“Diagnosed, An Insider’s Guide for Your Healthcare Journey” by Cris Ross, chief information officer at Mayo Clinic, and Ed Marx, former chief information officer of Cleveland Clinic and now CEO of Marx Advisory, provides information on how to navigate a diagnosis from start to finish. The authors share insight into navigating the healthcare system based on their experiences of being executives in two of the best hospitals in the United States, as well as being patients — Ross, twice treated for stage 3 colorectal cancer, and Marx, survivor of a heart attack and treated for prostate cancer. In the following excerpt, the authors provide tips on how to prepare oneself mentally for a medical journey. While the physical side of a diagnosis may be the focus of medical professionals, they offer practical steps for dealing with the emotions and disorientation that come with a serious health journey.
All health journeys begin with you. Receiving a significant health diagnosis can be upsetting, shocking, life-changing. And after being diagnosed comes a time to confront real but unpleasant truths, to prepare yourself for the journey, to respond to difficulties and fears, and to relate to the people around you.
Your diagnosis may not be the result of any choices you made. You certainly would not choose to receive such a significant diagnosis. All you can choose is how to respond to this development in your life. Now is the time to have a discussion with yourself and decide what you want to do.
Some people try to control their health journeys; some feel better “trusting the process.” Some people adopt realistic stoicism; some choose denial. In our journeys, we adopted a mix of styles. Sometimes we wanted very much to be in control; at other times we placed our trust in experts and in our family and friends to decide what should come next.
No matter what, you can’t escape your role in your healing and wellness. You must participate in your journey. Regardless of how you want to engage in — or disengage from — your own health story, and regardless of the eventual outcome of the journey, we believe four things are essential for a positive healthcare experience:
- You need to know that the journey begins with you.
- You need to build resilience.
- You need to gain awareness.
- You need to put the pieces together.
Know That the Journey Begins with You
Whether you take an active role in managing your journey or take a more passive role in responding to events as they arise, self-acknowledgment is essential. Everything else—how you engage with your care team, how you build your community, and who you are at this moment—will depend on how you want to identify with your journey.
For the two of us, at least, it took some time to fully absorb that our diagnoses were real, to acknowledge that they were happening to us and not someone else, and to realize that we had to participate fully and actively in decisions about our care. Only when you have really owned up to your condition will you be in a good place to communicate with your care team and discern who is in your village and how to engage with them. But you come first. Just you.
Documenting Your Journey
In this and subsequent chapters, we are going to suggest that you write things down as you take action to be at the center of your healthcare journey. This can be in a notebook, in an electronic document, using an online tool like CaringBridge (www.CaringBridge.org)—whatever works for you. Separately, you might also want to keep a journal to record your emotional experiences. We found that journaling helped us with the emotions and disorientation that come with a serious health journey. But, separate from a journal, the notebook/guide was very helpful; in fact, looking back, we wish we had done more with this tool, and that is reflected in our recommendations. Because of that, we are recommending a strong “take action” approach, but no one should feel they need to do everything we recommend. Do what is right for you.
Tip: Even if you’re not into formal journaling, read through the four journaling steps outlined below—they will get you thinking about the important issues that you will face going forward and how to handle them. Then, if you want a quicker but still reliable record of your medical and emotional processes, take a look at the multiple checklists in Chapter 7. They help you set up everything from a record of your doctors’ names and contact information to a wish list of your plans post-recovery.
Start Your Record of Your Journey
Step 1: Write what you understand your health situation to be, acknowledging that you are at the center of it. This description doesn’t have to be complex or precise; just explain it in your own terms. Something happens when you put pen to paper or type words onto a screen. It is not enough to keep these thoughts in your head. The process of writing forces you to think and rethink your thoughts until they become increasingly clear. A clear written description might also help you communicate with clarity to members of your village and your care team.
Step 2: Write down your fears. Inventory them and perhaps rank them. Be honest. You have nothing to lose. This can be a private document or something shared with others. Don’t worry about the potential judgments of others—that is their issue. If there is ever a time to be self-reflective and transparent in life, it is now.
Step 3: Write down your intentions for your journey, drawing on the sense of honesty that comes from doing steps 1 and 2. What do you expect to happen? When the going gets really tough, what intentions do you want to hold on to? There are some health journeys without a happy ending: diseases that are terminal or conditions that cause permanent impairment. You might want to express a sense of hope against even the hardest odds or describe your understanding of the limits you want to put on your treatments. But everyone, regardless of the length of their journeys or the likelihood of a particular outcome, deserves to have a journey in which they hold on to their integrity, their identity, and their humanity.
Think of your best self—the person you are on your best day, with the greatest sense of strength and clarity—and write what this best-self version of yourself would be during this health journey. By best self, we don’t mean a miraculously flawless being; we mean a version of you that you’d be proud of even through the toughest journey. If it works for you and is important to you, don’t be afraid to also write what you hope and dream and strive and pray for—the best outcome that you think is achievable. But the real goal is to write your intentions for yourself regardless of the odds, regardless of how hard things get, regardless of what other people think. What is the best self that you want to be? For Ed, his best self was to focus on resiliency. For Cris, his best self was to be as human as he could be under dehumanizing conditions.
Regardless of whether you approach your health journey as a fighter, an observer, or a participant, framing and documenting your intentions is critical. We have no judgment about which stance is best during a health journey. But we do believe that being an object without intention is a terrible way to endure a health journey.
Step 4: Write what you need to do, and what you need from others, to live the best-self version of your health journey. Again, be honest and do not worry who might read what you write. You need to lay everything on the table. Baring your soul is part of a more healthful journey.
Support Cancer Care and Research at Mayo Clinic
Join Ed Marx and Cris Ross, authors of Diagnosed: An Insider’s Guide for Your Healthcare Journey, in supporting the nonprofit mission of Mayo Clinic Comprehensive Cancer Center. With your support, Mayo Clinic is able to provide unparalleled expertise in patient care and innovative research to meet the needs of our patients.
100% of author royalties from the sale of this book benefit important medical research at Mayo Clinic Comprehensive Cancer Center.
