This morning a story on NPR, How the Modern Patient Drives Up Health Care, made me cringe and left a twinge of fear. I feel that the message especially puts Lyme patients at risk because of the resistance of doctors to recognize and treat the illness. When it was over, I turned to my twelve year old daughter who had also been listening and said, "If we had just accepted our symptoms as something that could not be changed, we would all still be very ill."
She agreed. Thankfully, we researched, advocated, and we're slowly regaining our health.
I left the following comment at NPR's website.
"In 2004, I was misdiagnosed with Lupus. The Lupus medications compromised my body's ability to fight my true illness, Lyme disease, as well as compromise the tests for Lyme. If I had simply accepted my original diagnosis and decline, not analyzed my blood work and symptoms on the Internet, I may not have lived to write to you. An earlier diagnosis would also have saved countless tests that were ordered by my physicians during that time. I was fortunate to have been trained as a scientist, yet it still took years to reach an accurate diagnosis for myself and my daughters. Doctors are not infallible. If something is wrong and you are not responding to treatment, you must educate and advocate for yourself. I recognize that a passive patient may be easier for a doctor to treat, but doctors should be open to accurate relevant information. Both physician and patient will be better for it."
My best to all of you.
Thank you for writing about your experience. I, too, have often thought about the 'what ifs'...what if the doctors had been able to diagnose me correctly with Lyme disease all those years ago. So many expense procedures and tests wasted.
ReplyDeleteThe fact was that I had many doctors who just didn't know what was wrong with me, and told me so, which is equally as frustrating.
Keep writing!!
What if doctors were able to accurately diagnose Lyme sooner? How different each of our lives would be. So many doctors didn't seem to know what to do with me, either. I hope with movies like Under Our Skin and Under the Eight Ball and so many of us sharing our stories, that won't always be the case. Thanks for the encouragement!
ReplyDelete