International MPN News, Science & Opinion

The empowered patient – April, 2012

by Michael Goldstein, M.D.


Top 10 Ways to Be More Empowered

April is my birthday month, and because I am facing a big one (60!), I decided to share 10 strategies that I have found useful in my own personal quest to become and remain empowered.  I am counting on these strategies, which I learned from leaders in the patient empowerment literature, to enable me to self-manage my MPN and live a healthy, happy and productive life.

So, here’s my top 10:

  1. Ask questions
  2. Share your concerns
  3. Find a health care team that supports empowered patients
  4. Read (a lot)
  5. Reflect on what’s really important
  6. Connect with others
  7. Empower your family and other caregivers
  8. Set achievable goals
  9. Track and evaluate your progress
  10. Follow your passions

1. Ask questions

Prepare for each visit with your doctor by writing down questions about your condition, your treatment and your symptoms. Then prioritize your list so you get the answers that are most important to you.

2. Share your concerns

Let your health care team know what you are worried or anxious about, as well as your concerns about the way you are being treated.

3. Find a health care team that supports empowered patients

This is a tough one, as many of you don’t have the option to choose. If you are not happy with how your doctors and nurses are responding to you, let them know. Hopefully, they will become more accommodating.

4. Read (a lot)

Learning about your condition and new treatment options will help to you know what to ask (e.g., “How might this new treatment help me?”). MPNforum, MPN list-serves and websites can help you learn what to read.

5. Reflect on what is really important to you

What are the roles, activities, goals, issues and values that matter most to YOU? Reflecting on your priorities and preferences will help you to choose among treatment strategies, especially when there are tradeoffs between the effectiveness of a treatment and it’s side effects and potential complications.

6. Connect with others

Find others with your condition (on the Forum, lists, in your community) and engage in dialogue. Supporting others can be as empowering as being supported!

7. Empower your family or other caregivers

Keep your family members or caregivers informed and don’t hesitate to reach out and ask for help when needed.

8. Set achievable goals

Identifying and reaching a health goal, even a tiny one, is a powerful way to enhance your sense of confidence and competence.

9. Track and evaluate your progress

Monitor and keep a record of your treatment, tests, and achievement of personal goals. Celebrate your progress!

10. Follow your passions

This strategy is definitely my most important long-term empowerment strategy. When I pursue activities that I care deeply about, I have more energy, satisfaction and enthusiasm for life, which fuels all else that I do!

As I approach the big 6-0, I am deeply appreciative of all those who have helped me to become more empowered, particularly my family who have permitted me to pursue my passions and lean on them for nurturing and love. I also have also gained empowerment from my fellow MPNers, their caregivers, as well as from my superb medical team. So many of you have helped guide me and support me during my journey with PV. I look forward to hearing from you about what you have found most empowering. Please leave a comment or write to me to share your experiences about empowerment.

Take me back to the Contents

© Michael Goldstein and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Michael Goldstein and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "The empowered patient – April, 2012" (8)

  1. Thanks Michael for very helpful overview of strategies. One that particularly helped me was “share your worries”- I realized that I go my docs well armed with questions and reports from other docs (I have to be my own e-file as even in this City of 1 M, there is no commonly shared data base of your medical info), but I don’t specially state what my top of the line worry is. So I tried It on a doc yesterday, and it was very helpful.

  2. Debbie Fersh Shapiro said:

    Great advice, Michael! Even back in 5th grade I knew you’d be a success — I wish you were my doctor. And have fun being 60 — I’m thoroughly enjoying it.

  3. Thanks, Manuela, Bonnie and Arch. Each and every one of these strategies have helped me. Any 1 can enhance your capacity to self-manage. I can’t wait till 60!

  4. Hi Mike, Your ten ways to empowerment maps a safe and well marked route. Thank you. For me #5 is often the most difficult to get across to my doctors. They seem more interested in what they see as their duty as physicians instead of as doctors in deciding the things I need and what’s best for me. I want them to understand why I’m there and what ‘I’ expect from them. IOW, I’m seeking advice, not control. Arch

  5. Excellent advice. Remember, 60 is the new 40.

  6. since I’m one of those people who’d rather not be reminded about birthdays, it must have seemed strange to my folks in Cape Town when I announced that I’d be visiting them in April. So, thank you for sharing your ten strategies for self-managing. Nine out of ten I can do! Leave you to guess the one which presents a major problem!

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