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How to talk to my doctor & share research/knowledge I have found?
Just Want to Talk | Last Active: Mar 18, 2019 | Replies (16)Comment receiving replies
@2011panc , @jk Volunteer Mentor, @grandmar ,
Thank you for your thoughts. It's difficult for me to talk to her frankly without bursting into tears because I feel so defeated. I want her to understand that this disease is progressive and disabling and I need her help. I also realize that ME/CFS is poorly understood and even reputable sources, including Mayo, haven't updated their websites with the latest recommendations, so her sources may be outdated too. I've been passively dropping hints about the CDC fact sheet, Stanford research and NIH articles, but I guess I need to be more direct. Thanks again.
Replies to "@2011panc , @JK Volunteer Mentor, @grandmar , Thank you for your thoughts. It's difficult for me..."
I'm sorry for your experience and relate to bursting into tears in the doctor's office out of frustration. I've done that in more than one setting & have found most health professionals are compassionate and understand. But I know how that feels to react in tears when I wish I was more articulate, as I had been before my diagnosis. Keep your research going, I am, since I have nothing to lose and potentially something to gain.
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@susangs I am so sorry you are dealing with CFS. I am in the same boat. In my experience in working with doctors, I have learned that they like to see the research articles. Unfortunately, I don't think there are any in medical journals yet. Printing that information from the CDC and actually handing it to her may be helpful. Doctors are extremely busy and may not take the time to look things up on their own. Be sure to include the part about the pathophysiological changes that affect people with CFS. Good luck! Don't give up! You are your own best advocate!