When you’re diagnosed with a chronic illness especially one that is very serious and affects many aspects of your life, you might feel overwhelmed by the amount and variety of information available to you. The moment you leave the doctor’s office, your head might start spinning with what he or she told you and the further questions you have. By the time you get home, confusion, muddy and murky, might set in, so you start making phone calls, looking at books, and, of course, consulting the Internet. There, oh, my! Far from clarity, you might find even deeper, unfathomable waters!
Sifting through all the information available through these and other venues can be more than a full-time job. And if you are troubled, sad, or otherwise negatively impacted emotionally by the diagnosis (which is completely natural), along with your quest for understanding might be more than a dollop of frantic hope that somewhere, somehow, you’ll be able to get a quick cure and all will be well again.
“Back in the day,” salespeople traveled around the country selling elixers, potions and lotions and other alleged balms, most of which did not work and many of which did harm instead of good. Today, you might not have someone knocking at your door, but there are plenty of ill-advised avenues on the ‘Web and elsewhere. Some things never change!
Beyond the hype and above all the noise of conflicting information, here are some things I’ve found helpful:
o Your primary doctor is your primary source of treatment and information. He or she knows your health history best and is in the best position to guide you. Trust your doctor as your primary source for guidance and, certainly treatment or, if your medical condition is best treated by a specialist, work with that doctor, too, and facilitate communication between him or her and your primary doc.
o Write down all of your questions and take them into your doctor. Schedule an “information” appointment, if need be, and bring a tape recorder or a friend so that you can revisit what your doc says. Ask your doctor what he or she thinks is the most credible source of additional information (a patient advocacy group, for example, or a book)
o When you tell your physician about any medications you are taking, include everything, including any dietary supplements or over-the-counter medication. This is crucial to your doctor’s ability to effectively evaluate and treat your condition.
o Understand that there is still much that medical science hasn’t figured out, and sometimes, your doctor might tell you he or she doesn’t know how long your symptoms will last or why they came up in the first place. Continue to touch base with your doctor about anything new that has developed in the realm of treatments and/or other considerations regarding your illness – for many diseases, research has only just begun!
o Be honest about how you contribute to your overall health. If exercise, diet, weight management, and other considerations figure into effective treatment or maintenance living with your illness, you are the person who has to take responsibility for following the guidelines and instructions given to you by your doctor, physical therapist, or other medical professional.