“First, do no harm.” It is a line commonly associated with the medical field. Like many others, when I hear the phrase my first thought is to avoid physical harm. It is normal to assume that physical harm is the only type of harm that could be caused by a medical professional, and for many years that is the interpretation I believed as well.
In June of 2014, my 16-year-old brother went to sleep like normal. The next morning we could not wake him. The doctor could find nothing physically wrong, other than the obvious not being fully conscious. This went on for two weeks during which he saw countless doctors, all of which found nothing wrong. He eventually was told he must have some virus and to just rest. Sure enough, one day he just woke up and was fine. We were confused but happy he was awake and acting normal again and so we put the incident behind us.
Then, in January 2015 my brother would not wake up again. This time he was rushed to the ER and was tested for a range of potential conditions each more terrifying than the last. Again everything came back negative and around 2 weeks later he woke up and felt fine. So began our new normal. Eventually, we came to a diagnosis: Kleine-Levin Syndrome or KLS. KLS is an extremely rare neurological disorder. It is sometimes referred to in the media as “Sleeping Beauty Sickness” in reference to the long periods of sleep that characterizes the disorder. There is no cure and very little is understood about the disease as it is extremely rare, less than 200 known cases worldwide.
When someone close to you has been affected by a rare disease it feels like you are not only fighting the disease, but also fighting society. Doctors only see my brother during his appointments. What they don’t see is how those 1-2 hours can affect my brother for weeks or months. The harm caused by medical professionals acting without compassion or without thinking can hurt longer than any physical cut they could have made. One neurologist told my brother he would never go to college. To a bright 16-year-old taking honors and AP classes, this was a devastating blow. My brother is now 18 and is still second guessing his ability to go to college even though there is no doubt that he will succeed at whatever college he decides on. He has faced family, friends, and medical professionals telling him to just “stop being lazy” and “just get out of bed.” As his older sister, I want to scream at all of those ignorant people. I wish they could see him the first day of an episode, tears streaming down his face, because he is so upset that this is happening again, but cannot wake himself up enough to even look at us let alone say anything. If you could see this, you would know that this is not laziness, this is not something he can control though he desperately wishes he could.
We have also had many positive interactions with professionals who treated us with compassion. The first person I went to, a professor at school, listened to me when I told her I thought my brother might have KLS. She knew KLS was extremely rare, but rather than dismissing me, she listened and encouraged us to continue with this potential diagnosis. Without her, I don’t know how long it would have taken to get a diagnosis as many medical professionals do not want to consider a rare diagnosis, especially one suggested by parents. My brother’s pediatrician had never heard of KLS, but by his next appointment the doctor had done his research. In the middle of a chaotic time, these interactions are the positive moments we will remember for years to come.
To all of you considering medicine in your future, myself included, I want you to please promise yourself to think before you speak to your patients. Remind yourself that you cannot possibly know your patient’s journey unless you ask. If you know you have a patient with a rare disease, research it. If your patient’s family suspects a rare disease, do not immediately dismiss it. Though rare, these disorders do exist. Find out what is going on before you dismiss a patient as “lazy” or “just being a teenager.” I cannot protect my brother from every ignorant comment that comes from a lack of understanding and compassion. But I can promise myself that I will always treat my future patients with the compassion and understanding that I wish my family received. And I hope that 10 years from now, when you see a patient with a hidden disease, with no visible symptoms, you remember my brother and respond with compassion. You can cause harm without ever touching a patient, but you can also help just as easily.
To all of you considering medicine in your future, myself included, I want you to please promise yourself to think before you speak to your patients. Remind yourself that you cannot possibly know your patient’s journey unless you ask. If you know you have a patient with a rare disease, research it. If your patient’s family suspects a rare disease, do not immediately dismiss it. Though rare, these disorders do exist. Find out what is going on before you dismiss a patient as “lazy” or “just being a teenager.” I cannot protect my brother from every ignorant comment that comes from a lack of understanding and compassion. But I can promise myself that I will always treat my future patients with the compassion and understanding that I wish my family received. And I hope that 10 years from now, when you see a patient with a hidden disease, with no visible symptoms, you remember my brother and respond with compassion. You can cause harm without ever touching a patient, but you can also help just as easily.
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