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I’m pleased to feature this article by guest author Sharmyn McGraw. As a thriving survivor of Cushing’s Disease, a life-threatening pituitary disorder, Sharmyn has personal insight into the plight of patients seeking health with the odds stacked against them. She has facilitated the nation’s largest Pituitary Patient Support Group, under the direction of Daniel F. Kelly, M.D. at the Brain Tumor Center at St. John’s (www.brain-tumor.org) in Los Angeles for over 9 years, educating both patients and doctors about pituitary diseases and the patients who have them. For Sharmyn’s story and more information about hormonal disorders, visit her website: www.hormones411.org.
The Road To a Healthy Recovery – What Does That Mean?
Over this past month, I have had a lot of calls and emails from people seeking my suggestions on how to ask their doctors about getting tested for a possible pituitary disorder. Others have asked me why they are not doing better, now that they have had surgery.
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Sharing ridiculous comments made by doctors can be a bittersweet form of validation for patients.
For a little bit of fun (I figured we could use it), I initially created a discussion thread on the National Organization for Rare Disorders (NORD) Community Forum with this title, and it turned out to be a popular place to share crazy-making comments from health care professionals in dire situations and sad circumstances. Being able to find some humor it in seems to mean a lot to patients just trying to feel better…
I’ll kick off the list with a couple of my favorites…
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What have you learned from your health care experiences? Are you:
- a patient who is undiagnosed, searched a long time to get a diagnosis, received a wrong diagnosis, or have a diagnosis and struggle to get effective treatment and support?
- a health care practitioner who has learned through experience valuable information that you wish more patients knew?
- a patient advocate or support group leader?
- a health care support worker in health insurance, pharmaceuticals, medical device manufacturing or clinical laboratories?
- a life coach, psychologist or medical coach?
I’m writing a book…
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When the movie “The Secret” came out, and then I read “The Law of Attraction” by Esther Hicks, the revelations they revealed put together a lot of pieces for me, turning my approach to life upside down. In my own words, understanding the Law of Attraction taught me “the science of how God answers prayers”. I learned that what I put out into the world, I got back. I could see how deep-seated feelings, which sometimes I wasn’t even aware that I had, generated thought patterns that were attracting positive or negative experiences toward me.
Although I have successfully applied my new understanding to many aspects of my life, it has taken almost 30 years for me to get clear on my health. From the age of 14, when I first developed unexplained symptoms, until now at the age of 42, I have seen over 100 doctors. I’ve tried traditional medicine, Eastern medicine, chiropractic, raw food diets, intensive exercise, discontinuing all medications, taking many medications, taking herbs and supplements, fasting, different spiritual faiths and practices, counseling, and ignoring symptoms entirely. Only recently have I realized that I attracted in my experiences of poor health and disappointing doctors through strong feelings and prolonged thoughts that defeated my best intentions.
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Imagine sitting in an exam room waiting for a doctor you haven’t met before to walk in. Whether you’ve got an unexplained stabbing pain in your side, crippling headaches or life-threatening heart problems, you’re hoping he or she will be able to figure out what’s interfering with your quality of life.
Not only are you in physical distress, you’re probably nervous because you’re there for an answer, and you’re not sure you’ll get one… or at least, the right one. And if you do, there’s no telling whether the answer will ease your pain and calm your fears or increase your pain and confirm your fears.
The person that walks through that door with the white coat on could be kind, compassionate, intelligent, respectful, intuitive, knowledgeable, honest, experienced, responsible, willing, curious and thorough. Or they could be rushed, stumped, bored, ignorant, insensitive, rude, impatient, dismissive, harsh, deceptive, arrogant and careless. When there’s so much riding on one 15-minute interaction with another human being, it makes sense to expect the best and be prepared for the worst…
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Getting doctors to take a health problem seriously can be one of the most significant hurdles undiagnosed patients face. This is because primary care, specialty and emergency room physicians have their own hurdles to clear before they can truly hear what a patient is saying — and do the necessary amount of digging to find the true cause of an ongoing undiagnosed condition. Here are 10 reasons a doctor may dismiss your symptoms… or you…
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An appointment with a doctor is a lot like an audition for American Idol. Here are some tips and insights that may help you make it to the next round…
- Like any audition, you have a brief slot of time during your appointment (for which you may have waited weeks, months or years) to persuade a doctor that you are worth taking seriously. You may have been to many auditions before only to find yourself still seeking your big break.
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Are you a health care professional who’s tired of treating as many patients as possible in 15 minute intervals? Are you looking to make a difference, the way you always wanted to? Can you write scripts and order tests as you see fit? Then perhaps you have a future as a personal medical coach.
An undiagnosed patient for more than 20 years, I have a complex case with overlapping symptoms. Like many patients in my situation, I’ve seen over 100 doctors, and made some progress in managing some of my symptoms, but am still living with a painful, disabling condition. I have starting to realize that perhaps the only way I’m going to find a diagnosis is to hire a personal medical coach to sit down with me and help explore my options – or at least let me know what I’m working with.
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My friends tell me I should be a doctor. I would love to… if only I felt good enough to go to medical school. So instead I watch House, Diagnosis X, Mystery Diagnosis, Mystery ER and other TV shows that make me feel like an expert when I can diagnose the patient before the 100th or so doctor finally does.
In one episode of Mystery Diagnosis, an ER nurse comes down with a mysterious malady that interferes with her ability to work and live daily life. In the course of trying to find out what she had, she was met with indifference from the very doctors she worked with. At one point, she asks the camera “Where is the medical curiosity?” To me, this said a mouthful…
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