Becoming a Practiced Patient-A guide to living well with chronic disease
by Diana Price 7/2020
You may feel better prepared for the challenge if you’re educated about your diagnosis and treatment options and take an active role in making decisions about your care. In doing so you become what’s known as an empowered or practiced patient; this means that you learn about your diagnosis, ask important questions, and work with your healthcare team to choose the treatment that’s best for you. After all, you’re an individual, and your healthcare should suit your unique needs. With patient empowerment you have the ability to make sure that it does.
Marie Barry of Menlo Park, California, has put patient empowerment to work as she’s managed three chronic diseases: rheumatoid arthritis (RA), lupus, and Sjögren’s syndrome. Because there is no cure for any of these autoimmune diseases, Marie’s best chance of living a full and active life has been to effectively manage her symptoms. She credits her success to becoming a practiced patient, which she’s learned to do since diagnosis more than a decade ago.
From Overwhelmed to in Control
The road to empowerment has been a steady process for Marie, an industry consultant in biotechnology and pharmaceuticals. She admits that at the time of diagnosis she was anything but a practiced patient. “I was out of control, seriously, at the beginning,” she says. “I went from being well and fast and mobile and very on top of everything in my life to sometimes needing help getting out of bed in the morning, getting dressed, and driving long distances,” she explains.
Initially, Marie says that managing RA, lupus, and Sjögren’s was “overwhelming,” as she struggled to cope with symptoms and manage medical appointments, medications, and side effects. “The first two years were awful,” she says, and she describes living with chronic disease—or, in her case, three chronic diseases—as “a big management issue.”
For example, Marie has taken as many as 12 drugs per day, which is an organizational as well as a side-effect-management challenge: “I was dealing not only with the diseases but with the side effects of the drugs as well,” she explains. Furthermore, she says that when it comes to changing drugs and dosages and managing side effects, “There’s a lot of trial and error.”
Rather than allow the logistics of living with chronic disease continue to overwhelm her, Marie began to get organized—a process by which she’s become a practiced patient. She began keeping Excel spreadsheets to manage all of the data associated with her health. “That gave me comfort,” she says, “because I could put everything down on paper and try to figure out patterns and what to report to my doctor.” Marie also started a diary in which she described her good and bad days, unusual occurrences, and reactions to medications.
Marie says that these tools were her “first baby-step in self-management” and that putting information on paper—such as types of medication, dosage, and how she was feeling—helped her start making sense of how to manage her diseases; she then began to feel that she had some control. “One of the biggest realizations when you’re newly diagnosed is trying not to feel like a person caught in the whitewater,” she says of the importance of taking an active role in your own healthcare.
The information Marie recorded was also useful when she discussed treatment with her doctors, as her records helped them determine what was working, what wasn’t, and how to avoid severe side effects. As well, by tracking trends in her health, Marie could make personal choices to help manage her health, such as avoiding behaviors that caused pain and fatigue.
From the sense of control that Marie gained with her spreadsheets and diary, she took another step in empowerment when she realized that she could approach her medical appointments like business meetings. “I had been a businesswoman my entire career,” she explains, “and why not treat my doctors’ appointments as I would an important business meeting?” Marie says that with this realization, she began entering each appointment thinking, I know what I’m doing here.
Marie’s businesslike approach included creating a list of five topics to discuss at her doctors’ visits. She ranked these in order of importance, beginning with most important to ensure that her biggest concerns were addressed within the allotted time. She also sought out trustworthy sources of information about her diagnoses to gain a better understanding of the diseases and the available treatments. “I read everything I could about RA, then lupus, then Sjögren’s,” she says.
Marie says that in addition to helping her feel more in control, her businesslike approach made her a more effective manager of her healthcare. “I look at my role as quarterbacking for my care,” she says. This involves making sure that information is shared among all of her providers, as coordinating treatment—especially with multiple diagnoses—is an important part of healthcare management.
What You Need to Know to Become Empowered
According to Ellen Field, MD, a rheumatologist in private practice in Bethlehem, Pennsylvania, there are several key elements to empowerment for patients living with chronic disease. These involve asking the right questions of your doctor, learning about the drugs you currently take as well other medication options, making healthy lifestyle choices, and building a support network.
Asking the Right Questions
“Patients can make good choices only when they know and understand all the facts,” Dr. Field explains. And knowing what questions to ask your doctor is one of the best ways to gather those facts. Here are the types of questions that Dr. Field recommends that patients ask:
- How is my treatment plan expected to work?
- What are the risks of not treating my condition?
- What types of tests do I need before I begin treatment?
- And do I need tests to monitor my condition while I’m on treatment?
- How do I monitor my condition?
- What signs and symptoms might indicate that my condition is getting worse or that treatment isn’t working?
- Are there any other diseases or disorders (co-morbidities) for which I’m at risk in addition to my primary condition? If so, is there anything I can do to prevent them?
Understanding Your Medication
An important topic to discuss with your healthcare team is your medication. Dr. Field recommends that patients build an understanding of the following:
- How the drugs they are taking work
- How several drugs taken together might interact
- How the drugs are taken or administered—such as orally, self-injected, or intravenously
- Possible side effects or serious adverse events
Also, Dr. Field encourages patients to understand the drug benefits of their health insurance plan and know that their insurance company may prefer one drug to another. If that’s the case, she says that the carrier may allow the patient to start with the preferred drug with options only if the starting drug isn’t effective. “[Patients] need to understand their benefits and realize the doctor has little control if the carrier has identified the options that will be covered,” Dr. Field explains.
Making Healthy Lifestyle Choices
In addition to drug therapies, Dr. Field says that for people with chronic disease, healthy living can help “keep the patient’s overall health status as good as possible” and in some cases lessen the potential for side effects. “If the patient maintains good health practices,” she says, “their immune status may be better able to deal with adverse events.” Specific examples of healthy lifestyle choices and their benefits include exercise for improved muscle mass and strength and adequate sleep to help support the immune system’s ability to fight infections and the body’s ability to control the symptoms of chronic disease.
In addition to medical care, you may find that looking to other sources of support helps you manage your condition. In-person support groups for people living with similar health challenges as well as national organizations can assist you in several important areas. “Knowing the local and national support systems empowers patients with more knowledge,” Dr. Field says, and these resources also keep patients updated on such topics as treatment options and side-effect management. “Knowledge itself is empowering,” she explains, as is having a community of people who understand what you’re going through.
You may be able to find in-person groups at a local hospital, and national organizations dedicated to specific diseases and disorders (which are widely available online) can provide information and education and may also connect you with local support.
You Have What It Takes
If you have been diagnosed with a chronic condition and feel, as Marie did, that your life and health are suddenly out of control, know that you have the resources—personal and external—to become empowered in your own care. Just as Marie looked to her experience as a businesswoman, consider your own strengths and expertise and the steps that Dr. Field recommends as you manage chronic disease. And recognize the resources around you: healthcare professionals, print and online information, and people who are facing similar health challenges—all can help you take action to become a practiced patient.