Lack of insurance and biased doctors hurt us

Amanda writes:

Hi guys,

My story isn’t necessarily about discrimination, but I do feel like I have to put the whole thing out in the universe, and in writing it down, maybe it will help to relieve some of my anxiety about what is to come.

I should start from the beginning. I have always fluctuated in weight, in a range of 50 pounds or so. When I was 16, I got pregnant, which caused me to become extremely sick, way beyond the scope of normal. I lost about 30 pounds in the three months that I was pregnant, which brought me down to about 110. A lot of tests were run, and they ended up telling me that it was a “fluke” that I got pregnant in the first place, that I wouldn’t be able to carry to term, and that if I ever got pregnant again, which would be highly unlikely, it would almost certainly end in a miscarriage. All I remember them telling me at the time for the reason is that my uterus is tipped- if there was another cause, they didn’t tell me or I don’t remember.The reason for this portion of the story is because I stayed really sick for several months after. My doctor got frustrated with not finding out the cause and told me that I was making it up. Three years later, when I was 19, my weight was up (at 165 or so, gained over about 2 years) and I had skipped my period for an entire year. I went to the same doctor and he put me on Depo-Provera, and that was the last time I went to see a doctor. It was shortly after that that I started getting man-like facial hair on my chin.

I am 32 now. I lost that weight when I was 20 over a three or four month period, which brought me back down to about 110. I stayed steady for about a year and a half and then I gained weight over the following two years, maxing at 185. I didn’t keep that top weight for more than 6 months or so, and I lost it over a few months leveled out in a 135-145 range for the next 6 years. That puts me a few months before my 30th birthday. Out of nowhere, I gained 50 pounds in a month and a half and another 30 pounds over the next month and a half, for a total gain of 80 pounds in three months! I immediately lost about 20 of it over 2 weeks or so, bringing me to hover around 200. I jumped from 140 pounds to 220 pounds, and I was devastated. I literally wore a pair of jeans, did laundry, and couldn’t pull them up past my thighs the next day.

I didn’t have insurance, and I have an irrational distrust of the medical field, so I didn’t go to the doctor right away. Several things have happened over the last two years that made this time so much different than any before. First, I still weigh 200-210. I have never gained that much, or gained that fast, or kept it on for this long. My ankles started swelling like crazy, and then I got a kidney stone (two, I think). I still didn’t go. I have developed sores on my legs and skin lesions that don’t heal (my saving grace is that people can’t see it). Several months ago, My pinky and ring finger on my left hand went numb. It stayed that way for a while, and the sensation is still a little bit less in those fingers than the rest of them. A few months ago, I woke up and went to get coffee and I almost dropped my cup because my hands just kind of decided that gripping things was not going to work. That lasted for about two weeks, and my hands were so swollen and sore I felt like an invalid. I’m sure there are things that I am forgetting.

I recently signed up for insurance through my job, and I finally went to the doctor a couple of weeks ago- an internist. He did end up listening to me, but I had to convince him that I wasn’t just a fast food eating fat girl whining about being fat and not wanting to diet. He ran blood tests for thyroid, diabetes, and cholesterol, and had me schedule an ultrasound. My thyroid levels were slightly elevated, and my blood sugar and cholesterol were both on the high side of a normal range. They called me this week and said that the ultrasound didn’t show any ovarian cysts, but they need me to come back in right away to discuss the results. When I was there for my initial appointment, he said that he thought I probably have hypothyroid and polycystic ovarian syndrome, which is what I have thought for years. He said he wanted to rule them in or out before he tested for Cushing’s. I’m kind of scared. Not of cancer or a tumor or dying- I can accept that. I am scared of being sick for the rest of my life. Of having to possibly come to terms with the fact that I just turned 32, don’t have any children, and might have to have a hysterectomy. And, the vainest of them all, of staying fat permanently.

Through the years and my personal experience, though, I have noticed that the way people treat women is directly linked to their weight bracket. Interestingly, it isn’t the men that treat you like garbage. It is the women that judge you and talk about you and exclude you. It doesn’t really matter that you *used* to be a pretty girl. What matters is that you are now the fat girl.

That is my story up to now. I have an appointment scheduled for Tuesday, so I guess it is a waiting game. It doesn’t really matter to me if you publish it or not. I really just needed to release it, because it is destroying me.

Thin or fat, we all get the “lecture” about weight loss, exercise, eating habits

D writes:

I just want to start this with a bit about my personal history. I’m a pretty average-sized person, but I feel like HAES has had a huge positive impact on my life, especially as I was recovering from an eating disorder. I just want to share it as an example of how fat phobia and fear of weight gain impacts people of all body types.

My sophomore year of college, my family switched GPs. At the time, I was recovering from an eating disorder, during the course of which I’d lost a significant amount of weight, putting me just barely outside the category of “underweight.” I hadn’t really shared my mental health problems with my family’s GP, but I was nervous, I guess, and because my weight was still technically “normal,” my eating habits were never flagged as a problem.

Flash forward to the first visit with the new GP. All of that year at school, I’d been focusing on eating healthy, regaining the weight that I’d lost, and strength training and functional fitness. I also hadn’t weighed myself in about a year. When it came time to take my weight for the physical, the new GP asked me to tell her what I thought my weight was/had last been when I weighed myself. I don’t know if this was because she didn’t actually have my chart from the previous GP, or if she just thought it would be fun to embarrass me. At any rate, I guessed a number ten or fifteen pounds higher than I’d been the last time I weighed myself.

It turned out I weighed probably ten pounds more than that. This triggered an unending discussion of how being away at school was no excuse for gaining weight, how I needed to be eating healthy and exercising, etc. When I described my actual exercise routine, she basically accused me of lying. This wasn’t on a par with the misdiagnoses some people have written in about, but I felt so crushed to have spent the whole year trying to gain weight and become stronger, only to have a physician insist that my eating disorder was actually “healthier.” I haven’t been back to that GP since, but the same woman has constantly bullied my mom about her weight, even though she is perfectly healthy.

Let’s Ignore Why You Came Here And Talk About Your Weight

Christa writes:

Since I was seven, I had been going to the same doctor’s office for 20 years. In the entire time I had been there, the only comment any doctor had made about my weight was after I had lost twenty pounds. She asked what I was doing to lose weight to ensure it was still healthy and cautioned me against losing too much weight as my goal would put me too low on the BMI.

I recently moved, however, and realized I needed to find a new doctor when I got an infection in my sweat gland. The infection most likely came from shaving and antiperspirant, something I learned through research on my own.

When I arrived at the doctors office, they did the regular rigmarole, weighing me, taking my blood pressure, taking my temperature. I sat in the examination room for fifteen minutes, and a small woman comes in to talk to me about my infection.

Actually, we mostly talked about how I was overweight. The blood pressure reading showed that my blood pressure was slightly elevated on a single number, which meant I might be pre-hypertensive. My previous doctors never thought it was something to worry about, and even this doctor noted that a single reading couldn’t be used to determine a problem.

What we didn’t talk about was how to avoid getting infected sweat glands in the future

No exam necessary – I can tell by looking at you.

Melissa writes:
That’s what I was told today when I went to see a surgeon for a follow-up to an emergency room visit I made last week because of a gallbladder attack.

The ER people were great. Within an hour of getting there, I had an x-ray and ultrasound done, blood and urine samples taken for testing, and was given pain and anti-nausea medication. After everything was looked at, I was told I have gallstones and an infection in my gallbladder, and that the likely outcome was having it removed. I was given prescriptions for two antibiotics and a painkiller, and sent home with a referral to a surgeon to discuss my options.

I called the surgeon when I got home and made the appointment. Today was the appointment … from hell.

The first red flag should have been when I pulled up and saw advertisements for his Botox and laser treatments. What sort of surgeon needs to make $$$ with that stuff? I get in the office, and am sent to the exam room. There is no examination. No one takes my pulse, temperature, or blood pressure, or looks in my ears, eyes, and throat.

The doctor walks in and tells me nonchalantly that he has not gotten my records from the hospital. He pooh-poohs the diagnosis of an infection, saying “they” always give antibiotics to gallbladder patients. He asks if I’ve ever had problems with my gallbladder before, and I tell him that I have. He asks me what I want to have done about my gallbladder. I reply that whatever needs to be done to keep me from experiencing another attack and getting another infection is what I want.

He then proceeds to tell me that he doesn’t think I need my gallbladder removed. He asked me if I would be willing to consider weight-loss surgery. I replied that it would take a lot of information to get me to consider it. He told me that my gallbladder problems are caused by my weight, and that I have a fatty liver. When I asked how he knew that without my medical records and without examining me, he said he could tell by looking at me. I told him I expected to be treated with medical care that is based on science and evidence, and he insisted that his diagnosing me with just his eyes was evidence-based medicine. At that point, I guess he realized he didn’t have a sucker or doormat sitting in the exam room with him, and suggested that maybe he wasn’t the doctor for me. I agreed heartily, and left. At least I got my co-pay back, and kept my spine.

Complaints are being made to the hospital, insurance company, and state medical board. “I can tell by looking at you” is not an acceptable level of care when a patient comes to you in a potential crisis.

Near-fatal fat bias by emergency room doc

Erica writes:

I’m in the not quite thin, not quite fat range. I’m considered lean by my doctor who is really nice about weight as per my husband who is slightly overweight, but in excellent health. I’m built sturdy and gain/keep muscle mass easily. I grew up very involved in sports, possibly to a negative. I was adopted as a 9 month old by my amazing family who enjoy being active. But, my biological parents were/are addicts to extremes, and I just replace their drug addictions with exercise and food choices (vegan, 80% raw diet) so I got the addictive personality. But, exercise has given me very powerful legs and upper body – which means my “basic” BMI is 32, but via calipers, I’m around 21. I’m just not built to be petite. I have gotten to my BMI maximum recommended weight, and that was from 3 marathons in 8 days a few weeks prior to a very icky round of upper respiratory crud so I didn’t want to eat because I couldn’t smell or taste much, so I ate something that resulted in major gastric hell. That low stopped my menstrual cycle for 7 months, even after I put weight back on. That’s just background so you can hopefully see why I’m writing in.

Doctor hell was so nasty to me, I can’t imagine what it’s like if you are heavy.

DH and I were rear ended by a drunk driver with a BAC of 0.37. I instantly braced my arms forward as we were shoved into oncoming traffic and my door took 90% of the inactive, spinning us into a head on collision. I got a fractured wrist (left), a severely sprained and dislocated wrist (right), dislocated elbow, shattered right patella with nearly all knee structure gone, bone bruises, the billion other bruises, cuts and general soreness. But, worst damage – lacerated liver, smushed kidney and exploded spleen. Ambulance crew was awesome – one claimed I was light. ER nurses were great. Surgeon was great, and he was dealing with a nasty mess so I wouldn’t have cared if he complained about my weight.

ER doctor was the nastiest jerk. My arm was too fat to reset. My abdominal swelling wasn’t that, I was just obese. Nurses were horrified and ran to get DH and
another doctor. Doctor took a three second glance at me and sent me straight to surgery. He let DH sit on my stretcher on the way because he wanted to make sure DH would get a chance to say goodbye.

Fat bias very nearly killed me. But, no other doctor prior or since has claimed I am as morbidly obese as ER jerk felt. He was a social menace to any potential patient. Thankfully for me, he’s no longer in my state. But, I am sorry to whoever has to experience him now. He never wavered from the fat claims.

So, that’s my experience. It’s not common in my mind, but that’s probably related to my limited experience. I can’t have a clue what daily verbal abuse is like because I’ve not experienced. But, it worries me. If I’m morbidly obese, what is healthy? What is the normal weight then? Apparently it’s 100 pounds or something. And that teaches children to obsess to avoid being less than ideal.

10% survival chance because it was better to ignore clinical signs and the paramedics explaining exactly how I got so hurt. On scene started me at 99.99% survival. Which stayed pretty stable, was getting pale and shocky but I was coherent and guess was adrenaline crashed. Intern was starting to think I had the liver laceration, got Dr. Pompus Jerk to check me, thinking I was getting worse, maybe around 70%. Jerk poked me, started the abuse, nurses got help within 3 minutes. And then it was 10% and saying goodbye was a very serious reality. DH has never been able to listen to Last Kiss by Pearl Jam since. It’s too close to what happened. Now, he won’t leave without a snuggly kiss and hug, and I get rather Tigger bouncy when he’s home.

Self-esteem issues? Tough shit, you’re fat and you’re not doing anything right.

ITladyJ writes:

TW; Borderline ED
When I was young I was skinny, mostly thanks to ADHD medication. When I was a junior in high school I went on birth control…lo and behold, the things I was allowed to “get away with” caught up with me. I am currently 5’3″ and in the neighborhood of 165-170.
Over the past year, I began really obsessing over my weight. How I managed to avoid starving myself, puking and making myself run until I collapsed when a chorus of voices in my head told me to just do that…I have no idea. I would verbally (silently and out loud) berate myself. I’d slap myself, call myself names…and just mentally attack myself. I can be sweet and compassionate to others, but I was a demon to myself.
I couldn’t think about anything else. I felt lost, and hopeless. I even told myself that my boyfriend of five years (who has been nothing but loving, supportive and awesome) really didn’t love me and was going to leave me for someone better if I didn’t lose weight. Just awful stuff.
My mother told me to get help. So I found Jan the counselor, who is one of the best people to ever walk the face of the earth. Not judgmental, loving, supportive, was able to encourage me to find exercise I liked, eat healthy in a way that fits a busy working/college life, and (most importantly) work on building myself back up. I ate healtheir, walked more, and even started going to the gym on campus (at least 1x week). When I went to go see my PCP I figured she would be pleased to know about my progress.

A few weeks before, I felt moved to go run around a few blocks in town. Usually I despise running, but this felt good. Then my legs hurt like hell. My neighbor (a physical therapist with a doctorate) figures it’s shin splints. She tells me to take it easy, eventually build up to running, and suggests exercises that won’t, um, make it worse. So I discover the elliptical and fall in love.

I told my doctor about it- proudly telling her how I am eating a healthier diet, working out, taking vitamins…etc.

“Everyone gets pain in their legs when they run.”
It all went downhill from there. I get a big lecture on how I need to start running, drop weight, and she orders a whole panel of blood tests to make sure my cholesterol/blood sugar/thyroid/metabolism are okay (a few years ago when I wasn’t as healthy, but was skinner, my numbers kicked ass). My BP was 120/90 (which is within normal range) but she insists that I return in six months to have it checked again, and let me know that she expects my weight to be down by then.
“Have you had breakfast today?”
“No, I didn’t get to grab breakfast yet.”
“Good, you can do the blood test today.”
(Did I mention that I am terrified of needles?)
I left that office in tears, feeling defeated… why bother? Didn’t she realize that “no pain no gain” is outdated and dangerous? What part of “I’m seeing a counselor due to self-esteem issues” did she NOT hear?
I spent the better part of an hour after that appointment, calling my mother, calling Jan (who was away-and glad that I had the presence of mind to contact her), and trying to figure out how I’d get through the blood test. Finally I composed myself enough to go in, and get it done. The tech was one of the sweetest people when I explained the situation. She talked to me so I’d be a bit distracted and gave me a hug afterward (and of course, I begin to weep again).

Tomorrow I should have my results in. Due to ADHD medication, I’m shackled until I can find someone who can handle that until my appointment with a new person (who my mother recommended). If I have to go back for the results, I can’t wait to either:
-see that maybe my thyroid is messed up and be able to fix it
-see that my numbers are fine so I can tell her to fuck off.

(Sorry for the language).
(cross your fingers for me).
Update
My cholesterol was excellent, my thyroid is normal, and my glucose was normal.
:)

Obesity causes cancer (Really? WTF, I mean, really?!?!)

CH writes:

My mother-in-law passed away 2 weeks ago. She was an amazing woman and will be missed immensely. I have been helping my father-in-law get some things sorted out relating to creditors. One of the hospitals requested a copy of her death certificate, which I hadn’t seen until yesterday. Here’s what it says:

CAUSE OF DEATH

Stage III C1 Mixed Mullerian Tumor of the Uterus [Onset: 4 months]

Due to (or as a consequence of): Morbid Obesity

Excuse me? So now obesity causes cancer? Does the media need to be alerted to get the word out that cancer is caused by being fat? We can completely eradicate cancer by putting everyone on a diet!

I am so disgusted by this. I feel like they (I’m not sure who “they” are, however) wanted to get in one more dig about her weight. I don’t see how that has ANYTHING to do with the cancer and complications from cancer surgery that ultimately led to her demise. It sickens me that an amazing person such as she was can be reduced to just another fat person who wouldn’t go on a diet.

Narrative Inquiry in Bioethics journal call for stories

The Narrative Inquiry in Bioethics journal at http://www.nibjournal.org/authors/documents/Obesity_Call-final_000.pdf has a call out for stories from those of us who are fat. I’m not sure what kinds of stories are being solicited, but I’m sure that’s listed at the above link. They want stories from us so that they can make sure stories are submitted that diverge from the usual diet commercial narrative that is told about fat people.

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.
-Tinnitus
-Dizziness
-Nausea
-Muscle weakness and pain
-Sleep apnea
-Impaired coordination
-Dysautonomia
-Numbness
-Vision problems
-Depression
-Anxiety

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: http://youtu.be/HLBzLMzxfKs
My story is also here: http://www.gofundme.com/39hoes

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! :)

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