After 13 years of dealing with a chronic illnesses, what surprises me most is that I'm still surprised at how the healthcare system manages (or doesn't manage) patients. With a year of medical school stuffed into my brain and a summer filled with strange, new symptoms, I find myself marveling over how our society deals with someone with a chronic disease.
First off, I have so much respect for people who enter healthcare for the right reasons and truly devote themselves to helping others. If you are one of those people, please know you have my deepest gratitude; you make more of a difference than you can possibly know.
For those whose job is purely a job, I only ask for more patience and perhaps a touch of empathy. For some employees, dealing with patients is an 8-5 weekday job with vacation and holidays.
I don't receive a break from my disease. It is with me 24/7 regardless of my plans or vacations. My illness does not slow down when I have an exam coming up nor does it clock out when I travel. When I call, even if my issues deal more with quality of life, I really do need help. I am not trying to make your day harder. When I become frustrated on the phone, do not think that I enjoy the conversation any more than you do.
We say that our system tries to focus more on the needs of the patient, but this entirely depends on the clinic and individual healthcare professional. I know people may scoff and wonder what the big deal is. However, when trying to stretch every dollar and having an insurance that will only cover one specialist appointment each year, that one appointment means more than you can imagine. If you use your one appointment on a physician who has different beliefs on symptoms a patient should deal with, then that's it. No do-overs and you have another year of very uncomfortable and painful symptoms until you can try out another physician and hope that this year will not also be a waste.
As a patient, I find how different physicians code appointments for billing fascinating. I know doctors who bill for everything regardless of what the insurance will cover. Other physicians learn what insurances will cover and if it is something small, will not write down a small portion of the exam in order to save their patients some money. When I keep calling about symptoms and seeing if I can put off an appointment, I'm not trying to make your life difficult. I don't have endless income to afford several appointments and tests. Treating me as though I'm looking for free healthcare only makes me feel guilty about being sick.
What astounds me most during this time, is that physicians still exist who believe they have the right to tell patients to just deal with symptoms. After my fortune of dealing with several amazing healthcare professionals, I cannot stand a doctor who thinks they know more about my disease, my life, and how those two interact. I lived with this illness and my symptoms for much longer than any professional has learned about the disease in general, with much less time to learn about my particular illness.
In this past year, I learned that much more reform is necessary for patients to truly receive the care that we deserve as human beings. We are not cases from a textbook. We are not idiotic people who know nothing about our disease. We are more than a job.