I am a “returning new Upper.” Two years ago, I was a healthy 17-year-old Lower, but in January 2012, I found myself at Isham Health Center with severe lower back pain that I later learned was the result of an unhealed surgical procedure 14 years before. After an emergency surgery at the Boston Children’s Hospital, I was supposedly “fixed” and returned to school. At the time, I had no idea I would not be a full-time student here again until this fall.
As soon I returned to school, my parents, who are both physicians, and the Isham staff immediately realized that something was still very wrong. Long lists of questions regarding my psychological well-being and stress level punctuated subsequent visits to the emergency room, and doctors repeatedly ignored my lingering symptoms, telling my parents that I was out of shape and exaggerating my symptoms.
My parents and I were totally out of our league. We did not know what questions to ask, which symptoms to worry about or who to approach for help. The medical professionals charged with my care completely failed to educate and guide us through my various procedures or check-up on my emotional and physical well-being each step of the way. I was kept in the dark about my own health. What I did learn, however, was that when it comes to dealing with medical professionals, I was the best, and sometimes the only, advocate I had.
After leaving school again in April 2012, my parents found a specialist who could treat the new problems, which I found out were the results of a cerebrospinal fluid leak, a common surgical complication. I returned to school for the second time in September 2012, but the symptoms reappeared. My neurosurgeon in Boston refused to take me seriously, and suggested I see a counselor.
In November 2012, I had my third surgery in ten months, again to repair the fluid leak. Soon afterwards, however, it became apparent that I had traded one set of medical problems for another. My body attempted to heal itself after surgury, leaving me with too much spinal fluid that caused high intra-cranial pressure. Nobody thought to tell me before the procedure about this potential side-effect, which continues to affect my recovery even now, almost one year later.
Obtaining the best healthcare is difficult. Often, there is no single solution to a patient’s problems. This may seem like a good thing, but when each potentially “correct” medical choice comes with its own set of ramifications, patients need proper guidance in selecting the best option to suit their present and future needs.
What we must now acknowledge is that the healthcare system is far from perfect. Often, doctors and nurses do not or cannot take the time to sit down with a patient and explain his or her options, the intricacies of potential procedures and the state of the patient’s general well-being. We, as patients, simply cannot rely on medical professionals to communicate adequately with us. Instead, we must inform ourselves and initiate dialogue.
An educated, focused patient who can effectively advocate for him or herself can much improve the care that he or she receives. We all need to be active members of our own healthcare team. Unfortunately, it is the patients who currently bear the responsibility of making sure that they understand their condition, as well as the proposed treatment plan and its potential consequences. The silver lining to my story is that I have learned to be a better advocate for myself. I have learned that patients have an unprecedented opportunity to revolutionize the care they receive simply by raising their voices.
Check out Carrie’s Website: http://www.getheardadvocates.org/
