Patient Power: 3 Strategies to Improve
By Joy H. Selak, PhD
- Hire the Right Doctors, Fire the Wrong Ones
- Become a Prepared, Professional Patient
- Join a ‘Good Doctor Club’
more effective and supportive care,
As the author of You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, I’ve been fortunate to work closely with an outstanding physician, my co-author, Dr. Steven Overman. I’ve also had the opportunity to speak to many illness support groups about the challenges pain patients face in building an effective, supportive relationship like this with their physicians. I had been living in the illness world for many years before I found Dr. Overman, and have worked with many other treating physicians in other cities before and since. I’ve had both good and bad experiences in building these relationships, but over the years, I’ve enjoyed a consistently rising trajectory toward accessing more effective and supportive care, more quickly. I hope that by sharing just a few of my adopted strategies, I can offer patients a head start on their own journey.
Hire the Right Doctor: There are many reasons an otherwise competent doctor may be the wrong one for you. For example, if you’ve not yet been diagnosed and don’t have a name for your condition, you need a physician that works in that foggy landscape, one who enjoys unraveling the mystery, as opposed to a specialist who my try to fit your symptoms into his or her bucket of expertise. This open mindedness would most likely come from a specialist in internal medicine, a doctor trained to assess and refer, rather than the ob-gyn, general practitioner or allergist you may already know. I did not know such a specialty existed and spent years suffering increasingly severe facial pain, saw many doctors and dentists and endured multiple unnecessary procedures before a friend told me how valuable her internist had been in helping find answers regarding her difficult condition. I made an appointment and described what was going on to this curious man. He listened carefully and said, “I think you might have trigeminal neuralgia.” He then picked up the phone, called his favorite neurologist and asked what she prescribed for TN. He gave me a two-week prescription and said, “If this works, go see her. If it doesn’t, I’m wrong, so come back. We’ll keep looking.” He was not wrong. This internist is now my primary care physician and continues to help me solve my medical mysteries.
improve these relationships and outcomes by matching your doctors’ professionalism
with your own.
Fire the Wrong Doctors: If you do have a confirmed diagnosis, it still does not mean any doctor working in the related specialty is the right one for you. For example, I was once referred to a urologist who confirmed I had the bladder disease interstitial cystitis and offered a treatment option. But, as time went on, I was having side effects and making scant improvement. I did not feel he was knowledgeable or supportive about my condition. Then one day while waiting to see him, I looked around his reception room and noticed it was filled with elderly men. Thinking about it, I realized I was practically the only female visiting the practice. A high percentage of IC patients are women, so while this man was a urologist, he obviously wasn’t experienced in treating IC. I began asking physicians, nurses, staff and other patients, “Who actually treats IC around here?” I found my way to two female urologists at a university hospital who were researching and writing in the field. I received excellent, supportive care and quickly began to see real improvement.
Become a Prepared, Professional Patient: Once you have hired the right doctors, and fired the wrong ones, you can further improve these relationships and outcomes by matching your doctors’ professionalism with your own. One strategy is to be fully prepared for meetings. I have a one-page, updatable form in my files that I use for every meeting with every provider. It includes a list of all my diagnoses and when they were given. It lists all current medications and doses. Then it describes any changes in symptoms or interventions since my last visit. Finally, I allow myself three questions that are appropriate to the length of the meeting. I take two copies with me, one for my own reference, and one for the files. Typically the nurse uses this sheet for my file update and my doctor reviews it before we begin our discussion. It is respectful, saves us both time, and keeps us on task.
Another reporting method I offered in the early years, when my symptoms were particularly complex and overlapping, was the preparation of an Annual Report. This two- to three-page document listed the names and contact information of my entire health care team, both western and alternative. It described all medications and interventions I had tried throughout the year and the success, effects, or outcomes of each. Finally, I described my current condition and treatment protocol. My providers uniformly let me know they appreciated this effort and I often arrived for a meeting to find my doctor giving the recent Annual Report a quick review in preparation. As an added bonus, this annual summary not only helped my doctors understand me better, it helped me understand me better.
and I realized if I could link up with one
of them, I had access to them all.
Join a Good Doctor Club: Inherent in all of the above is a final insight. As I made my way through the task of assembling an effective health care team in several different cities, I began to realize each of these communities had what I came to call a Good Doctor Club. These are the physicians and alternative providers who refer patients to each other, call each other up with questions, and seem to have a shared alliance in their desire to provide the best care. Sometimes, while in a meeting with my doctor, a call would come in and he or she would say, “Real quickly, let me take this.” I would overhear a Q & A about what was going on with some patient, and a quick exchange of helpful opinions and advice. This was a Good Doctor Club in action, and I realized if I could link up with one of them, I had access to them all. Ask around and I expect you may also find that nurses, satisfied patients and administrative staff all know who these fine professionals are, because they have joined one of these clubs and these are the providers for their own families.
Living with a chronic, painful condition can feel like a verdict. It can make us feel helpless and victimized by the system. I hope these suggestions offer to you, as they have to me, an element of control and empowerment that can positively improve your relationships, your condition, and your future. I hope that you can join forces with your chosen care providers and by working together learn to live well, even while sick.
About the Author:
Joy Selak was diagnosed with multiple chronic painful conditions starting in her 30s, including interstitial cystitis, fibromyalgia, mixed connective tissue disease and trigeminal neuralgia. She eventually had to leave her career as an investment advisor and endured over 20 years of disabling illness. Now in her 60’s and after many treatment and surgical interventions, Joy is well enough to work part time. With Dr. Steven Overman, Joy is the co-author of two editions of the book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness. Learn more about Joy, her work and the book at the websites: www.joywrites.com and www.chronicinvisibleillness.com.