How To Be Your Own Healthcare Advocate

How to be your own healthcare Advocate - How to take control of your medical care.I’m at the doctor’s office taking my post gestational diabetic test.  I’m really, really hoping I didn’t end up with diabetes from this pregnancy.  Scary, scary stuff.

During one of my draws, I started a conversation with one of the pregnant women in the lab area.  She was 36 weeks and just getting the gestational diabetes test done.  Typically they recommend getting the test done at 25-26 weeks.

She had an elevated 1 hour test which means there is a strong possibility she will have gestational diabetes.

Because of the delay in her potential diagnosis, her baby may have been dealing with elevated sugar levels for an extra 10 weeks.  In baby development land, that is a long time.  I’m not going to get into the medical implications of this, but here are a couple of articles that explain how dangerous this should be.

The mother I was sitting next to is furious at the doctor’s office and in the process of switching to a new provider. 

She was last pregnant over nine years ago and didn’t remember all the testing, but had randomly asked the doctor when she was supposed to have the test done last week.  The doctor was shocked that she hadn’t gotten it done and immediately ordered it.

The mother is very upset at the doctor’s office for missing such a critical test.  I can understand her frustration, particularly if she ends up having gestational diabetes.

What people often forget is that doctors are human and make plenty of mistakes.  With the amount of patients they see each day something is going to get missed.  A good EMR system should capture a mistake like this, but even that isn’t a guarantee.

What all this means, is that as consumers we have to be proactive about our medical care. 

I wasn’t anywhere near as good at this as I should have been during my pregnancy but did do a lot of research.  I looked up all the tests I needed and knew what and when to expect them.   I asked questions at the doctor’s office.  I talked to other mothers and asked for their advice.  I did a ton of research online.

I got a lot of information and sorted through it to come to my own conclusions.  I didn’t take what one website or friends said as the complete truth.  I didn’t assume that just because I found the information on one website that my doctor was wrong.  I also didn’t always assume my doctor was right either.

Medicine isn’t an exact science.

There is not an exact outcome to a set group of factors.  Each body will respond slightly differently to the same set of parameters.  This makes diagnosing someone very difficult.

All of this to say that as a consumer, you have to be your own healthcare advocate.  Yes, the doctor should have ordered this critical test.  But, at the same time, you must take responsibility for your own care.  No one else cares as much about your body and your new baby as you do. 

You must be your own advocate.

So how can you become your own healthcare advocate?

1.  Ask Questions

If you have a medical issue your job is to ask as many questions as possible.  Ask, Ask, Ask.  There is no such thing as a stupid question when your health is at stake.  If something sounds wrong to you, question it.

If this is a serious medical issue you should become an expert.

Don’t assume you doctor is always right.  If you aren’t asking questions then you may never catch the doctors errors.

2.  Find the best doctors

The right doctor will make all the difference in your treatment.  Do your research on doctors.  Ask friends and family for recommendations.  I’ve asked for recommendations on Facebook and have gotten some great results.

If you have hesitations about your doctor switch.  Does your doctor take the time to answer your questions or do you just feel like a number?

Watch the interactions of the office staff.  You can tell a lot about the doctors by how the staff interacts with each other.  Good staff typically means good doctors.  Good staff will rarely stay with bad doctors for long.

Ask questions about their billing practices.  Do they outsource or keep everything internal.  Both can be good, but knowing you can easily get a hold of someone when you have questions is important.

Ask about Mid-level providers (PA’s & NP’s).  I’ve worked in the medical field now for a total of 15 years.   When I first started very few offices used extenders (Mid-Level providers).  It is now common practice.  I’ve known some Mid-Level’s that I would trust over doctors.  I’ve known some others that just aren’t up to speed.  I’ve known doctors that are the same way.

Medical providers are just like the rest of us.  There are some that take their job very seriously and others that are there to collect a paycheck.

3.  Find a support group

I didn’t join a formal support group but did find a few friends who had gone through gestational diabetes.  Their support was invaluable.  Just knowing you aren’t alone makes a huge difference.

Shortly after my diagnosis with Gestational Diabetes I joined a support group on Facebook.  It was one of my best decisions.  Reading about other people’s experiences really gave me the boost I needed when I was struggling.  I was able to find answers to many of my questions by reading others posts.  I could ask questions in a non-threatening environment and was directed to resources that I may not have been able to find on my own.

I do have a word of caution about support groups.  Take what people say with a grain of salt.  There was a lot of misinformation floating around in those groups.  Which is why number four is so important.

4.  Do your own research using reputable sources.

Just because you find something on the internet doesn’t mean it is the truth.  There is a lot of misinformation floating around.  Be smart and careful.  Use your common sense.

Look for multiple sources that state the same things.  Use reputable websites that are monitored by doctors.  Look for footnotes that reference where people obtained the information.  Make sure that the footnotes are legit.

When I was researching gestational diabetes I was shocked at the misinformation on various websites.  It didn’t take long to figure out which sites were legit and which ones were just trying to make a buck.

Sometimes the information is just accurate enough to leave you confused.  When this happens don’t hesitate to speak with your doctors.  Again doctors aren’t infallible, but they have access to resources that can answer many of your questions.

Read, Read, Read.  You need to become an expert on your condition.  No one is going to care for your health as well as you will.

5.  Follow through on what you learn

This one sounds kind of obvious, but it is so easy to ignore your own health.  It is a hassle to eat healthy, take your vitamins, do your blood work and all the other stuff that comes with a negative medical diagnosis.

I saw a lot of this on the Gestational Diabetes forums.  I could not believe the amount of people who weren’t taking their health and more importantly their baby’s health seriously.  Cheating was the name of the game.  People would do crazy stuff to avoid being put on insulin.  They would talk about the horrible food mistakes they made and their subsequent bad numbers.

Obviously, this is going to happen occasionally, but when it happens on a daily basis, you just aren’t doing your part.

You can’t be your own healthcare advocate if you aren’t going to take the knowledge from the doctor and your research seriously.

Final Thoughts:

It is interesting to me how much my little brush with poor health impacted me.

I’ve always been super healthy.  I hadn’t spent a day in the hospital prior to having Ella and the only surgery I’ve ever had was elective eye surgery.  I did break my leg years ago which wasn’t fun, but it isn’t the same as knowing that I may have a potentially life-changing diagnosis.

Diabetes is a life sentence, not a short term injury that will heal.

Regardless of your potential condition, please don’t end up like my new friend.  Take your health care into your own hands and become your own best advocate.  I’m not sure what ended up happening in her case but hope the test went well.

Editorial note:  I’m finishing up this post a few days after I started it and was informed last night that I didn’t develop diabetes from my pregnancy.

I almost started crying when I heard the news.  It was such a huge sense of relief to know that I’m free and clear.

However, the knowledge I gained from the experience is mine to use.  My eating habit have and will continue to change.  I’ve cut my carb consumption – particularly sugars and increased my protein levels.  I’m not going to do a true diabetic diet, but I’ve mortified my eating habits permanently.

Hopefully, most of you will never need this post, but if you do please let me know if there is anything I can help you with.

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