A Review of ‘Taking Charge: Making Your Healthcare Appointments Work For you.’
When I was first diagnosed with multiple sclerosis everything was a mess. I was thinking about the implications for my future, dealing with physical symptoms that led me to the hospital, the meds coursing through my system. It was a lot, a lot all at once that didn’t allow me time to stop and consider the logistics of what was happening and how important managing my healthcare was about to become. At the time, I often wished someone with experience had sat me down, someone who had been through the process of diagnosis, was living the chronic illness life I was now facing, and said, “Look. Things are insane. This is what you need to know, this is what you need to start doing, so you can take a little control over everything that’s happening and move forward.” That person? That’s Ricky White.
White’s book, Taking Charge: Making your Healthcare Appointments Work for You, is, as the title suggests, a guide to managing your care – by creating a positive and effective doctor-patient relationship and managing the administrative realities of complex care for complex issues. Ricky’s patient story is one so many of us can relate to, even if the diagnosis itself is not. From years of misunderstood and ignored pain, to misdiagnosis, to life-changing revelation – the diagnosis of Ankylosing Spondylitis, a chronic inflammatory disease that is painful and debilitating. We all have our own version of this story, with varied details. What makes his perspective different, and his advice so useful, is the fact that before and during and after his diagnosis, White worked as a healthcare professional.
His experience on both sides of the patient/caretaker coin provides a unique insight into the ways we interact with our doctors, and how we can better manage the range of information we need to communicate and that is communicated to us, all within the limited amount of time we actually spend with our doctors. This is a perspective he’s taken and turned into a book, an invaluable resource for those starting the journey of chronic illness and those living it, who are wanting to take control over a world that often feels like it is happening to you, not with you. His story is shared with the tone of someone who has lived and learned from the struggles and frustrations experienced by both healthcare professional and patient hoping to share those intersecting insights with us, his readers and fellow ‘professional patients’
The book focuses in large part on our relationships with your doctors. He asks us to examine our own personal barriers to a positive relationship, tangible barriers like distance to an office that may cause lateness, to more personal barriers like honesty, anxiety, and attitudes about the doctors themselves. His call for introspection in this way may seem strange, but the process of evaluating your thoughts and actions can, and did for me, identify ways we can change our approach. He provides tips for better interactions, ways we can prepare beforehand in order to get the most out of our time with our doctors.
Particularly salient in this discussion of barriers is the importance of identifying the goal for our care. While reading the book I realized I had never truly thought through myself. There’s a general assumption that doctors are like mechanics for our body. We identify a problem so we go to the doctor in order for them to fix us. The goal there is to ‘fix it,’ i.e., make the cold go away. This is a completely different perspective than the reality of a chronic illness patient. You don’t go in looking for a cure; there isn’t one. The whole concept of a ‘goal for care’ shifts completely. You have to take the information provided by your doctors, think about your personal priorities and your day-to-day reality, and come up with a goal. What are you hoping to get out of your treatment? What are you hoping to maintain, adapt to, etc.? Having a grasp on your goal has a major impact on the way you and your doctor communicate about your care and how care is provided.
Some of the best tips in the book come from White’s advice on organization. He talks the importance of lists, taking notes, keeping copies of everything, and ways to prepare for an appointment. This issue is broken down into manageable points that make what seems impossible suddenly possible. You may not realize it, but this is some of the most important advice you’ll get as a chronically Ill patient. The amount of paperwork you’ll find yourself in charge of, questions about dates, tests you’ve received, etc., will make you wonder if you’re a patient or an administrative assistant. Following his advice, and using the resources he provides on his website, helps you create a system that, when maintained, will make appointments much more efficient for you and your doctor, and increase the quality of care you receive as a whole.
His experience provides some important perspective on the challenges and limitations our doctors and nurses face. Reminding us that, when dealing with many patients, multiple conditions, and levels of immediate need is a juggling act. While this is their profession, doing our part and preparing, stay on schedule, and having information from all our other doctors accessible, can allow for more time focusing on our goals for the appointment than managing and coordinating information.
He also discusses barriers that are focused on ways patients’ actions cause doctor and staff frustration, ranging from patients attitudes, suggestions on appropriate mannerisms and dress, and awareness of your physical gestures and actions during an appointment, as well as the importance of smiling at your doctor. These are good tips on self-presentation, on first impressions and how to come off positively in any interpersonal relationship, and how your presentation impacts how others see you. I’d say this is somewhat unneeded when discussing the doctor-patient relationship and, perhaps my US based lens skews my view here, glosses over some of the power dynamics created by our healthcare system itself.
In general, there are aspects of the book that focus on a system that is biased to the UK. Despite now living in the US, the majority of White’s diagnosis process and work experience comes from overseas. His discussion does have a bit of bias in that direction, and it is good to note that there are differences in the US that aren’t discussed here. I would not let this deter you from getting your hands on this book. Even the moments that feel less relevant to the US reader gave me quite a bit of food for thought. Moreover, his way of breaking down organization and preparation for appointments is one that could be and should be, transferable to managing health insurance, disability benefits, and the like. These are systems and involve a similar (if not more intense) juggling of paperwork, phone calls, deadlines etc. Using the resources he’s provided here to manage these, along with your health care appointments, will save you so much time, confusion, and anxiety.
All in all, this book is a great read for those who have just been diagnosed, those living in limbo land, and those who can’t quite get a handle on this life as a professional patient. It captures the ‘reality of the chronic illness patient’ in a way that we can all relate too, regardless of diagnosis. A great gift for a fellow spoonie or someone newly diagnosed. It’s a helping hand in the form of a book from someone who has been on both sides of this story and wants to use his knowledge to make the lives of others like him, easier to manage.
This is the first in what will be an ongoing series of reviews and recommendations of books, apps, tech, and other products that make life with a chronic illness a little easier. If you have any suggestions for future posts, please feel free to contact me.