Turning Straw Into Gold

Life through a Buddhist lens

Finding the Health Information You Need on the Internet

The first dermatologist said, “When you get home, don’t look up this condition on the Web because you’ll get too much information and you’ll become confused and scared.” The second dermatologist said, “When you get home, look this condition up on the Web because you’ll want to learn everything you can about it.” Argh!! What’s a patient to do? Read More

Medlineplus.gov

I work in a hospital library and this is something we run across all the time. The first website I always point people to is www.medlineplus.gov. It's a free (no ads allowed) website from the National Library of Medicine. It has oodles of information in English, Spanish, and other languages and is written at a 6th grade reading level.

Thanks Brenda

This looks like a good resource. Thanks for adding to the discussion. Warmly, Toni

I just looked up some very

I just looked up some very basic information on this site ,there are several pieces of such i use to verify how good a site is.unfortunately the answer was well out of date/only partial and leaves out significant information
my experience is that many highly recommended sites contain misleading /false information,and sorting whats what is !!dont mean to be negative -I will use this site anyway so thanks for posting it.:)

Passing along internet info to your dr.

I have found myself, seeing many drs.and specialists during my 9 yr. illness(s), no matter how matter how diplomatic you are, all doctors disregard most info. that you bring in from off the internet. They may give it a once-over, but then put it aside and rarely want to discuss or have anything to with what it says. They then go on to ignore it and if you try to bring it up again , diplomatically of course, that's when they try and wind up the conversation to the end of the appointment to disregard it entirely. I have just given up and don't do that anymore! It's a waste of time printing it out and bringing it !

My GP is open to Internet stuff

I agree that he's the exception to the rule, but he reads what I bring him. Lucky me...even though he can't "fix" me anyway!

Beware web advice; check out the source carefully.

Excellent article again, Toni! In the endnotes of my book (Multiple Sclerosis an Enigma)I also categorized info on web as more likely reputable with a .org or .edu suffix, as opposed to big pharma's .com articles.

Thanks for sharing these tips for all.

Thanks Terry

I'm glad you liked the article and that we're on the same "wavelength" re: website addresses.

And thanks for your kind comment on my Oscars article too!

Warmest wishes,
Toni

excellent info

excellent information Toni...I have found the same to be true in my research for myself and things that come up for my children's health as well. Thanks for posting this. And yeah, it can get pretty scary sometimes reading the possible side effects of meds or disease progression. Ultimately we have to trust our own wisdom in partnership with our medical practitioners. We usually know if something is or is not working...these are our bodies that we are living in after all!

gentle steps,
Laura

Thanks, Laura

I so agree—that we should trust our bodies. We seemed to have unlearned that skill for some reason! I'm glad you mentioned your children, too. All the same cautions and tips would apply! Love you, Toni

Thank You

Hi Toni, Thanks again for a resourceful article. I agree and have come to the same conclusions when it comes to looking up illness on the internet. If one spends too much time as you had said, it can become utterly depressing. I also feel the online support groups are all the same. Yes, even the Facebook ones. They all start out fine, and then eventually even though the rules: "to promise be nice" someone posts a rude comment. I have spent way too much time letting these types of comments hurt way to much from complete strangers. I want so badly to connect with others who are also suffering from FM/CFS however I can't seem to find a connection or a place where I fit. How do you handle rude comments from people? Besides being ill, I am also HSP and I feel this probly contributes.

Thanks for your comment, Val

I know what you mean about Facebook groups sometimes deteriorating. Did you know that some people started a group inspired by my book? It's called How To Be Sick Together. You'd find it through a Facebook search. It's a closed group, so you ask to join and one of the moderators will approve it (actually I'm a moderator too although I don't have a lot of time to spend there). From what I've seen it's a very upbeat and supportive group. You might give it a try.

I've had some rude comments I've had to deal with -- I guess you can't have a book in print or write regularly like I do here without some people getting upset. I try to recognize that my knee jerk reaction (which is to feel angry or hurt or both!) is just that -- a knee jerk reaction. Then I go to various equanimity practices. I may try to recognize how much that other person must be suffering to have been so rude to me. I may say to myself that the world is full of people of every make-up and some aren't so skillful with their words. I also take compassionate steps to protect myself, whether it be deleting the comment (if it's a personal attack) or just leaving that webpage.

I hope that's helpful.

Warmest wishes,
Toni

Such good ideas, Toni. Thank

Such good ideas, Toni. Thank you. Can I offer one more?

I determined early on that my rheumatologist might not respond well to any article I would give him. Instead I studied my disease including research articles from PubMed. Then I developed questions and after a couple of appointments and emails, he seemed impressed and even said "You ask good questions."
When he referred me to another doctor, that doctor - who I had never met before - met me with the comment "I know you know a lot about your disease"!

I always look forward to your posting, Toni. Thanks.

Great idea, Judy

Developing questions helps make the doctor feel like the expert. What a great idea. And, you and your doctor learn more about your illness that way. If you have my book, look at the experience I had with an infectious disease doctor where he invited me to do research and send it to him ahead of the appointment. Then at the appointment he curtly told me he hadn't had time to read it...and he never did read my carefully crafted (and short) email that summarized the research. Sigh...

Warmly,
Toni

I do have your book and

I do have your book and remember that story. I found it quite unbelievable then and still do.
While I really like my doctor and appreciate his expertise, I know he doesn't know everything because I have a rare disease and an even rarer auto-antibody. I also really like studying and since that doesn't take muscle strength - I think you can relate to that Toni - it was a good fit for me.

Thanks for giving us a place to share. Judy

Internet has been an

Internet has been an important research tool, however, there are topics that are sometimes difficult to trust with the internet. For example, searching for a surgeon or doctor, it would be easy to publish and spread information in the internet. It would still beneficial if you go and visit these surgeon and ask referrals from people you know than solely trust your health on the information the internet provided.

Hi Kat

I agree that it's not a good idea to chose doctors or surgeons from the Internet. Not a good idea at all. And, I agree that it's best to get referrals from people you know in person. Thanks for pointing that out. Warmest wishes, Toni

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Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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