Who would not be overwhelmed after hearing those words?
Facing a diagnosis of a serious illness like cancer overwhelms the best of us. Even the strongest, bravest, most intelligent, most steady person in the world has trouble hearing those words. It is not only facing one’s mortality that is daunting, but also confronting and dealing with all the numerous decisions and complicated scenarios that result from this diagnosis.
- Making the right decisions about health choices is a complex task. Finding the right doctor, right treatment, deciding whether to get a second opinion or enter a clinical trial are just some of the first line decisions.
- Then, how to talk to your spouse, your family, your co-workers, your friends and what to do about your future plans enter into the equation.
These are all issues that patient advocacy deals with, every day, all day long. Patient advocates are here to help. With websites, live chats, phone lines, Facebook groups and numerous other forms of media, these groups help patients in need.
Patients learn from patients on how to cope with the diagnosis of a serious illness. Patients empower other patients by showing them the way and telling the story of how they coped. No one wants to face this alone. And no one has to.
Empowerment means taking control of your health and doing the best you can do to educate yourself so that you feel more confident that you are getting the best, most personalized treatment that you deserve. It means finding out all you can about your specific condition and then searching for the best doctor you can find to treat you. This may mean traveling to a major cancer center to get a second opinion. You do not necessarily have to give up getting treated locally, but you should definitely get a second opinion and have an expert available to oversee the treatment and especially to inform you of any clinical trials available for your specific condition. Once you start a treatment regimen, you may no longer qualify for a clinical trial, so it is best to research this early.
At Patient Empowerment Network, we empower patients to gain the confidence to self-advocate. Videos and patient stories of patients at town meetings who have been through what you are going through, can show the way. Interviews with industry leaders, healthcare providers and patient advocates can provide information about clinical trial navigation and participation, support groups, live events and other ways of patient empowerment. Our Patient Café™ sessions can help show you and others like you how to gain knowledge about and cope with their illness. The important thing to remember is that you are NOT alone and that you CAN learn to be your own advocate and get the best, personalized treatment that you deserve. There is a wealth of knowledge out there. Do not be afraid to start on your search. But empower yourself first and make a plan – learn from our empowered patients and gain strength from their experience.
Patient Empowerment Network is a 501(c)(3) non-profit organization dedicated to empowering patients worldwide through education, support and the help of other patients. We want to encourage patients to reach out and gain the knowledge and confidence to advocate for themselves. We deal mainly with blood cancers (chronic lymphocytic leukemia, non-Hodgkin lymphoma, multiple myeloma) and melanoma, lung, and prostate cancer, however we do wish for every patient worldwide to become empowered!
Joan Justice is the Executive Director of the Patient Empowerment Network. She has a nursing degree and a masters in business and has worked as a nurse both in Europe and the US. She spent 12 years in international marketing for several medical device companies before switching to the non-profit world.