Chronic Illness Q&A with Dr. B.

This question & answer column is for people living with chronic health challenges and their family caregivers, who want to learn to increase the odds of improving their health by learning to live with mastery & wellbeing. I invite you to post your questions in the comments box below. When I get a certain number of related questions, I pick one that covers them all and I answer that one.

I post to this blog three times per week. Monday posts are relevant published articles. Wednesday posts are interviews—mostly video. Friday posts consist of questions about living better with chronic health challenges, and my answers to them.

QUESTION: Although I understand and appreciate the value of the concept of being the leader of my healthcare team, which you advocate, I’m not a doctor or nurse; so, how can possibly be the team leader?

ANSWER: There is no question that physicians and nurses, by virtue of working within the system, have an advantage. However, with some effort on your part, you can definitely become the team leader and feel completely in charge of your healthcare team.

What I recommend is the following:

• Learn everything you can about your specific diagnoses.

• Learn about all the various treatments for your condition.

• Find out who the top specialists are at the academic medical center nearest your home and work with one of them.

• Get into a study. My immunologist at UCSF recommended a study at NIH. I didn’t meet the exclusion criteria for that study due to all my co-morbid conditions, so, I asked the researcher to find me another study. She did, and I’ve been going to NIH in Bethesda for the past four years. All tests and treatments are free to study participants as long as you remain in the study.

• Prepare for every appointment with a complete list of your most important questions. Take out your mobile device and record the discussions. When you get home, transcribe it onto a document, which you will be able to easily refer to in the future. Keep that document in your mobile device or tablet for easy reference.

• Get a copy of all lab and other diagnostic reports. Scan them onto documents and carry them with you at all times in your mobile device or tablet. I have found them to be invaluable whenever I have to be seen outside the medical center where I normally get my care.

• Keep a list of all your medications including dosages and schedules and other treatments on a document in your mobile device.

• Adopt the attitude that you are the owner of your body, and therefore, you are in charge of your healthcare. As the leader, you go to the best experts you can find. Even within HMOs, you will have choices, but you will have to be assertive.

This website is offered as a free public service, supplying information that has been found helpful to certain people living with chronic health challenges. No treatment is offered on this website. The advice is general, and may or may not apply to your individual situation, and is not a substitute for psychotherapy or medical treatment. What questions do you have about how to live better with chronic health challenges that are related to the relationship between states of mind and health? Just scroll down and type your question in the comment box. I will post a reply to your comment, but your question may not appear in this column.