Becoming Your Own Health Advocate

Health Care is not One-Size-Fits-All.

You know there is a reason they call it “practicing medicine.” Doctors don’t have all the answers. There’s no Magic 8 Ball sitting in their office solving all of the great medical mysteries. Many women, especially, take years to get diagnosed (read more here). Trust me. I know. 

This post isn’t meant to bash the medical community by any means. Having been treated for fibromyalgia and endometriosis, I have seen my share of doctors over the last 30 years. I have had some great medical care over the years…and I have had some not so great medical care. I have had doctors who would prefer to treat a symptom and send me on my way, rather than look for the root cause of my collective symptoms. And I have had some medical mysteries that have perplexed many a health care provider, leading to endless doctor visits, expensive (and quite possibly unnecessary) tests and medical expenses, and no explanations.

As Pain Awareness Month comes to an end, think about the other side of medical care – diagnoses, benefits, and billing. So what do we need to do to take our health into our own hands and advocate for ourselves?

“The art of medicine consists of amusing the patient while nature cures the disease.” 
― Voltaire

Health Care is Not One Size Fits All

Diets, medications, and treatments. Not everyone responds the same to all things. My body may not tolerate gluten or pain medication the same way as someone else. We all need to take matters into our own hands and know what works for us, or doesn’t, and know when things just don’t seem quite right. Like a good boy or girl scout, be prepared when visiting the doctor.

5 Tips for Being Your Own Health Advocate:

DON’T Believe Everything You Read


While googling our symptoms, checking WebMD or Health Wikis, or asking Siri or Alexa may seem tempting, you shouldn’t believe everything you read. Those things may give you some ideas to discuss with your doctor, but a medical professional is better able to correlate your symptoms, test results, and findings than  an online medical encyclopedia.

But be sure to ask Alexa “How much do you weigh?” or tell Siri, “I think I have bronchitis,” and see what response you get back. Laughter, after all, is wonderful medicine! 😉

DO Keep a Journal

I recommend that you track your medication and dosage you take, your food you eat, how much you sleep, and your symptoms after medication and potential food triggers. This can be in a paper journal or an online one (I use OneNote for symptoms and lengthier medical mysteries, and I use MyFitnessPal for my food intake and symptoms I believe are related to food. And I wrote about other tech trackers in this blog post.)

Image result for journal

Tracking your concerns and symptoms ensures you won’t forget anything when you see your doctor. Review your notes ahead of time so you are prepared with any information you want to share.

Let’s face it, doctors can only spend so much time with you listening to your symptoms, looking at your test results, and examining you. On average a family medical doctors spend 15-20 minutes with each patient, so you had better be prepared to talk!

“The good physician treats the disease; the great physician treats the patient who has the disease.” William Osler

DON’T Be Afraid to Ask Questions
Image result for ask questions

Put that medical journal to use and ask your questions. Doctors know a lot of things, but they won’t know what you’re thinking or concerned about unless you speak up. Tell them about the weird side effects the prescription gave you or how you wake up every night at 3:00 AM. Ask them about treatment options or about tests they have ordered. Are these medically necessary, or just shots in the dark? They should be happy to explain these things to you.

And don’t be afraid to get a second or third opinion.

DO Know Your Medical Benefits


Become educated on what your plan covers and doesn’t cover. Who is in-network and out-of-network. Medical care isn’t cheap, and you don’t want or need some unexpected expenses because you used a provider that you thought was covered.

Case in point: My primary care doctor ordered lab work that wasn’t covered under my insurance at the time I had it done (it is now), and I was given misinformation by the testing company up front. Should have called my insurance company, because now I am stuck with a bill and fighting through the appeal process.

“America’s health care system is neither healthy, caring, nor a system.” 
― Walter Cronkite

DON’T Be Afraid to Challenge Medical Billings and Insurance Companies 

I highly recommend that if you don’t review your Explanation of Benefits (EOBs) statements and compare them to what you paid and/or were billed, start doing it. Now. You cannot believe how many errors you will find.

You have the right to appeal decisions made through your insurance company and through your state insurance office. You have the right to ask questions about your bills. Through my employer, we even have a patient assistance service called Compass that is an advocacy service, will review medical bills, and will help you find providers, among other things.

Case in point: This year alone I have found four separate billing issues for medical care my husband and daughter received. We were over-billed and improperly billed. After reviewing the bills + EOBs and making a few phone calls, I got us refunds of over $1100 and a bill that went from $1200 to zero!

It’s worth a shot. These things can add up! $$$

Practice Makes Perfect

“Ours is a technologically proficient but emotionally deficient and inconsistent medical system that is best at treating acute, not chronic, problems: for every instance of expert treatment, skilled surgery, or innovative problem-solving, there are countless cases of substandard care, overlooked diagnoses, bureaucratic bungling, and even outright antagonism between doctor and patient. For a system that invokes “patient-centered care” as a mantra, modern medicine is startlingly inattentive—at times actively indifferent—to patients’ needs.”

~ Meghan O’Rourke, excerpted from Doctors Tell All, and It’s Bad

I hope I have given you some ideas for taking some ownership for your own medical care and billings. I don’t think we can be content to rely on a single diagnosis and believe everything the first doctor or the first bill says. It can often take multiple visits to get to the bottom of things, but trust your gut if it’s telling you something is wrong.

I have seen my share of health issues over the years. Keeping a medical journal, doing some research, and going prepared to ask questions has helped tremendously with getting the care I need. Doctors may have the extensive training, but they are still just practicing medicine, and I can help them along.

Update 02/06/2019: For another perspective, read Kim’s thoughts on medical advocacy at I Tripped Over a Stone: Who Has Your Back?

Do you have other DO’S and DON’TS for navigating the medical or insurance systems?

2018 Nominee for Best Kept Secret

Author: Cynthia, My Inspired Fibro Life

Wife. Mom. Fibrowarrior. Joy seeker. Picture taker. Coffee drinker. Blogging about living with fibromyalgia and finding inspiration in every day life. Welcome to My Inspired Fibro Life.

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