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15 Ways to Become a Better Advocate for Your Own Health Care

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How many times have you heard someone tell you to be your own advocate? But it seems that is all they say. There’s no how-to list or suggestions — just that confident statement that seems like it should mean so much.

How would one even begin to understand what that means without firsthand experience? It can be the most difficult part of being someone with a chronic illness. Unfortunately, our medical system gets harder to navigate by the day, and just when you think you have it all figured out, you will hit a new roadblock.

Being born with a congenital heart defect, I began to learn the meaning of being a self-advocate at a young age. My father is a doctor who always helped me understand the complexity of my disease and how to navigate the medical world, and my mother always encouraged me to be the one to communicate with my doctors and to learn more about the hand God had dealt me. With their assistance, I began to build my toolbox that has carried me throughout my life.

When I was in kindergarten preparing for my third open-heart surgery, my mother, prompted by my inquisitive nature, taught me everything that was wrong with my heart using the walls and interior doors of our house and red apples and oranges. With some fruit and doors, I learned what Tetralogy of Fallot was and how it was different than a normal heart.

The red apples represented oxygenated blood, and the oranges represented deoxygenated blood. With the pocket doors within the house, she showed me where the blood flow was restricted and where the holes in my heart were causing my oxygenated and deoxygenated blood to mix. By just changing the positions of doors and walking the fruit through the house, she showed me everything I needed to know.

I think the picture below sums it all up. This was at one of my pre-op appointments at  5 years old. You tell me who teaching who. I was well on my way to advocating for myself.

boy explaining his heart disease to others

Months later, my heart healed beyond anyone’s dreams, and I told my parents of my wanted to play sports. They said to ask my cardiologist. He was a little taken back, but he said if I passed a stress test, I could play certain sports. That confidence to challenge my doctors taught me that medicine is an art just as much as a science, and over the years, I have come to understand that even the best doctors can only be masters of their craft with patients who are honest and compliant.

These are my 15 lessons I started learning from the age of 5. This list represents 29 years of lessons of how I learned to advocate for myself, and I hope you find them useful, too.

1. Communication.

Effective communication is essential. Write out a list or a letter that includes all your questions and symptoms and take it to your doctor’s appointment to ensure you cover all issues.  

2. Honesty.

Be honest and answer every question as best you can. Don’t tell the doctor what you think they you should say or what your lifestyle should be. Your story is the key to a new diagnosis or your continuing care. Putting your story together is the art of medicine. When we smudge the truth, we are smudging the artist’s canvas with unknown consequences.

3. No secrets.

Tell your whole story. Don’t leave out a symptom because you think it’s inconsequential; that one symptom may be the one clue that finishes that canvas. Let the doctors determine what pieces fit where.  

4. Self-education.

Understand your disease the best you can. We often get caught up in the symptoms, prognosis and treatments of our disease, which are all important. But for long-term care, understanding the relevant anatomy, physiology and terminology will help you better understand your disease and improve the communication between you and your doctors.

5. Understand the answer.

When you don’t understand something, stop and ask for clarification. Some doctors love to speak in complex medical terminology, which is a great opportunity for you to learn more if they follow it up with a simple explanation. But if they don’t, stop them and make sure you understand everything they’re telling you. That’s why you’re there.

6. Ask the right question.

If you aren’t getting the answer to your question, you may not be asking the right question. The answer often lies in the question, take a step back and think about a new approach, keyword or fact that you’re missing. Asking the right question is as important in communicating with your doctors as it is when researching your disease and treatments.

7. Don’t settle.

You know your body the best. If you feel like something isn’t right, don’t settle until you have an answer. Sometimes that answer maybe “we don’t know,” which may be a reality depending upon your disease. That is your chance to determine if you want a second opinion.

8. Challenge your providers.

Challenge, question and make suggestions to your doctors. You’ll be surprised how often they will be receptive to your insight if you have done your research and communicate in an efficient manner. It may be a change of medication or your entire course of treatment. Don’t always take their answers as the end all be all. Work with them to get what you need and question them when needed.

9. Key player.

Know the one provider you can call when you need it. It may be any one of your doctors, a nurse or program coordinator. As you build your team, know who you can count on when things aren’t getting done or if you’re in desperate need of help.

10. Learn from others.

Find other patients with your disease. They will open your eyes and make you not feel so alone. You’ll learn from people who have already gone through what you’ll be experiencing and gain insight into the answers that worked for them. Finding these resources will help you ask the right questions, but just as importantly, it will help you mentally as you navigate life with a chronic illness.

11. Research with pessimism.

The internet is full of good and bad information. Find out which sources provide real data and information that can help you make an informed decision and formulate substantive questions. Most importantly, know when to walk away. When you get overwhelmed, turn off your computer and call it a day — or maybe even a week.

12. Be persistent.

You didn’t hear back from your doctor? Well, call again and again. Keep at it. Find an email address or another form of communication. It’s your health and your life — take control.

13. Get what you need.

Never be afraid to change your care. You may feel the need the switch care but may also feel guilty leaving your doctor. But you don’t owe them loyalty if you don’t feel comfortable with them or think they’re not helping you the best they can. And make sure it’s them and not you because nobody will be able to assist you if you are the source of the problem.

14. Don’t run out the door.

Always leave your appointments with a follow-up scheduled and all referrals and labs in hand even if they’re in another office in the same facility. We assume electronic medical records have made these things seamless, but they often make them more complicated. There is no substitution for a hard copy — paper is still king.

15. Don’t fall into the feel-good trap.

If you have a chronic illness, get as much accomplished with your medical providers while you feel good. You are patient for the clinical setting, not the acute care setting. You may get stable in the hospital, but your long-term success depends upon you seeking treatment and attention when you “feel good” from the specialist who has time to help you develop a long-term plan and dive into the details of your case.        

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Lead photo by Thinkstock Images

Originally published: December 2, 2016
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