PCOSA Awareness Association

Why You Must Become An Advocate For Your Health

Image of stethoscope isolated on white background.

By Frieda Wiley, PharmD, CGP, RPh

When I was first diagnosed with PCOS, I was both relieved and frustrated.  The relief came from finally having a label to identify the odd and inconsistent behavior in my body I’d noticed since I’d begun “the change”.  The frustration came with the thought that, despite having gone from doctor to doctor, OB-GYN to OB-GYN, and having had in-depth discussions with my primary care physician, I had not gotten any answers, only prescriptions.

I noticed something seemed not quite right when I was a teenager, but unfortunately, it would be nearly two decades before I found a doctor who would give me a diagnosis and an explanation.  In fact, nearly every doctor I saw—even female physicians– discounted my symptoms and tried to push birth control pills off on me—even when I was a young teen!

Over the years, I would see quite a few OB-GYNs, but not one of them had hinted that this might be the problem.  In fact, only one of them had bothered to test my hormone levels, but when the results came back, the physician casually stated that my hormone levels were “all within normal range, but even though they might within normal range, it may not be normal for me.”  That was the end of that part of the discussion.

However, she also proposed that I lose weight.  She told me that I wasn’t “fat”, but that the more body fat you carry– regardless of your size– the more likely your hormones are to be out of whack.  She didn’t provide any additional explanation or offer any other information for my symptoms or what I was going through, let alone recommendations of where to turn for more help.  As a young woman fresh out of school and new to a strange city, I left her office worried, confused, and unsure of where to turn for answers- or help.

Throughout the majority of my life, I have always eaten a diet that my doctors considered significantly healthier than the so-called Standard American Diet (SAD).   Some people labeled me a “health nut”.  I ate plenty of fresh fruits and vegetables, and chose organic produce and meats as much as possible.  I exercised regularly- sometimes every single day of the week.  I was never “the skinny girl” although I did have my moments.  I was very muscular, and I just assumed that I had inherited a large frame, as what runs on one side of my family.  More importantly, I was okay with that frame- even if others weren’t.

Still, my body had these rare moments when, without making any changes to my diet or physical activity, I would miraculously shed 10 to 15 pounds and appear rather svelte.  I used to call it my “summertime body” because it often happened in the summer, and usually by early fall, the weight would return.  Somehow, I was “thin” by popular opinion during my entire senior year of high school.  However, my symptoms never really seemed to improve regardless of my dress size.

A few years a later, I discovered Billy Blanks’ Boot camp, and not only did I become strong and more fit, but the extra weight came off—and stayed off for years.  I had a slip up during one summer, but it was because I experimented with my diet, and ultimately paid the price.  After I resumed my previous diet and Boot Camp, the body came back, but the symptoms never really went away- no matter what.  I noticed the consistency in my figure seemed out of character for my body, but I accepted it without question.

I later went to another OB-GYN who is nationally-known and frequents various television shows to lend her expertise.  I assumed that, because she was considered an expert in her field, surely she could help me.   However, even she quickly dismissed my symptoms and wrote a prescription for birth control—which was not an option for me.   She had not even asked me whether I had a family history of blood clots before she wrote it!  I was crushed.

So, once I became a medical professional myself and began consulting, I saw countless patients with various complaints that were unresolved.  These patients- male and female– had many symptoms and various complaints that were not resolved simply because the patients were not seeing providers who were specialists in those areas.  As a clinical pharmacist, I carefully gathered information regarding the patients’ complaints and medical history and recommended that they seek the opinions of practitioners with specialized expertise in the areas that concerned them.

Then, when I was due for my next annual check-up, I decided to take my own advice.  I asked my primary care doctor if he could refer me to a physician who was not only specialized in gynecology but who also had a strong background in endocrinology.   I lucked out with my referral:  After seeing this doctor and going through a series of tests, I received my official diagnosis: PCOS. However, he did state that my symptoms were “atypical” and that it was a “diagnosis of exclusion”, in that he had ruled out all other possibilities.

I would like to emphasize that the fact that I do not blame the physicians I’d seen over the years for not having given me a diagnosis.   I realize that PCOS was not widely recognized, studied, or understood 20 years ago as it is now.  I am glad that it has gained momentum. Otherwise, I might still be searching for answers.   It is also possible that I was not sharing with doctors all the information they may have needed to give me more information or direct me to the correct specialist.

My search for information may have been a long one, but I also recognize that I had the advantage of being able to tap into my background to ask the right questions to get the right information.   It saddens me to think there are others out there who may not have access to such information, let alone someone to advocate for them.

All of this to say that, as a human being, as a person, and more important, as a woman, we must be our own advocates for our health and well-being.  You are the sole owner of your body.  It is up to you to take care of it and honor it.

I have spent hundreds of hours counseling patients on their medications and lifestyle choices to try to help empower them with information that will improve their health and ultimately, the quality of their lives.  In this time, I have learned that many patients are not successfully treated because they don’t really understand the nature of the treatment and might be less likely to commit to it as a result.  I have realized that, regardless of what treatment plan a patient is given, you have to make sure the patient feels comfortable with the treatment plan.

Oftentimes, patients- people- want to feel like they have choices.  As a patient, I did not feel comfortable with taking birth control pills without knowing or truly understanding what was going on with my body.   I also did not feel that it was an appropriate choice for me for a variety of reasons—even as I entered my teens.

Sometimes, patients are afraid to ask their doctor’s questions or voice a concern.   The reality is that, if you don’t speak up, who will speak for you?   Do not be afraid to ask questions, seek other opinions, or express a concern.  Never be afraid to trust your gut instinct.   You must be an advocate for your health.  And, if you are unable to advocate for yourself, don’t be afraid to reach out to a friend, spouse, or family member to speak up for you.

Sure, taking birth control would have helped manage my symptoms, but taking it before knowing what was truly happening in my body would have made it more much more difficult to get a proper diagnosis.  I chose to speak up, and in many cases, that meant walking out of one office and into another.

You have to understand how difficult it was for me to write something so personal that others might read the world over.  However, if I kept this bottled up inside, if I concealed my struggles and triumphs in this journey, then who would I be helping?   My parents come from a generation and culture where people did not discuss healthcare information openly.  As a result, what I learned about my family health history I learned mainly by being in the right place and the right time, and in some cases, being downright nosey.   I understand that they came along during a different time and that such was the accepted cultural norm.

But, this is a different day and age, where information is more readily available.   Information and access to that information are empowering.   I want to empower others with the information so that they realize that they have choices, they have options, and they have the right to ask questions—and get answers.  Communication is key.

Yes, it is great that I have an official diagnosis now because with it, I have the opportunity to begin the healing process.  I realize that since, it is a syndrome, I may never truly be cured of it, but that still doesn’t mean that my body cannot heal.   In fact, despite the fact that this is a life-long health challenge, the diagnosis in of itself has been a bit of a blessing in a very ironic sense:   In trying to improve my symptoms, I have become more in tune with my body, nature, and others.

When I received my diagnosis, I was under a lot of stress and it had taken a severe toll of my body and my spirit.   I was an emotional wreck.  I realized that I needed to slow down and take it easy.   For the first time in my life, I actually allowed myself to do that.

In the same way that you give yourself permission to take a break or slow down, give yourself permission to seek information and be an advocate for your health!   Early in my journey, I began getting opinions and advice from integrative practitioners.   I changed my diet and became committed to a near-daily practice of yoga.  It has been nearly two years, and my weight has stabilized again, and above all, I feel incredible.

I think one of the most important things I did that really helped me when I began this journey was keeping a journal.   I carefully documented everything I ate, how I felt, any physical or emotional changes I’d observed.   Over time, I noticed that my continued journaling evolved into something more than just a record of my health as I sought to improve it- it became a form of therapy.

I have also found journaling is a great way to document your medical history so that when you have those initial discussions with you doctor or other healthcare professional, the information is already there.   This is a great help to the both of you.  It helps get the dialogue rolling.  It is another way that you advocate your health.   Communication is key.

Regardless of where you are in your journey or where this journey may lead you, I challenge you to become fearless in your pursuit of the treatment plant that is right for you.  Set yourself up for success by finding a healthcare provider with whom you feel comfortable and who listens.  They are out there and waiting to help.  Just remember that it all starts with being an advocate for yourself and asking the right questions.

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