One of the things that embattles all CDPs is the temptation to spend hours all over the internet reading every single story that populates page after page of the infamous Google search. After all – we’re to be educated, right? And there’s soooooo much information out there…. so we should read everything we can!
Well… “yes” and “NO!!”
While one of the best things we can do is to become educated about our chronic illness, we must be sure that we are going to reliable sources for information. Reading every middle-aged Mom’s story about how her grandmother’s potion eliminated all her arthritis symptoms is likely not synonymous with getting educated. In fact, it’s likely to mis-lead regarding treatments and surely to discourage us as we watch others find their miracle cure. We fall victim to the age-old cure question… “Why not ME???”
Becoming pseudo-educated on their illnesses is one of the worst things CDPs can do for their doctors. Being overly sensitive to any sign or symptom that anyone has ever reported for any illness anywhere just isn’t a good idea. “Hyperchondria” really is a term – and nowadays, so is “cyberchondria.”
Really, that’s a real term.
So what’s a person to do? Answer: Go to only trusted, reliable sources for information. And always remember that each patient is different, no matter the similarities. If you think something’s a concern, you should mention it to your doctor. Or write it in your health journal. Or both.
Here are 6 very reliable resources for most chronic illnesses:
- WebMD www.webmd.com
This site is, without a doubt, one of the most trusted sources for easy-to-understand, reliable descriptions of most illnesses, signs and symptoms, treatments, etc. If you’ve never visited WebMD, you owe it to yourself to check it out.
- Rheumatoid Arthritis: www.arthritis.org
The arthritis site is a very comprehensive one and includes descriptions about many different forms of arthritis. I’d love to see Rheumatoid Arthritis on its own arthritis site (like this one) since it’s really an auto-immune disorder and not arthritis (as is typically thought of with the word), but a great site, nonetheless. The list of different kinds of arthritis is very user-friendly and easy to understand.
- Pituitary/Adrenal Info – Vanderbilt Medical Center/ Tennessee
I’ve been a patient at Vanderbilt for almost two years now, and I find their site very easy to navigate, full of helpful information, and pertinent to questions about my particular diagnoses. On the main pituitary page, you will see an option to click “Pituitary Disorders.” This library is a very good, reliable resource upon which to understand pituitary disorders and how they are treated. I found this site very helpful when ruling out pituitary disorders, brain tumor, etc.
- The American Cancer Society www.cancer.org
A very extensive information site for cancers of all kinds. Worded in a soft way that helps the patient feel part of a community of people sharing a common journey. One must be careful to absorb this site a little at the time, as the information is so extensive. Also guard against making the mistake that symptoms in one kind of cancer apply to all kinds of cancer, when that may or may not be the case. Making this assumption could color your report to your doctor in an inaccurate way, so keep in mind that each patient is different, though similarities definitely exist.
- Dysautonomia Dysautonomiainternational.org
A well-written site with lots of great information about the little-known disorder dysautonomia. Great visuals accompany detailed but easy-to-understand descriptions of this illness. You will find use-able information, so spend some time reading through the pages here.
- Heart – bradycardia/pacemaker www.heart.org
The American Heart Association has a site chock-full of helpful information, tidbits and other resources for heart patients of all kinds. If you go to the top right-hand search bar, you can type in words like “bradycardia” or “pacemaker” and find really helpful descriptions of heart-related health issues. Typically, patients will have high BP when their pulses are low and finding information on low heart rates with low blood pressure if sometimes elusive to the CDP, so keep this in mind when reading through this site – or any other one, for that matter. But the Heart Association’s site is wonderfully crafted for patients to have an easy time finding the information they’re looking for.
I’ve used these sites on numerous occasions – they are my go-to places for illnesses in my own chart. Remember, though, to keep a balance between what the research shows and what is or is not particular to your specific experience. There is no textbook anything, really, especially regarding auto-immune disorders. Listen to your body, listen to your doctor, and be choosy with where you do your research.
Rock on, Rheumies!