’ve been this size most of my life?” He said he didn’t know, but people who lose weight usually “just feel better.” I told him that I have been making an effort; I had been restricting my calories to lose one pound a week and lost 10 pounds. He said that little amount of weight loss was unlikely to make much of a difference, and often after diets people just “balloon back”. He asked if I would like to be referred for a gastric bypass. I was shocked, and told him I thought that was a serious decision and it’s not one I would take so lightly.

At the time of the sleep study, I had a BMI of 36. I’ve lost another 10 pounds I’ve lost since then, and I have moved me from the “morbidly obese” BMI category to the “obese” category. It’s a challenge, but I’m still losing slowly and healthily. No gastric bypass required, thank you very much. Oh and it turns out the tiredness was due to seasonal affective disorder. I’ve got a sunlamp and vitamin D supplements and have since been feeling much better.