As I sit in an uncomfortable waiting room chair I look down at my new patient paper work. Pages and pages of information to fill out that seem to be identical to every other physicians office on the planet. These fill in the blanks have become so second nature to me I barley have to think as I jot down the information. As I quickly fill in the first blanks: full name, age, marital status, etc. I come to a screeching halt. One blank somehow always seems so much heavier than the rest: Occupation.
This word seems to sting with a sense of diminished self worth ever since losing my career to illness last year. I went from a prospering Montessori Educator, to a jobless homebody in one tragic month. While this inability to work was in no way my fault, disease had ripped my functioning body away leaving me ill-equip to preform any job function; I felt worthless, like my pride had been completely stripped. Instead of proudly filling in the occupation blank with the word "teacher," I reluctantly wrote "disabled." How did I go from a successful professional, to this fragile young woman relying on state disability for income? I had always put such weight on the importance of career that I now felt undignified, like I was making no essential contribution to society -- I was a useless vessel.
One day I found myself out with a old acquaintance. We had begun to talk about our lives, and she asked me the dreaded question, "So what are you doing for work these days? Are you still teaching?" I paused, knowing the feeling I would get in my gut as I answered her innocent query. "No, I actually am unable to work due to my illness," I replied somberly. She paused for a moment and answered, "I wish I didn't have a job. Sitting at home, sleeping whenever you want, and having no schedule, that sounds like the life!" While her comment was legitimately not meant to be disrespectful, I took a little offense. What came out of my mouth next honestly surprised even me; I curtly replied, "I am a Professional Patient, and that is a full time job."
Suddenly a light bulb seemed to click in my mind. Did I in fact still have a career? A job to which I dedicate all my time and effort? Did I have an occupation after all? I said it out-loud again, feeling my confidence grow in that small phrase. "I am a Professional Patientt." I thought about what I had said, about how true this statement rang. I played in my mind a typical day in my life; waking up to an alarm for an early morning appointment, quickly getting my medications, records, supplies, and life sustaining devices in order to leave the house. Slowly inching along in traffic to see a provider I didn't necessarily like, just to be told I needed to see yet another provider. Head off to the pharmacy after hitting the lab for blood analysis, wait to get my prescription filled, then sit in traffic again. Upon returning home I have faxes to send to physicians, phone calls to make to my insurance company, records to file, and appointments to make with new care providers. I have to do research on the new treatment my doctors want to to begin the next month, and find a company willing to sponsor me as my insurance more than likely wont approve its use since it is considered "off label."
Almost every day of the week continues like this, even weekends. While I may have plans for Saturday my 'job' may have other plans. I could find myself busy at 'work' on a cold Emergency Department bed fighting for my life after a nearly fatal infection, or dangerous medication side effect. Then there are the many times I have been 'called in' during a good friends wedding, a family vacation, or a personal event I have anticipated for months. While comparing my schedule to that of a traditionally employed individual I realized that I most certainly was participating in a sort of profession. I was not a useless individual solely because I couldn't work a conventional vocation. What I originally considered was having no occupation, was actually an occupational change. I went from a full time teacher, to a full time patient, busy with the management of my health care and well being. This position was one of great value and importance to not only myself, but to the people who surrounded me -- I was contributing to society after all.
Yes, being a "Professional Patient" truly is a job, and a tough one at that! You work long hours for a boss who cares nothing for your personal life, who forces you to go to the same meetings over and over again, who schedules prior commitments without your knowledge, and worst of all calls you in on holidays, weekends, and even your vacation time. You often are made to work horrible hours; late nights, early mornings, plus constant overtime. Illness is a boss that shows no mercy -- and it doesn't even bother to pay decently. Actually, you are expected to pay out of pocket, spending all your savings on this tasking position you didn't even apply for.
So, while I may not be able to work a traditional nine to five, I absolutely have an occupation; one that requires much time, effort, precision, and responsibility. When I now sit down in those uncomfortable waiting room chairs to fill out the dreaded new patient paper work I no longer have a lump in my throat. When I reach the occupation blank I can write with satisfaction that I am a "Professional Patient."
Chanel White is a young woman battling Systemic Scleroderma, among many other conditions. To follow her health journey you can visit her blog: A Day In The life Of The Tube Fed Wife