How can I find trustworthy information about my condition?

When you are diagnosed with chronic illness, it seems like everyone knows someone who knows someone who has your condition. Nearly everyone around becomes an instant medical expert. They will tell you stories about people who died miserable deaths from your condition. They will tell you stories about people who have cured themselves by (pick one or add your own) going organic, eating only raw foods, taking supplements, buying and using any of the many snake oil products out there that are little more than glorified juice in expensive bottles, exercising, resting, getting more sun, getting less sun, finding a guru or a faith healer, magnets, and on and on. And then, of course, there is the Internet! You can find "cures" for virtually any disease on the Internet. The problem is they don't work. Let's be honest. No one wants to be on medication for life. No one wants to hear that their disease is here for the duration. No one wants constant medical interventions. It's easy to grasp at straws when you hear about a "miracle cure." The prevalent conspiracy theory that doctors don't want you to know simple things that will cure you fuels the desire to try "miracle cures." The only thing that gets cured is the emptiness of the pockets of the people who sell most of this stuff.

When confronted with cures that seem too good to be true, remember, they probably are. Consider the source of the information. If you are hearing about this third-hand from the checkout clerk in the grocery store whose second cousin's step-sister twice-removed cured shingles by eating marigolds, you might want to think twice. Infomercials are designed to sell you things, not necessarily give you good, solid information. Advertisements on the Internet are just that—advertisements designed to get you to buy products. So, if you can't trust your friends and family, and you can't trust the television or radio, and you can't trust the Internet, where CAN you get reliable information?

The first place to go for information is your doctor. Although the doctor can't spend hours explaining every nuance of your disease, the doctor can give you an overview, answer you most pressing questions, and point you in the direction of reliable information. Always respect the doctor's time, but also be a persistent patient. One patient on the occasion of her visit to the doctor shortly after her release from the hospital had about three questions that were very significant. Will this kill me? Is it progressive? Is my functional life over? The doctor left the room before answering the second question. The patient, a pretty tenacious lady, found him in the hallway, put her hand in his lab coat pocket to stop him from escaping and said, "Wait a minute. I'm not finished with you!" Although we certainly can't recommend that kind of behavior, the patient did get her questions answered. You can bring your most pressing questions to your appointment. You can even fax them to the doctor a few days in advance of your appointment. If the doctor seems rushed and in a hurry to get to other patients, ask for an appointment where you can have 15 minutes of undivided time to ask your questions and have them answered.

A reliable source of information is the disease foundation that is specific to what you have. You can call and ask that information be sent to you. Virtually every disease foundation has a presence on the Internet. They almost always end with dot org (.org). The United States government's National Institutes of Health is an umbrella for many specialized disease departments. Web sites that end in dot gov (.gov) are reliable. Institutions of higher learning that also conduct medical research and education will have sites ending in dot edu (.edu). Again, these sites can be trusted. If you have questions about what you have read, ask your doctor. Open and trusting communication between doctor and patient is one of the most effective tools for educating yourself and managing your chronic illness. You will find a list of resources in the appendix.

Open and trusting communication between doctor and patient is one of the most effective tools for educating yourself and managing your chronic illness.

 
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