Misdiagnosis (you’re fat, lose weight) causes irreparable nerve and brain damage

Melanie writes:
I’m a 23 y/o female. I’ve suffered from multiple health problems my entire life and had 6 surgeries by the time I was 20. Even though most of my health problems were not weight related (I do have PCOS however) but genetic abnormalities and luck of the draw, my weight was always addressed. Doctors put me on my first diet at 6, and I spent many years being tortured by health professionals about my size as they “tried to help me”. One doctor put me on experimental medications to “control my thoughts about food”. Another told me I was lazy, pathetic, would never have friends, find love, be successful or pretty if I didn’t lose the weight – at the time, I was maybe 30lbs overweight, incredibly active and 10 YEARS OLD. Pretty harsh things to tell a 10 year old, but apparently it was supposed to be “reverse psychology”. After everything, doctors (and the rest of society) destroyed my self-esteem, I ended up with binge eating disorder, severe depression and I ballooned to 340lbs.

At 20, I started getting sicker and sicker until I was nearly debilitated by extreme chronic fatigue, headaches, pain, vision problems and motor control issues. I had to beg my doctor to send me for tests, and he did, but each time he told me it was all caused by my weight. Finally, I broke down in frustration and cried, asking for anything to help. He told me if I really was suffering as much I said I was, I needed to lose weight. I replied that I’d been trying. He said if I was serious, I should just be eating a few carrots for breakfast, lunch and dinner…and that’s it. I was taken aback and asked, “is that enough to physically sustain a person?”. Then he reached over, POKED MY BELLY, LAUGHED and told me that would sustain me for a year.

After a lot of google-ing and scouring medical texts, I found that my symptoms perfectly fit a rare, serious neurological disorder. I asked for the corresponding tests and my doctor sent me for them “to shut me up”. Guess who was right and now has permanent nerve and brain damage as a result of doctors’ fat discrimination prolonging my diagnosis?

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  1. Maura

     /  February 5, 2013

    Just curious about what your diagnosis might have been! Please share if you can. I’m so sorry you went through all that. It’s just horrible.

  2. I’m so sorry you went through this. It drives me nuts when doctors engage in “size profiling” (also called “fat distraction”….when the only thing the doctor sees and focuses on is fat and so they miss other issues). In fact, I’m blogging about this topic this week.

    If you don’t mind me asking, what was the name of the rare neurological disorder? One of my children has experienced symptoms similar to what you describe and we are having difficulty getting a diagnosis. It’s probably not the same, but I always want to be aware of the various possibilities out there. If you are not comfortable sharing it online, you could email me directly at kmom AT plus-size-pregnancy DOT org.

    I’m so sorry you went through this and were so badly treated. I hope you have written letters to the doctors involved so they can be given a chance to recognize how they failed you as a patient, in hopes of changing their behavior towards future patients. They may not change, but it’s important to point these things out whenever possible or change will certainly not happen.

  3. That’s such a horrendous thing to have to live through. It’s stupid that illnesses are so often ignored because of a person’s size – size should have nothing to do with it. Also, that doctor was ignorant if he believes that starving yourself will help. It won’t, because if you deprive yourself of the vital nutrients and enough food, your body will not lose weight because it thinks there’s a famine.

  4. The Real Cie

     /  February 6, 2013

    Sick, sad and wrong. These ignoramuses should have their licenses stripped. Neurological symptoms like you describe could never in any way be correlated with weight. And no, a person cannot gain proper nourishment from a few carrots. That doctor ought to have a carrot the size of the Empire State Building shoved where he keeps his brains. (Hint: it’s where the sun don’t shine.)

  5. JenC

     /  February 6, 2013

    This is the kind of thing malpractice lawsuits are made for. When something like this happens, doctors should face the consequences. Maybe making an example of one of them would help the others to learn some compassion.

  6. nancylebovitz

     /  February 6, 2013

    If you’ll excuse some advice…. The doctor was wrong about you needing to lose weight– doctors are frequently wrong, and one of the things they can be wrong about is what’s irreparable. I strongly recommend doing your own thinking and research about whether the damage to your nervous system can be at least partially healed.

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