Usually the process of accepting a diagnosis begins with denial: How can I be certain I have this?, Does the doctor know what he's doing? What do I do next? Who do I see for a second opinion? (No longer an option, but mandatory). How do I choose wisely? What if I don't? How long will I live? Will I always have this disease? How will my life change?
Once you've gone through denial and accept your disease and are seeking support, you'll find you are ready to research, compile, learn, and ACT. We'll show you how to answer " I have what?" with some pretty slick research.
Who and/or What Which doctor? Is the hospital as important as the doctor? What diagnostic, medical or surgical procedure is next? Is this flexible?
Where Do I see an out of town specialist, or is there well-trained expert care close by?
When If your disease is aggressive, sooner, not later, is mandatory. If it is not as aggressive, it's still sooner rather than later. Patients have a tendency to feel they should be doing something, even if told "Wait and see?" and their instincts are usually on target.
How did this happen?
Who, What, Why, Where, When and How
If you've asked yourself "why me", then "why not me" is a question you should consider. "Why not me?" will guide you towards accepting your illness, and reveal the way for you to go forward with energy and determination.
Why me? Why not me?
The medical paradigm is moving towards 'joint decisions' (clinician and patient) which requires more than even basic health literacy. The clinician's role in medicine is evidence-based through scientific findings, but patient preferences, priorities and risk factors is the other half of the equation that the patient brings to the table.
Most physicians still adhere to the medical paradigm of presenting evidence, even as patients are taking more of the weight of decision-making by telling their physicians what treatment they feel they want, rather than the doctor telling them what treatment he feels the patient should have. The patient is equipped through research on the Internet, social media, medically-related sites, and support groups (virtual or live). The doctor is equipped through his scientific education and experience. How much can a physician do in a 15 minute office visit? And, for example, some doctors still feel that the more a patient knows, the less they'll accept the physician's advice for a perceived risky intervention. Aren't they making a premature judgement call about the patient's opinion.
In summary, the paradigm is shifting from a directive to a collaborative model. 1
1 American Academy of Family Physicians, 2010.
Each patient will create a blueprint for getting the correct diagnosis, treatment alternatives, and coping with his disease/illness through the processes of due diligence (research) and clear communication which leads to informed decisions.
Since our inception, we have focused on ways to give patients the tools to build their health literacy skills. Patients learn how to research, communicate with the medical establishment, organize their medical journey and how to navigate the healthcare system. We work with all levels of patients, whether newly diagnosed, an old pro, those overwhelmed with their situation, or those without a close support team.
* "Plain language is clear writing designed to ensure the reader understands as quickly and completely as possible. Plain language strives to be easy to read, understand, and use". ~ Wikipedia.
Executive Director of The Patients' Project, Suzi Garber, is a survivor ofseveral rare, and not so rare diseases including two cancers and heart disease, and has learned and earned the way to open relevant dialogue with her doctors. "I have what?" loosely translated, can be, "I don't understand what you've just said. I can't wrap my head around it. Please explain this in plain language.* If you are unfamiliar with my diagnosis, please say so. I will research specialists." (Your primary care physician will probably suggest this anyway, if he is the first to tell you).
We serve a clientele consisting of caregivers, newly diagnosed patients, those who are chronically ill, those who need additional support navigating our health care system, or those who need an advocate.
. . . I have what ?
One of the most frequent patient reactions to hearing a diagnosis, whether expected, or unexpected is