That time you knew more about your disease than your doctor....
Updated: May 16
Is this you? If not, it SHOULD be! I can confidently say that I have a deeper understanding of my autoimmune disease and what my body needs to heal than a board certified doctor.
Honestly... I SHOULD know more.
So many of you needlessly suffer debilitating symptoms for a number of years before you are finally correctly diagnosed (mine was 6 years!).
It’s important to keep in mind that physicians have plenty of book knowledge about what’s happening to peoples’ bodies (there have been studies showing that physicians carry 2 million facts in their heads). But until they’re the ones walking a mile in our shoes, they have no clue about what daily life is like.
For example, a client of mine (we will call her Mary) lives with two debilitating conditions: rheumatoid arthritis and an immune system disorder called Sjogren’s Syndrome. Mary recently posted on Twitter:
“I am aware of more than my doctor sometimes, especially in my disease area. It matters more to me.”
Another study by Dr. Snow study already had a well-recognized diagnosis (Type 1 diabetes) that is covered in all medical school training – yet these educated patients still knew significantly more about the disease than their primary care physicians did.
Even worse, they then faced lack of support from physicians who felt threatened or undermined by their well-educated patients (who here has experienced THIS?!). There are many of us living with a diagnosis that most physicians are NOT as familiar with (like Addison's disease, or Asherson's syndrome, or Myasthenia gravis, or perhaps even Scleroderma).
Another circumstance happened to yet another client of mine, Lilli. At just 38 years old, she had a heart attack following the birth of her second child. But it took six full days of being repeatedly told by doctors “It’s not your heart!” – until she finally underwent cardiac catheterization and emergency double bypass surgery.
Having survived what most doctors believed at the time was a rare and usually fatal heart condition, she went on to learn, with our help, as much as she could about this diagnosis. She was even instrumental in convincing Mayo Clinic to undertake groundbreaking research – which suggested for the first time that her condition isn’t rare after all – it is just rarely correctly diagnosed.
How can your journey from patient to expert begin? Well in my words, as a patient myself:
“The process started as one furiously angry Momma who wasn’t going to take, ‘Get over it, you're just tired!’ for an answer one minute longer.”
As I remember saying these words out loud, it reminds me of a further dilemma facing women wit autoimmune diseases and chronic illnesses who do realize that they might be more knowledgeable than their physicians about their specific condition:
How can one communicate their expertise/opinions to doctors in a way that won’t get them labeled a “difficult patient“ or someone trying to undermine the doctor?
Despite this possibility, I encourage all clients to become as informed as possible about their own diagnosis, and to work in partnership with a physician they can trust (preferably functional medicine or naturopath if available). There is simply no excuse for not educating yourself about your health.
What I tell my clients and audience is that they must now become the world experts on their own particular diagnosis. Or as another of my clients once spelled out succinctly to her own physician:
“This is your career – but it’s my life!”
Wouldn't you agree that motivated patients are indeed capable of understanding complex medical information when it affects their own lives? The whole idea that patients are stupid is half the hurdle. Just because you are sick, doesn't mean you aren't intelligent or your brain doesn't function! I can Google, read professional journals, and ask questions of the experts.
And so can you.
I refuse to fault a doctor for not knowing more. After all, I am the one living this disease every single day.
The more knowledgeable I am, the more likely I can heal.
So, yes, I expect to know more than my doctor and I am perfectly content with that. It shows me that I’m worth it... I’m WORTH researching and understanding.
What has helped you to become an expert in your own diagnosis?
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