I recently read an article entitled, “No Fatties”: When Health Care Hurts by Carey Purcell which touched on the biases in care that fat people can face when seeking medical care. As I read the various stories of those whose pain had been ignored, sloughed off as the result of their weight, and sudden, unexplained weight gain being dismissed as nothing more than the result of eating to many burgers, I could not help but recall my own experiences with the medical community that have left me less than thrilled whenever it is time to visit the doctor.
The flurry of emotions raised by this article run strong and deep through my soul like a quiet river that with the slightest rain rises into a ragging torrent. Most days I quietly forget the pain, as I focus my mind upon the daily struggle to keep meaning and purpose in my life along with the battle that comes with living in chronic pain. But there are days that wound rises to the surface and the tears threaten to come rolling down. In order to silence the pin pricks of irritation at being treated as somewhat less than human, I have done the unthinkable in that I have to a great degree shut down the person I once was. I have allowed the battle to alter the course of my life and erase the dream I once cherished.
The change began with simple steps that were almost imperceptible. Little moves such as changing the channel whenever a medical clip or episode of a favorite show came to close to my own experience and threatened to touch a chord I would rather remained silent. Soon I was no longer watching once loved shows like Emergency, Mystery Diagnosis, Quincy ME, programs that had inspired me to hope that one day I might help the suffering and sick too, because to me they had become nothing more than idle tales. Ultimately it progressed to closing the books and shutting down my hopes and dreams of becoming a doctor or at a nurse practitioner.
At first I blamed my shift in direction solely upon my chronic health issues. Dismissing the sting in my voice as nothing more than discouragement at being too ill to fight what was clearly a losing battle. And while it is true that they played a vital role by crushing my strength at the most vital of moments and keeping me down until it was impossible to continue, it was not the final death blow.
The death blow had come in a series of wacks and bangs that had occurred over months and years. Starting in my teens when I would go to the doctor with horrible abdominal cramps that brought me to tears and which was instantly and repeatedly dismissed as nothing more than depression. You’re an overweight, depressed teenager was the ready excuse to dismiss the sharp knife that cut through my abdomen each time I ate one slice of medium sized pizza with the undiminished intensity for 3 and 1/2 weeks before it slowly subsided for the next 3 1/2 tear ridden weeks.
During those critical teenage years no doctor was able to look past the slowly creeping scale and question what part my thinning hair, the facial hair that was sprouting in small unattractive clumps, or the dime sized blotches that set of a wave of pain when touched, might play in my complaints of increasing fatigue and pain. To them I was nothing more than a whimpering hypochondriac, or an overstuffed bundle of depression at best, and their opinion remained unaltered even when I reached the point that I became so weak that I could hardly walk and it took 2 hours to gather the energy to grab the glass of water that sat only a foot away and quench my desperate thirst. Weak and discouraged I was wanted to avoid all contact with the doctors who looked into my listless eyes and declared it was all in my head. That I was imagining things and seeking to control my parents by trying to gain sympathy.
If my anxiety was not already heightened enough by my declining health and my desire to see a member of the medical community had not fallen low enough, it was made far worse when I started to experience strange bouts of massive weight change where I could gain or losing 40-70 pound within six months. I soon learned when to expect the scale to climb or fall based upon the way I ate. When my appetite increased with dramatic force because it felt like my metabolism thought it was a rocket launching into space, I knew that swift weight loss was around the corner. But if my abdomen became painful and full, reducing my appetite to that of a hibernating slough, I cringed in fear because the scale was sure to speedily soar.
Yet heartbreaking as it was to have my complaints waved away as if my fatness were a magic wand that automatically explained every creak of my underused bones, my eyes still glistened dreamily as I imagined the day that I would hear myself called doctor. And progressively weak and painful as I was becoming I struggled with every ounce of will power I had to meet this overriding goal.
With each new doctor my hopes would rise as I reassured myself that this indifferent and at times borderline hostile attitude was due to a lack of a concrete diagnosis and would vanish as soon as a viable explanation for my symptoms was at last discovered. That once a diagnosis was made the constant scoffing would disperse and I would no longer be forced to endure rude insinuations that I was merely lazy, that I was sticking a fork down my throat when I lost weight, and that (even though I was vegetarian) I was gaining weight because I was eating more burgers and fries than I wanted to admit too.
The problem was that most of the doctors my parents dragged me to in hopes of learning the cause (willingly taking money from their own needs to cover the cost since I had no medical insurance), were content to order the standard test. When the CBC, Chem profile, and TSH came back normal, they proudly declared that nothing was wrong, it was of course all in my head. How would anyone find out what was wrong if they did not look? How would the solution ever be discovered if no one was willing to move past step 1 or 2?
Fortunately there were a few good doctors here and there that we stumped upon. Thanks to their willingness to look past my size and look at the evidence such as fingers that were cold as ice and nail beds that at times turned a shade of blue that a few diagnoses at last began to accumulate into a rather satisfactory pile. It was soon discovered that I suffered from a long list of allergies to various trees, grasses, cats, dust, and a long list of foods that created a startling dent in my diet. That was followed by diagnoses such as migraines, erosive gastritis, malabsorption issues, Raynaud’s disease, iron deficiency anemia, mild sleep apnea, fibromyaliga, CREST syndrome, and even questions that I might not have chronic fatigue syndrome. With all these proofs that something was wrong my complaints would at last be taken seriously.
I remember the elation I felt when the doctor declared that I had fibromyalgia. Though the diagnosis meant that I would probably spend the rest of my life enduring chronic pain, there was joy in my heart because at last the misery I daily endured was validated and wy the medical community would no longer brush my suffering aside as the product of a depressed overweight mind. But my joy was short lived as I soon realized that for many my diagnosis meant nothing because in the eyes of a large portion of the medical community fibromyagia was not a real disease as the vast majority were convinced that it did not exists and was nothing more than a code word for lazy hypochondriac whose overactive imagination led them to believe that they were in far more pain than what they really were. Deflated I finally began to realize that in the eyes of some, I was doomed to remain the depressed hypochondriac who would only find relief when she got off the sofa and lost some weight.
Matters were not helped the treatment I saw others receive such as the time my Father became very ill and was taken to the emergency room. He had been vomiting, experiencing extreme fatigue, severe headaches, increase thirst, dizziness, chest discomfort, and was having trouble walking, but was sent home by the triage nurse who decided his case did not rise to a level that required ER care. Furious at the lack of care, and secretly terrified that my Father was on the verge of death, my Mother drove him 40 miles to an urgent care who quickly declared that he needed to be in the hospital. Because of insurance she took him back to the original hospital where the same triage nurse again attempted to send him home. She only begrudgingly took him in after learning that he had been to an urgent care and that the doctor had stated that he needed to go to the hospital.
When they checked his glucose it was over 500. Did that alarm the doctors? Were they worried about that startling high sugar? No. Their first instinct was to see some extra weight and say, “Oh you must have eaten a big meal and that raised your sugar.” I am no expert in glucose levels, but after years of watching my Father test his sugar after meals small and big, I can only imagine what quantity of food or sugar for a healthy person to have a 500 glucose. It was only when my Father explained that he had not eaten for nearly a day and a half that they began to realize that they had a problem. And it was not until after giving him insulin and getting the glucose down to a safer level and then watching it spike after one small bowl of rice and beans that they fully understood that they were dealing with an undiagnosed, out of control diabetic, who had reached the point that he was experiencing a potentially deadly episode of diabetic Ketoacidosis.
Like months of sun shielding rain, these little dings and dongs have eroded my confidence in how I will be treated by the medical community. When I go to the doctor I no longer expect my concerns to be taken seriously. When asked how I am feeling I will grunt out a simple fine even when I am slumping over from pain, because I am sure that anything more will cause me to be brushed off as tiring nuisance. Even to seek care for something as simple and straightforward as a sinuses infection brings forth a wave of acrid cynicism from my previously trusting heart as I quietly turn to my Father and declare “Why bother, they will only say it is in my head.” as I role my eyes in frustration. Now it is a pleasant surprise, and not the expected norm, to have a doctor turn to me and confirm that something is indeed wrong. I am almost visibly taken aback when the doctor recognizes that I am severely nauseated, that my heart is palpating like it were a runaway train, or even that I have a serious infection brewing.
It is a sad indictment of the profession that I once admired so greatly that I now expect so little compassion, so little effort to search out the true cause by those whose job it is to help the sick and the suffering. The constant belittling of my complaints, well meaning as some of them may have been, eroded my trust in the medical system and finished off my dream of becoming a doctor.
But my case is neither special or unique. Like any field populated with humans, it is fraught with the frailties and limitations of mankind. Despite its great importance and our fervent desire to believe that the men and women behind the sparkling white lab coats are free of the same emotions, likes, dislikes, and prejudices that rule our hearts, ultimately medical personal are like any other human being.
For some weight is an overwhelming factor that consciously or unconsciously alters and controls their interaction. For others it is self-destructive behaviors such as smoking, drinking, gambling, or consuming drugs. Right or wrong, in their minds anyone who engages in these behaviors is incapable of making proper decisions or lacking in control and therefore must be dominated into obedience or is pushed aside because they assume that any attempt to improve the patients health will be a waste of time.
To others it is an uncontrollable factor such as age. As a teen and in my early 20s I was told by at least one doctor and several nurses that I was too young to be so sick. On the opposite extreme I have watched older relatives have their chills, fatigue, memory issues, and daily pain brushed off as the misfortunes of aging when in reality they had anemia and thyroid issues. Once recognized and treatment was at last begun, their symptoms dramatically improved.
Worst yet is the prejudice that is often shown to one of the most vulnerable categories, those who are mentally ill. I have heard quite a few sad accounts of how well meaning medical personal were confident that the complaints of their patient stemmed from their mental health issues downplayed their patients pain thereby delaying help. Sometimes after months of needless suffering it was discovered that several bones were broken. And for some the discovery came too late as the awful truth that the misery was real and due to cancer came after it had spread throughout the body, or that it was the heart after they keeled over and died from a heartache confirmed the accuracy of their discomfort. How many troubled souls are allowed to languish in pain for months because their moans and groans of pain are thought to be nothing more than a product of their mental state? With so many alone and on the streets, and only a fortunate handful with families to fight for them, how many are even now suffering from undiagnosed heart problems, cancer, autoimmune disease, and more because they have no voice of compassion to come to their defense.
Painful as these case are, I cannot brush the medical field as inhuman monsters ruled by selfish prejudice. On the contrary, many enter that field brimming over with a desire to help the sick and the suffering, and earnestly believe that the words which seem so cruel and cutting, are the very thing that will improve their patient’s life.
Unfortunately, like any occupation that is composed of human beings, medicine is fraught with thoughtless communications, snap judgements, and ultimately a host of prejudices that when left unguarded has the ability to mar and destroy the very ones it intended to build up. What makes their field so unique is that unlike a plumber whose refusal to work on a project might sting or cost a few hundred dollars of damage, or even that of a politician whose desire to pass a biased law might never see the light of day, even the smallest droplet of prejudice knowing or unknowing, can and does impact the course of hundreds and even thousands of lives.