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Dealing with a Devastating Medical Diagnosis

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Dealing with a Devastating Medical Diagnosis

What would you do if you were diagnosed with a life-threatening illness? How would you handle this news? While shock, fear, and even hysteria might be normal reactions, it's helpful to have a guide for what's often a very tumultuous road ahead.

When you're given the news that you have cancer, HIV, or another serious diagnosis, it may feel as if your world has shattered and all of your plans for the future have vanished in a flash. You feel fear, despair, anger, sadness -- often all at once. It's understandable; a serious diagnosis is a crisis, and you should treat it as one. Don't force yourself to go to work or make big decisions while you're really upset. Give yourself time to pull it together: Spend time with loved ones; don't forget to eat; nap if you can; cry if you feel like it. There are no rewards for being tough. It's a tribute to human resilience that as you learn more and adjust to the shock, you'll find you regain some focus and are able to take the important next steps.

Finding a good doctor is really important -- begin by looking for a specialist who has extensive experience treating the exact disease you have. Finding that person can be a puzzle. There are many referral sources, and none of them will tell you everything you need to know. The tried and true way is to ask a physician you know and like to refer you to another physician that he or she has worked with before.

Guides such as "America's Top Doctors" and New York magazine's best doctors list are good sources as well. Also keep in mind that different people have different preferences: Some want doctors who are all business, or who do research, or who are really warm and personable. Once you find a doctor who has the technical competence, schedule to meet with him or her and use your own judgment -- can you trust this person to work with you and do his or her best for you?

It is also important to get a second and sometimes even a third opinion. This can be tough; after a serious diagnosis, it's common to feel a sense of urgency to get started on treatment immediately. This is not wise. Get at least one additional opinion before you proceed.

The Internet can be a blessing or a curse. For example, if you Google pancreatic cancer, you'll get almost 7 million hits. That's a lot to sort through! Many people find basic information about their diagnosis online and then quickly got overwhelmed. Other people can't tear themselves away from the computer -- they keep searching for that one piece of information that will save their lives. Most people find sites like WebMD to be good for getting a basic understanding of their disease, and then as they start talking with their doctor about their unique circumstances, they are able to be more focused in their search for information.

Often, friends, family members, and co-workers don't know how to respond. They should begin by acknowledging the difficult situation. People say they're uncomfortable raising the topic with someone who is sick and that they don't want to remind the sick person of it or make them cry, but saying nothing is far more damaging. Say this: "I hear you've had some bad news. I'm so very sorry. I hope everything goes OK." It means so much.

Also, don't talk about a friend or family member's illness without his or her permission, even to other family members. Ask what information can be shared and with whom. And then listen -- many people with a serious illness swing between hope and fear.

When it comes to health care, you have to force yourself to act like a consumer. Things have changed a lot in health care in the past decade. Advances in surgery and drugs and diagnostics mean it's now possible to live long and well with diseases that were a death sentence as recently as 10 years ago. But we will only benefit from these advances if we are involved. We have to decide which doctors to visit, get the tests, take the pills, and seek help when we can't manage on our own. Patients have a critical role in the success of our health care.

Online Medical Resources
WebMD
webmd.com
A great place to begin research.

The National Institutes of Health's MedlinePlus
nlm.nih.gov/medlineplus
Features a guide to "healthy" Web surfing.

Information Therapy for Consumers
ixcenter.org
Has general advice about finding evidence-based medical information on the Internet.

The Medical Library Association
mlanet.org
Offers advice on evaluating health websites, and recommends the top-10 websites for cancer, diabetes, and heart disease information.

CAPHIS
caphis.mlanet.org
Maintains a regularly updated Top-100 list of the best health websites.

The National Cancer Institute
cancer.gov
Features a fact sheet about evaluating health information on the Internet, which offers tips for determining whether a website is potentially biased, unreliable, or out of date.

Health Compass
healthcompass.com
A site from the American Federation for Aging Research and the Merck Institute of Aging and Health that aims to help older health consumers navigate the Internet for information.

Forbes
forbes.com
Features best-of-the-web lists for top health pages based on accuracy, timeliness, and usefulness of content.

Consumer Reports
healthratings.org
Also features best-of-the-web lists for top health pages, based on accuracy, timeliness, and usefulness.

The Health on the Net Foundation
hon.ch/HONcode
Created a code of conduct (HONcode) that spells out rules for maintaining reliable and credible health-information websites. Sites that abide by these rules can receive a HONcode seal of approval.

Special Thanks
Special thanks to Dr. Jessie Gruman, founder and president of the Center for the Advancement of Health, for sharing this information. Special thanks to Walker & Company for giving copies of Dr. Gruman's book, "Aftershock: What to Do When the Doctor Gives You -- or Someone You Love -- a Devastating Diagnosis," to our studio audience. Special thanks to Castle Connolly Medical Ltd. for giving everyone in the audience a copy of the eighth edition of "America's Top Doctors."

From The Martha Stewart Show

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