be your own advocate

2
Imagine your body begins to turn against you for undetermined reasons. You become sicker, unable to work or even participate in activities you once enjoyed, and every time you are seen by a doctor, you are met with confusion, uncertainty, and even scorn. Answers elude both you and those tasked with healing you. After an arduous journey spanning weeks, months or even years, a diagnosis is given and you feel that knot of fear loosen in your chest. Yet as the months pass and treatment is received, you are not getting better. Perhaps you’re even getting worse. The diagnosis was wrong, the doctors are stumped, and you are alone. It might be strange to think that in a society with a plethora of technological and scientific advancements, new and cuttingedge treatments in the world of healthcare, such a thing is even possible. How can a diagnosis be wrong? Even worse, how can a diagnosis remain unknown? It is, unfortunately, quite possible. Science is presided over by humans, and humans make mistakes. We cannot expect a medical professional to be correct every time, but we certainly hope that those in the healthcare profession will at least listen to us when something is wrong. It is of utmost importance that everyone be ready and able to be their own advocate when it comes to their health. My mother has been battling a few different chronic illnesses the past few years, and has been on the receiving end of multiple erroneous diagnoses. She was initially diagnosed with multiple sclerosis when she presented with nerve pain and loss of sensation in her arms, hands, and fingers. Three years later, we discovered that this pain (which persisted, since she received treatment for MS and not the condition she truly had) was actually being caused by ruptured discs in her neck. At least three doctors did not notice this, but she was lucky enough to find a neurosurgeon who called it to her attention, and was able to operate and repair the damage. One year ago, she was also struggling with symptoms that were far more lifethreatening. As a nurse, she’s more informed than most people would be, and based on what was happening to her, she suspected that her adrenal glands might be shutting down. Given that such a condition could easily lead to death, she appealed to her primary doctor, wanting to be seen by an endocrinologist as quickly as possible. Despite informing the consulting doctor of my mother’s symptoms, she was told they could not fit her in for another month. She did not have a month left. I cannot fathom why there wasn’t more done to assist her, other than to say that her primary care doctor did not seem to believe her adrenals were shutting down at all. We are lucky that she has health insurance which allows her to selfrefer, as she looked up an alternate endocrinologist in the area, one who could see her immediately. This doctor took her seriously, admitted her to the hospital, and ran the test to determine whether or not her adrenals were producing cortisol. At the time she was admitted to the hospital, her adrenals had nearly shut down completely. She had to actively fight to be heard and seen, with my stepfather and I assisting to the best of our ability.

Upload: kristin-sutliff

Post on 13-Apr-2017

64 views

Category:

Documents


3 download

TRANSCRIPT

Page 1: Be Your Own Advocate

Imagine your body begins to turn against you for undetermined reasons. You become sicker, unable to work or even participate in activities you once enjoyed, and every time you are seen by a doctor, you are met with confusion, uncertainty, and even scorn. Answers elude both you and those tasked with healing you. After an arduous journey spanning weeks, months or even years, a diagnosis is given and you feel that knot of fear loosen in your chest. Yet as the months pass and treatment is received, you are not getting better. Perhaps you’re even getting worse. The diagnosis was wrong, the doctors are stumped, and you are alone. It might be strange to think that in a society with a plethora of technological and scientific advancements, new and cutting­edge treatments in the world of healthcare, such a thing is even possible. How can a diagnosis be wrong? Even worse, how can a diagnosis remain unknown? It is, unfortunately, quite possible. Science is presided over by humans, and humans make mistakes. We cannot expect a medical professional to be correct every time, but we certainly hope that those in the healthcare profession will at least listen to us when something is wrong. It is of utmost importance that everyone be ready and able to be their own advocate when it comes to their health. My mother has been battling a few different chronic illnesses the past few years, and has been on the receiving end of multiple erroneous diagnoses. She was initially diagnosed with multiple sclerosis when she presented with nerve pain and loss of sensation in her arms, hands, and fingers. Three years later, we discovered that this pain (which persisted, since she received treatment for MS and not the condition she truly had) was actually being caused by ruptured discs in her neck. At least three doctors did not notice this, but she was lucky enough to find a neurosurgeon who called it to her attention, and was able to operate and repair the damage. One year ago, she was also struggling with symptoms that were far more life­threatening. As a nurse, she’s more informed than most people would be, and based on what was happening to her, she suspected that her adrenal glands might be shutting down. Given that such a condition could easily lead to death, she appealed to her primary doctor, wanting to be seen by an endocrinologist as quickly as possible. Despite informing the consulting doctor of my mother’s symptoms, she was told they could not fit her in for another month. She did not have a month left. I cannot fathom why there wasn’t more done to assist her, other than to say that her primary care doctor did not seem to believe her adrenals were shutting down at all. We are lucky that she has health insurance which allows her to self­refer, as she looked up an alternate endocrinologist in the area, one who could see her immediately. This doctor took her seriously, admitted her to the hospital, and ran the test to determine whether or not her adrenals were producing cortisol. At the time she was admitted to the hospital, her adrenals had nearly shut down completely. She had to actively fight to be heard and seen, with my step­father and I assisting to the best of our ability.

Page 2: Be Your Own Advocate

The journey since then has been fraught with unreliable medical care, yet I do want to mention that in the five years my mother has been fighting to regain her health, we have also met with wonderful professionals who truly have done their best to help my mother. It is sometimes nearly impossible to diagnose without a certain set of symptoms lining up perfectly, and I understand that. But it is absolutely necessary to not stop when you are told something that does not seem to be right. My mother knew something was wrong, and with the last reserves of her strength, she fought to find a doctor who would listen. There is so much good science out there to help us now, but there is sometimes an alarming gap between us and the things we need to save us. I have seen far too many people take the words of a doctor at face value, consenting to unnecessary tests or treatments they may be uneasy about, and yet they do not voice their concerns. Luckily, the Internet makes it easier these days to conduct our own research, although there is certainly an inherent danger in scrolling through a few pages of Google results and presuming to know better than those trained in handling disease and health. I would not condone checking WebMD or various health forums and letting those sites alone inform your decisions, but I strongly urge everyone to utilize sites like that in conjunction with asking questions of your doctors, or friends you may know in the medical profession. It is incumbent upon us to research what we’re told, and sometimes it will serve to simply give you peace of mind, whereas in other instances, it may save your life. There is a wealth of information to be had; second and even third opinions when it comes to medical diagnoses are vital. You have the right to seek out other opinions. I know for those of us who are not nurses or doctors, it may seem like we have few alternatives, but you do. Forums and social media outlets can be useful when you are hoping to find others who have struggled with something similar, and there is often a chance they can refer you to a doctor who can help. The important thing is to not allow yourself to be bullied or talked out of something if you initially lack the knowledge to help yourself. Listen to your instincts, trust yourself. When something is wrong, there is almost always a voice within begging to be heard. Let it.