Being diagnosed with a serious illness is a frightening experience. It is important that you research and educate yourself about your disease and learn to communicate with your medical team. An informed patient gets better results. Here’s how:
The Internet has made research widely available, but it can be a double-edged sword. Consult only credible websites to educate yourself. Check who operates the site, who funds the site, where they get their information and how current it is. Do not initially overwhelm yourself with information, and please don’t begin your search by typing “cancer” into a search engine!
While on-line, disease-specific discussion groups can be a valuable source of support and knowledge, but be cautious when reading information posted there and make sure to verify it with other sources. Our “Evaluate Health Information on the Internet” roadmap will give you more detailed guidance.
After you’ve done this research to educate yourself and to learn the language of your illness, you should explore the resources available on patient education sites specific to your illness.
Not all groups are created equal, however. It’s usually best to start with the larger, national groups. You can quickly find whether your disease has a national advocacy or educational organization to support it by typing “National Association for (name of disease)” into a good search engine. There are smaller or very specific advocacy groups as well, but be mindful of their limited scope, mission and access to resources.
Now that you have learned about your illness and feel prepared with the right questions and vocabulary, make the most of your medical appointment and discussions.
You are not trying to out-do the doctor here, or to presume that your recent personal research trumps his or her years of education, training and medical practice. However, it shows that you have worked hard and intend to be your own best advocate.
Remember that you, as a health care consumer, will receive the best care if you are an informed, active participant in your medical treatment. The days when “The doctor knows best” were enough to manage your care are behind us. It may take a few visits with your doctor to develop a strong partnership. Be courteous but make sure that your needs are met. If the relationship is not working, look for another doctor.
For good tips on finding a doctor, check our “Choosing a Primary Care Doctor” roadmap.
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