The Stigma

 

I was 19, I woke up in my dorm room with an excruciating pain in my head.  Dizzy, nauseated, unable to stand or talk.  Literally crippled in every way except to feel the enormous weight of the pain.  My room mate had been out all night and was in a dead sleep, there was no way I was going to wake her for help.  Eventually, I was able to roll out of bed on to the floor and crawl down the hall to the bathroom to throw up.

Thats where my journey started.  A journey I have been on for the last ten years.

After that day, I began to struggle with crippling migraines.  I passed out frequently.  My gastrointestinal system was my worst enemy.  Muscle pain and spasm.  I saw my primary doctor and a neurologist, who agreed, it was “just anxiety”.

“So often we see YOUNG WOMEN who come into our office and they complain about this or that and they think they are ill, but really, they are JUST ANXIOUS and its all psychosomatic”.

They told me I was crazy.  They found a passive aggressive way to label a young female.  I was victim to the stigma.

Please understand, that it is not my intention to down play the diagnosis of anxiety or depression.  Those are very real diagnosis with very real, often debilitating, implications.  There are also diagnostic criteria that one must meet, to be diagnosed with such a disorder.  Diagnostic criteria that few doctors take the time to actually investigate.  My intention here, to share my story, and to address, specifically, the stigma that surrounds women’s healthcare and the idea that women are often labeled inappropriately as “just anxious” which results in the refusal to investigate medical causes, despite an obvious need.  Many doctors also refuse to investigate a possible medical cause for the depression and anxiety.  Its thought, that true depression in a chemical imbalance in the brain.  But there are many medical conditions that can cause psychiatric symptoms or mimic the symptoms of anxiety or depression.  Many of those conditions are also very common in young women.  For example, thyroid disorders, anemia, chronic yeast infections, Vitamin D deficiency or other essential trace nutrient deficiencies, tachycardia and palpitations, irritable bowel syndrome, chronic fatigue, fibromyalgia, lupus, hormonal imbalance and more.

The idea of quieting the female’s needs for healthcare is not new.  For centuries and centuries, men have viewed the female body as unclean, possessed or sickly.  Even outside of healthcare, women have been viewed as the lesser species whose needs have been left invalidated.  The female race has made huge strides in the last few decades towards equality, but healthcare is one prime example of how the gender gap is still immense.  This article from The Atlantic discusses this very issue as it regards to pain presentation.

“Women are likely to be treated less aggressively until they prove that they are as sick as male patients.”  The Atlantic reports.  This has certainly proven true for myself.

For ten years, I pushed.  I saw my internal medicine doctor over 30 times with the same set of complaints.  Chest pain, rapid heart beat, syncope, debilitating abdominal pain, shortness of breath, dizziness and fatigue.  I was in the emergency room for syncope 5 times in the course of a year.   For abdominal pain with near syncope 4 times.  I saw the nurse practitioner 5 times.  I saw the neurologist every three months for two years.  Every visit, anti anxiety medications like xanax or SSRI’s were offered.  In 2006, while in nursing school, the syncope began happening daily.  During my 5 ER visits, no labs other than a basic blood count were done.  My diagnosis leaving the ER was syncope due to anxiety and pre-menstral syndrome.  While seeing my primary doctor for follow up, I begged him to look deeper.  I gave him a list of labs I had found in my text books and asked him to order them.  He knew they wouldnt show anything, but he obliged.  He was wrong.  My blood counts were very low.  I began seeing a hematologist for weekly iron infusions.  I felt validated.  I knew I wasnt “crazy”, as had been insinuated for so long.  But as we searched for a cause for the low iron and none was found, I knew this was only part of the puzzle as well.  While the iron decreased the syncope, other symptoms began to develop.  the tachycardia became more severe, my muscles began to cramp and pull.  I started having degeneration in my spine.  In fact, so severe, that I had to have emergency decompression surgery.  Emergency because, I was not taken seriously in the earlier 3 ER visits that week.  I was called a “drug seeker” and sent away by my colleges.  It took calling in a personal favor to a surgeon friend to get an MRI, which showed the nerve compression so severe, they werent sure if I would walk again.  I was crippled by fatigue and shortness of breath.  Many obvious and serious medical, tangible issues and yet, the only diagnosis in my chart was anxiety.  “Just try some prozac” my doctor would say.  I refused.  I wanted to get off the couch, but I wasnt able.  This was not a case of the blues.  This was physical.  In 2015, I sought out a new OB/GYNE due to an insurance change as I was newly pregnant.  Unfortunately, the first time I met that doctor was in OR while having a D&C because I had miscarried.  A few days after the D&C I started hemorrhaging at home.  It was very a difficult and long process to get the bleeding stopped.  I saw this new doctor in the office three times.  He was concerned, but perplexed.  The miscarriages and bleeding along with the other symptoms, had him thinking there was an underlying cause.  In two months I was pregnant again.  I lost this baby as well.  While he held my hand, he explained to me, that these things often happen for a reason.  He took a very detailed health history, he drew blood.  The blood work showed an MTHFR mutation.  This gene mutation is very common among the general population, and for many may be insignificant, but for me, it was another piece to my puzzle.  A red herring, if you will.  In two more months, I was pregnant again.  Thankfully, this pregnancy was successful and we now have our sweet Lukie Boy, as we call him, but it wasnt without complication.  The tachycardia again became more severe, the shortness of breath was so severe I was on the couch most of the time.  The syncope was multiple times a day.  My doctor looked at me and said, “Ive been studying.  I think its POTS”.  We talked about how I have had these symptoms for years.  We discussed how this is likely what I have had all along.  The doctor validated that POTS is often misdiagnosed as anxiety.  he explained how many doctors are uneducated on POTS and how many patients search years for answers.  He explained how the majority of POTS patients are female and how there is a real stigma against females when they use key words like “chest pain” and “fast heart” and have syncope.  He explained to me, exactly what I already knew.  I had a medical condition that had never been investigated because I was young and female.

The doctor ordered and echocardiogram, and holter monitor and lab work, all of which came back significantly abnormal.  He sent me to a cardiologist.  “the best of the best”, he told me.  The cardiologist acknowledged the POTS, but refused to do any work up.  Again I pushed.  I self referred to Cleveland clinic where I was diagnosed with Ehlers Danlos Syndrome and POTS.  The doctors there did a tilt table test, which shows my heart doesnt get the oxygen it needs.  They confirmed, two very complicated MEDICAL diagnosis for all of my symptoms. The doctors there explained to me that POTS is often misdiagnosed as anxiety. The following exerpt is taken from Dysautonomia International:

“Some of the physical symptoms of POTS overlap with the symptoms of anxiety, such as tachycardia and palpitations, POTS is not caused by anxiety. POTS patients are often misdiagnosed as having anxiety or panic disorder, but their symptoms are real and can severely limit a person’s ability to function.1,3 Research has shown that POTS patients are similarly or even less likely to suffer from anxiety or panic disorder than the general public.3,5,6,7 Research surveys that evaluate mental health show similar results between POTS patients and national norms.20″

As I begin to revisit my doctors here, the reception has been mixed.  Some are apologetic.  In awe that I have managed to function so well, despite.  They are eager to learn more and develop their understanding.  Some are less than empathetic and want to know how I managed to coerce the doctors there out of a diagnosis.  Not surprisingly, those doctors are the same ones who refuse to even look up my conditions and educate themselves.  Those doctors cant see past the normal labs and “insignificant” test results.  Those doctors refuse to take the time to put many seemingly insignificant pieces together, to make sense of a very significant whole picture.  Those doctors cant see past the stigma.  They cant understand that my complaints are hidden due to years of compensation.  They arent open to hearing the concerns and looking past the young female shell in front of them.  They can see the concerns in their two minute, hands off, exam, so it must be psychosomatic.

I have learned, in my time as an RN and probably more significantly, a patient, that doctors are human.  Many assume the letters behind their names means they are an authority in all things medical.  Anyone can earn letters behind their name with enough determination.  The letters themselves, hold little significance if one cannot see past their own hubris.  Please understand that I am not a “doctor hater”.  Quite the contrary.  I rely on doctors for care and direction.  But I also do not have false misconceptions about titles.  As with most things, you have to shop around for a medical doctor, just like you would a new car.  Each one will have positives and negatives.  Each one will have specialties and areas of lacking knowledge.  Each one will focus on what they know.  They are human.  What makes a good doctor, is one who is willing to listen to their patients concerns and validate what they are saying.  A good doctor is open to learning what the patient suggests.  I find it baffling to think anyone could navigate the health system without a medical degree.  If a patient does not know what to question and when, they dont know when there may be a deeper concern to discuss.  The system is quite broken.  A patient must advocate for themselves.  Research.  Seek many opinions.  Trust your gut.  You know your body better than anyone.

What I do know, is that the stigma exists.  The stigma keeps young women, especially, from getting proper medical care.  My story, is mine, but it is one of many.  Many women fighting to be heard over the noise of the stigma.

 

Advertisements

2 thoughts on “The Stigma

  1. Wow… Melissa, you may have provided a definition in the past, but what is POTS? Thank you for your transparency and tenacity…

    Like

    • Postural Orthostatic Tachycardia Syndrome. To sum it up, the heart rate increases by 30 points or more with position change like going from sitting to standing.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s