Knowledge equals power: Research is key after being diagnosed

When you receive a difficult diagnosis, you may feel like you are alone in a sea of questions and frightening decisions.  As a health advocate, I believe each individual is his or her own best advocate.  But being the best advocate for yourself may mean handing over some of the responsibilities or decisions to someone else. Only you can determine whether or not you are too overwhelmed that you just can’t do it, and if that’s where you find yourself, the best thing you can do is ask someone else to take charge.

But before you get to that point, there are some things you can do to help prepare yourself to make good decisions.  I like to start by making sure I’m in the right frame of mind about the condition.  It’s natural to be frightened or angry, but those are not emotions that will help you solve the problem.  Your mind is a powerful tool that is capable of handling much more than you would expect.  So I try to start with the positive attitude that I will be able to learn about this condition and I will be able to make a good, informed decision when the time comes.

My next step is to learn everything I can about the condition. I believe knowledge equals power, and having power means being empowered to get the care you need and deserve.  There are many sources of information so it’s up to you to decide which one will work best for you.  Some people turn to books or other printed materials.  Others dive into the Internet to do research. A good place to start is a resource website like EmpowHER.  Medical facility websites like the Mayo Clinic website have a wealth of information on many topics. The U.S. National Institutes of Health website is a clearinghouse of information from all health fields that can help direct your search and point you to research and clinical trials for your condition. Depending on your diagnosis, you may find specific websites for your condition.  For example, the American Cancer Society is a great place to start for information about cancer and for connections to resources for more specific types of cancer.

As you research, be careful to consider whether your sources have up-to-date information and whether the medical information provided is written or edited by qualified healthcare professionals. That’s not to say you can’t gain useful insight from blogs or other sources written by people who have the condition.  But you need to keep straight which are “facts” from the medical community and which are “opinions” shared by someone in a similar situation to yours – a patient or family member of someone who has the disease.

Your doctor is another important resource, so make an appointment to pick his or her brain about the condition and what your options are.  Doing your own research before your appointment can help you be prepared to ask the right questions that will help make things clearer. Never stop with just one doctor.  I believe a second or third or even fourth opinion can only help you get more information and open up your options. And no matter what you decide to do, never stop looking for better or newer treatment options.

As a health advocate, I don’t believe in accepting a diagnosis.  For me, acceptance is nothing but a dead end.  Instead, I choose to manage all aspects of my condition – from my symptoms to my treatment to my attitude about it.   I also believe it’s important to listen to your “gut.”  I’ve heard from patients time and again that they wish they had followed their own intuition to get a better outcome.  In the end, you know your own body better than anyone else.

Being your own best advocate means choosing to be in control rather than letting the disease control you.  Keep a positive attitude, do your research, and believe in your own ability to make good decisions about your health and your healthcare.

Michelle King Robson (pronounced robe-son) is one of the nation's leading women's health and wellness advocates. She is the Founder, Chairperson and CEO of EmpowHER, one of the fastest-growing and largest social health companies dedicated exclusively to women's health and wellness.  In 2011 EmpowHER reached more than 60 million women onsite and through syndication expects to reach more than 250 million in 2012.