How to Learn More About Your Chronic Illness

Being diagnosed with a chronic illness leaves you with many questions. Chronic illnesses don’t simply go away with a 10-day course of medicine. Instead they stay with you for a long time. Medicines can improve your symptoms, but there are typically no cures. One of the most important steps in dealing with a chronic illness is to learn everything you can. There is a lot of medical information out there, and it can be challenging to sift through the good and the bad. Here are some general tips to help you learn more about the medical side of chronic illness.

Instructions

Difficulty: Moderately Easy

1. Start in your doctor’s office. Listen to what your doctor has to say, and then ask whatever questions come to mind. Don’t shy away from asking more questions if it helps you understand your disease.
2. Ask your doctors or nurses for any written materials they have related to your condition. These materials typically consist of general information like symptoms, available treatments and possible complications from the disease itself or from the medicines used to treat the disease.
3. Check the websites of nationally recognized or government-based clinics, like the National Institutes of Health and Mayo Clinic, for more information. Search for medical research and clinical trials on the PubMed or ClinicalTrials sites.
4. Find out if there are any national or international organizations dedicated to serving people affected by your condition. Type the name of your disease in your search engine and sort through the associations listed. Check for organizations with a 501(c)3 non-profit status and a reputable medical advisory board (usually listed on the website). Often, these websites host online message boards for people to connect with other people who have the same diagnosis. Read through the messages and contact the organization for brochures and booklets.
5. Keep notes of how you feel each day, and ask for copies of your medical tests and records. Your own records help develop a more complete picture of your disease and how it affects you personally. If you have an especially troublesome side effect or concern, call your doctor’s office to discuss what, if anything, you should do.

Tips & Warnings

• It helps to have someone else with you at your doctor’s appointments. It’s hard to digest all of the information that a doctor tells you in a single visit, and someone else might pick up on something that you don’t remember.
• Be wary of any website claiming to know how to cure a disease. Stick with the old adage “too good to be true” when reading through these claims.