The Ultimate Guide to Becoming Your Own Medical Advocate

Anna Disease Management & Treatment, Living Well with Autoimmune Disease 2 Comments

Stethoscope, pen, and keyboard with text overlay - Autoimmune Disease Treatment: How to Become the Best Advocate for Your Autoimmune DiseaseI once had someone give me advice after I experienced a series of recurrent early miscarriages.  She said “Just do everything the doctor tells you.”

I get it.  Sometimes, especially in times of desperation and heartbreak, it’s just easier to say “I can’t take it anymore…” and unload the burden onto your doctor with expectations of a diagnosis and solution.  But it’s never that easy.

A doctor can be a great, and even life-saving resource when you have the right one.  I wholeheartedly admit that without my team of doctors and modern-day conventional medicine, I likely wouldn’t have conceived and carried a full-term pregnancy.

Unfortunately, though, doctors don’t know everything.  They never will.

They especially don’t know everything about YOU and YOUR health.

I live with myself 24 hours a day, 7 days a week.  I see my primary doctor once a year for less than an hour at a time.

Tell me – who knows me better?

Who knows YOU better?  Or your child?  Or your spouse?

Medical advocacy is more than just finding a “good doctor.”

It’s more than just knowing your insurance policy and keeping track of your medical bills.

Medical advocacy takes good doctors and turns them into great ones because YOU are in control of your health decisions and know how to best utilize their skills and knowledge for your benefit.

Removing the responsibility of your health from the hands of others and taking it upon yourself is the key to unlocking your fullest potential and well-being.

But how do you get to this point?

How do you build the confidence to walk right into a doctors’ office and navigate the appointment the way you want to?  After all, the doctors are the ones who work for you, not vice versa.

Below are 11 crucial steps to becoming the ultimate medical advocate not only for your own health, but also the health of your family.

Step 1: Evaluate Your Commitment

Frank and I have met and spoken with many people suffering from chronic illness throughout the past few years.  After a while, we started to see a common pattern:

There was this strong desire of wanting to feel better, but after evaluating the effort, it no longer seemed worth it.

“Gluten-free?  Maybe… but not when I am out with friends.  It’s too hard.”

“You mean I have to spend money on supplements?  I can’t afford it (I’d rather spend it on Netflix).”

It’s NOT easy.

We know that.  A diet and lifestyle change can completely turn your life upside down (at first).

But you have to make the decision.  Do you want to be in control of your health?  Or do you need to be in control of your health?

Are you going to wait until you hit your breaking point before you decide things need to change?

Take it from us.  It is a lot easier to heal when you’re not feeling completely broken.  If you have the energy and brain power now – USE IT.

Even if you are one of the lucky ones with no chronic illness and very little ailments, I still encourage you to equip yourself now with the tools and knowledge needed to be your own medical advocate.  Health can take a downturn very quickly and without good health, it is difficult to maintain other areas of your life.

Evaluate your commitment.  If you aren’t willing to commit and you’d rather leave it up to the doctors for the rest of your life, then stop reading.  But if you are…

Then you have made the right choice!  Move on to Step 2 and get ready to take control of your health!

Step 2: Make Your Timeline

Yes.  Literally a timeline.  Like the ones we did in elementary school.  Start from the day you were born and fill in everything you know about your health to this day.  Include:

  • Your birth details (vaginal delivery, C-section, breastfed, bottle fed, interventions, etc.)
  • Vaccinations
  • Antibiotic use
  • Major illnesses
  • Hospitalizations
  • Surgeries
  • Medications
  • Test Results (if applicable to your situation)
  • Stressful events (such as losing a loved one, divorce, large responsibilities at home or work)
  • Accidents
  • Onset/resolution of symptoms
  • Chronic or recurring ailments/infections (ear infections, UTIs, etc.)
  • Pregnancies (if applicable)
  • Drug or alcohol use including tobacco
  • Diet (try to think of stages of your life – i.e. Mom made home cooked meals, then college hit and Raman noodles was it, etc.)

And anything else you deem significant to your medical history.  This can take A LOT of time, but for good reason!  An extensive deep dive into your health history can reveal patterns or discover ailments that you may have never realized before.

For example, take a look at a brief part of my timeline.

Timeline of 2010-2015 displaying Hashimoto's interventions and test results

I was diagnosed with Hashimoto’s disease in 2010.  I placed my antibody levels to the right and some of the various interventions to the left.  There are two very obvious observations that can be made after analyzing the timeline:

  1. Between 2011 and 2013, the interventions I was trying were either not working, or something major happened that sky-rocketed my thyroid antibodies (see test results in red).
  2. It is obvious that changes I made after that test helped to lower my antibodies significantly.

I made this timeline in preparation of seeing a new functional medicine doctor about 2 years ago.  While it was easy to notice that I lowered my antibodies (likely using a new medication called Low Dose Naltrexone as indicated on the timeline), I really had to brainstorm to see what it was that could have possibly caused my antibodies to increase in the first place.

Turns out it was training for a half marathon.  That type of stress does NOT work well with my body.

If I had not made this timeline, I likely would have never caught on to this pattern until much later, if ever.

Creating a timeline is an effective way to recap the health-related highlights that have occurred throughout your lifetime.  The value comes from the ability to use your history to sum up all of the incremental effects that every decision has had on your health.

What most people don’t realize is that a disease (or any ailment) is usually not an instantaneous event, but a collection of events over time that cause you to finally become “sick.”  Therefore, do yourself a favor and begin your timeline now!

Step 3: Start Your Health Journal and Maintain Your Own Records

Don’t let all your hard work of making a timeline go to waste!  A health journal is the next step for not only maintaining that timeline, but also for finding out what interventions are working and what aren’t.

Think of it as one of your biggest tools for becoming an expert of your own health.

Consider the benefits.  A health journal can:

  • Save you time.  If you are ever in a situation where a very thorough history is needed, you have the data already collected without having to think or shuffle through paperwork or digital files.
  • Save you from the frustration and constant guessing of trying to figure out what’s working and what’s not.  Are you trying out an elimination diet to help find your specific food intolerances?  A health journal is going to help you track every time you re-introduce a food and experience symptoms.  The same goes for any time you introduce a new medication or a new supplement.  You have all your observations located in one place.
  • Save you money.  Given the point above – you will no longer spend your money on supplements that don’t work or food you shouldn’t eat.
  • Help you discover patterns or periods of high stress and how your behavior, lifestyle, and/or diet change as a result.
  • Keep you accountable and help you stay on track with any of your health goals.

There are multiple ways to keep a health journal.  An app on your phone, incorporating it into a daily planner, or even just a pad and paper all work just fine.  Find the system that works best for you.

If you still aren’t convinced, be sure to read 10 Benefits of Keeping a Health Journal, or take a look at our guide on How to Start a Health Journal for Your Autoimmune Disease.

Step 4: Let Go of Emotion

Being your own advocate takes guts.

In a world full of medical opinions, you’re entitled to have your own, even as a patient.  But that’s not easy.

Don’t want a flu shot?  The media will try to convince you otherwise (multiple times, in many different ways).  In fact, they will probably tell you to get two.

Thinking that you want to treat that ear infection with something other than antibiotics?  Crazy talk!

Oh, and the whole “gluten-free thing” is just a fad (it’s not).

Remember that there is a marketing department behind every single pharmaceutical drug, supplement, hospital, etc. and it is very easy to manipulate people in desperation of relief.

If something needs FEAR to make people use it, then that is a major red flag to think twice.

Once you are aware of just how much emotions are used in marketing, you’ll be able to spot fear tactics and other marketing ploys from a mile away.  Believe me, it is EVERYWHERE.

I know it’s not easy… but, take a step back from your emotions.  Set them aside and think critically about the situation at hand.  I think you’ll be surprised at how much easier it is to make decision based on critical thinking rather than fear – whether that be fear of a possible complication or fear of judgement from those around you.

Step 5: Begin to Build the Healthcare Team (of Your Dreams!)

While I would love to say that we could all have one doctor that does it all, that’s just not the case.  Even a functional medicine doctor, someone who looks at the entire picture and all of our systems as a whole, may not be able to offer all of the services we need to achieve optimal health.

A healthcare team can consist of a variety of medical doctors in various specialties such as obstetrics and gynecology, dermatology, dentistry, and optometry.  But it can also consist of a variety of other practitioners such as:

  • Naturopaths
  • Acupuncturists
  • Chiropractors
  • Pharmacists
  • Health Coaches
  • Nutritionists
  • Physical Therapists
  • Personal Trainers
My suggestion?

If you already have a team of doctors and/or practitioners, then evaluate them one by one.  Are there any that you don’t really like but go to anyways just because they are “world renowned”, “top class”, or just feel like you have to?  If so, it’s time to find a new doctor.

But if you’re reading this and think you want to start over from scratch and find a brand-new healthcare team, you’ll likely want to start by finding one doctor (the one you will see the most – does NOT have to be your “primary care doctor”) and build your team from there.  This is because:

  1. Like-minded doctors tend to network and know other like-minded doctors and practitioners.  Their referrals can really streamline your efforts for building your team, thus saving you time and money.
  2. Some doctors may have the capability to treat more than you originally thought.  For example, a family medicine doctor treats my Hashimoto’s thyroid disease.  I have no need to see a specialist (endocrinologist), which means one less doctor for me to find.
  3. Once you start working with a doctor you like and trust, he or she will be able to give you better guidance as to what other practitioners you may benefit from.  Having trouble with pain?  A chiropractor or acupuncturist may be your next step instead of a nutritionist.

The most important thing to remember, though, is that your healthcare team can constantly evolve, especially as you move through Steps 6-10 below.

Your mindset and health will change throughout the years.  Some doctors may not meet your standards anymore and you’ll be on the search for a new one.  This is NOT a bad thing and is a great sign that you are really taking charge of your health.  (And if that’s the case, here are some tips to help you find an awesome doctor.)

Step 6: Review Your Health Insurance and Doctors’ Office Policies

I know.  This is the boring part.  But it IS important.

As you begin to build your team of doctors, whether they are conventional or not, you don’t want to unexpectedly find yourself in a sea of medical bills.

There is a wide range of health insurance options now-a-days and reviewing your policy before an appointment helps you to be armed and ready to discuss financial expectations.  If you are on a tight budget, you can determine which tests or services are necessary right now and which ones can wait.

Most conventional medical doctors participate with health insurance, but those policies may be limiting your doctor to only recommending reimbursable treatment options.

It is worth asking if your doctor would offer these same treatment options to his or her family, or if there are other options available that may be worth paying out of pocket for.

Many “holistic” doctors or practitioners have a different relationship with health insurance.  Much of the responsibility is put on the patient to submit for a reimbursement, which may not be covered at all according to policy guidelines.

Some of the diagnostic testing may be covered, however, especially if the practice is associated with a well-known laboratory like Quest Diagnostics.

In our experience, most offices are willing to work with the patient’s financial restrictions, but if you notice that a particular doctor seems a little too salesy, continuously suggesting supplements, testing, or his/her own products, then a little red flag should pop up.  Maybe this isn’t the right place for you.

Step 7: Ask Questions

Even if you think they are stupid.  Even if you’ll be laughed at.  Even if it takes every ounce of your body to ask it.

Never underestimate the power of asking questions.

I learned a lesson when I was a young graduate, fresh out of college and working my first job.  I was a test engineer at a local automotive testing facility and I knew absolutely nothing about cars.

My assignment?  Radios.  Much more complex than an AM/FM radio might I add.  I have a degree in Chemistry – do you think I know anything about radios?

In a meeting one day, I had just finished giving the details of a major issue.  The lead manager asked me to collect some technical data, very casually, as if I already knew how to do it.

Everyone on the call agreed with him.  “Yes, do that.”

Palms sweaty, face hot.  There was no way around it.  I had to ask how to collect the data.

“How, um, how do I do that?”

Silence.  Complete Silence.

Were they stunned?  Shocked?  Maybe they put themselves on mute because they were laughing so hard.

Turns out it was the opposite.  NO ONE on the call knew how to collect the data.  Even worse, they couldn’t even provide me with a resource or contact to find out how!

The lesson I learned?

Anyone can give advice, instruction, and even hold a pretty good debate without really knowing their stuff.  By asking questions, you can unravel the layers rather quickly.

When you reach the bottom of the barrel, you want to be working with someone who says “I don’t know, but I can find out for you and I suggest you do your own research in the meantime,” rather than someone who takes offense when you’re challenging them.

Step 8: Say “No” to Everything at First & Ask for True Informed Consent.  You Can Always Say “Yes” Later.

New drug?  New treatment?

Be careful not to jump right in (this is assuming that your situation is NOT an emergency that requires quick, life-saving decisions).  Remember, doctors have a practice to run.  They are balancing finances, patients, health insurance guidelines, and may have just spoken with a pharmaceutical representative right before your appointment.

You will dig yourself into a deep hole if you think there is no chance for bias.

Instead, tell your doctor you would like to think about it first.  Then ask for:

  • The patient information leaflet/insert (if it is a pharmaceutical drug or vaccine) as well as any other documentation that presents a full breakdown of risks vs. benefits, including actual research literature – even if you don’t fully understand the information (yet).
  • A list of side effects your doctor has seen with other patients and if these need to be treated with more drugs.
  • The benefits your doctor has observed while treating other patients.
  • A list of other options.
THEN, go home, and research, research, research (see Step 9 below).

The internet is a great place to find honest reviews of the treatment you’re evaluating.  This is one of its greatest benefits – people don’t hold back their opinions, especially if a specific treatment has either helped them tremendously or turned their world upside down.

You may have to dig deeper than Google’s results on pages 1 and 2 to find the information you’re looking for.  This is where utilizing social media, such as Facebook groups, and reading personal stories on blogs or forums can be incredibly helpful.

Step 9: Research, Research, Research

First, any doctor that tells you to stay off “Dr. Google” should be fired.  You are perfectly capable of seeking out information on your own.  We live in an age where the amount of resources at your disposal are unbelievably diverse, easily obtainable, and there is absolutely no reason why YOU can’t use them for YOUR health.

Second, I encourage you to start your research well before you see your doctor (and then continue it for the rest of your life).

Why?

Let’s say you are experiencing a recurring chronic symptom, such as chronic fatigue.  Unfortunately, chronic fatigue can have a variety of root causes.  Finding that root cause is crucial.

So, you take a look at the list of possible causes and start to work through them, one by one, trying to determine if one stands out.  It turns out that one does!  An autoimmune disease that aligns pretty closely with how you have been feeling.

Now, you not only have a starting point, but you are well-equipped for your next appointment with a list of specific tests you’d like to have done.

But that’s not the only reason to start your research now.

The purpose of doing your own research shouldn’t be just to find the root cause of your current ailments, but also to educate yourself on common interventions that you may encounter in the future.  It’s all about being prepared, and having done some research into a few of the things in the following list will help you to do just that.  Think about:

  • Antibiotics
  • Steroids
  • Vaccines
  • Over the Counter Drugs (especially for colds, pain, headaches, etc.)
  • Topical Treatments for Skin
  • Supplements/Vitamins
  • Procedures

All of these carry risks and benefits, but are used very frequently without a second thought.  However, after you have done your due diligence surrounding some of the common interventions, you will be more confident knowing that you did your own research and are not just taking people’s word regarding the safety, side-effects, and efficacy.

So where to start?

Use Google.  Read peer-reviewed scientific studies.  Join Facebook groups.  Read the blogs of doctors, practitioners, and others experiencing the same symptoms as you are.  Talk with people in your community.

Despite what many may say, both “science-based” evidence AND anecdotal evidence can be helpful.  In fact, it’s easy for me to say that the majority of my personal healing has come from anecdotal evidence alone.

The human body is incredibly complex.  No study currently will be able to capture and take into account all factors present.  What works for you may not work for someone else.  Remember this while searching for answers.

If you are new to doing your own research, I highly recommend reading How to Read and Understand Scientific Research from Chris Kresser to help you on your way.

Step 10: Remember that YOU are in charge.

Whenever we hear the saying “Talk to your doctor before starting [insert diet, supplement, drug here]…” it’s usually for legal purposes.  Just like how I have to say that I am not a doctor and the content on this blog is not to be used as medical advice.

And yes, talking to your doctor before making changes is a good idea (if it’s a doctor you trust).  HOWEVER, the decision in the end is ultimately yours and that’s what many of us tend to forget.

Instead of your doctor having the final say, YOU have the final say.  This is your health, not your doctor’s and you are paying for his or her medical experience and opinion.  Because ultimately, that’s exactly what it is… an opinion.  And if at any point, you’re feeling uneasy, seek another.

Step 11: Determine YOUR Plan of Action.  Follow It.  Track It.  And Don’t Be Afraid to Make Changes Along the Way.

Hopefully, with your newfound confidence in making your own health decisions, as well as a team of great resources to bounce ideas off of, you can make a plan of action to tackle not only your health issues, but the health issues of your family members and beyond.

You can also learn how to anticipate and prevent future issues that may arise (like preventing the flu!) with your knowledge from your research and can start to stock your medicine cabinet appropriately to treat your family without feeling like you need to rush to the doctor.

Whatever you do, just be sure to always track your plan and remember to be flexible!  The status of your health may continue to change as you age.  Thankfully, since you have decided to take charge, your knowledge will only continue to grow and you will be well-equipped with the confidence and resources to tackle any new obstacles that come your way.

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Stethoscope, pen, and keyboard with text overlay - Autoimmune Disease Treatment: How to Become the Best Advocate for Your Autoimmune Disease

 

Comments 2

  1. I love the timeline idea. Creative but super practical way to get clear on what influences might be at play!

    Love this guide! Can’t wait to recommend it!

    1. Post
      Author

      Thanks for your feedback, Rachel! I made a few updates, specifically under the insurance portion. Be sure to check it out and let me know what you think. 🙂

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