Sunday, September 20, 2015

When Your Occupation Becomes 'Professional Patient'

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."

11 comments:

  1. Chanel,
    I love everything about this post! Yes, Professional Patient! Or how about "professional student" in life's school of hard knocks? 😉 Either way our bosses suck. I too will have to cut my career (relatively) short due to illness. In my case I probably should have stopped working sooner and focused on taking better care of myself. It is profound that you so quickly gained the perspective to see that taking care of yourself is as important and worthy a profession as anything else. Chanel I also think of your "real" job as an educator because you bring awareness to scleroderma and chronic illness, and you are excellent at that! And to do your job with such selflessness and dignity is awe inspiring. I can't think of anything greater than to be an inspiration to others. True, being a professional patient can be a thankless job with no perks or benefits, but thanks to your experience in that profession, you are able to offer so much to so many. So-THANK YOU!
    Julie

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    1. Aw Julie! Thank you so much for this kind comment! It absolutely made my morning! It is good to know that my suffering can bring about a positive change! :) It honestly makes the daily struggle worth it. Though I was sad to lose my profession as a Montessori teacher, I can definitely see how I am now a Scleroderma teacher. I love that! What a positive outlook. Thank you again Julie!

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  2. I love your answer to this question, I was at the top of my profession for a year at the university, finally reached the top, and then it was gone....I don't think ppl understand how much it is a part of your identity. I hope you only get this post once, google messed up when I tried to send the first one...if you got two , sorry, google is such a pain. Anyway don't forget having fun is also part of your job...and sometimes thats work too, but its worth it...hugs

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    1. Thank you Lisa! :) Profession truly is such a large part of an individuals identity and I think that was what through me the most. Losing that title that I had worked so hard to achieve. The job of professional patient is definitely rewarding in more ways than one though! And yes, having fun is essential... and hard work! Hugs!

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  3. Jl this is been so hard for me lately in this very question of occupation. Thank you for giving me the courage to also claim professional patient as a job. Although I enjoy and embrace my new life taking care of house and taking care of me during the week and then on the weekends I might be able to take care of him or he will have to take care of me. It all depends on how I body decides to react to him being home.

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    1. So glad this post could boost your self assurance! Hugs!

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  4. Don't forget about your second job. Full time inspirer :)

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  5. Don't forget about your second job. Full time inspirer :)

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  6. Chanel, thank you so much for expressing your thoughts so eloquently. I don't have a feeding tube or oxygen tank, but do have Scleroderma, Raynaud's, pulmonary fibrosis, calcinosis, to hit the 'highlights' and have had CABGx2 (double heart bypass); so I have a good understanding of what you mean by 'professional patient.' Seven years ago, exhausted from a very progressive burst of Scleroderma, my rheumatologist told me it was time to go 'OUT' on disability. A 25-year career in non-profit management came to an abrupt halt within three weeks of hearing those words. Now, eight and a half years after being diagnosed, seven years without a job, my daily activities are very similar to yours.

    More than once, someone has said to me with a puzzled tone, "You carry a list of your medications, hospitalizations, conditions, and physicians?" Updating and managing those lists might be the ONLY type of "office work" I do anymore beside paying my bills. Of course, keeping track of appointments helps me maintain my old event planner skills, but now they're doctor appointments, not strategic meetings with high-powered corporate and non-profit managers.

    One element I'd add to your day's description... I am grateful that the non-profit membership organization for which I worked provided long-term disability insurance. I don't know what I would have done if they hadn't. In two months, the disability insurance benefits end. So, in addition to losing the career which I'd received commendations for and which helped keep me youthful and sharp, now I am losing my only income. There are so many ways we can soothe bruised egos from career loss, but earning an income when you're not able to earn an income... I have yet to figure that out.

    I try my best to have an upbeat, 'never-give-up' attitude. My friends would agree that that's who I am. To me, I see a rapidly aging, depressed, frustrated over my less than very neat tiny apartment, unproductive yet busy with a medical to-do list, woman and grandma who can't spoil her grandchildren because I don't know how I'm going to survive financially myself. Somewhere there has to be an answer... somewhere, maybe 'over the rainbow.' When I was first diagnosed with Scleroderma, the rheumatologist told me my life expectancy would probably be five years. At the start of my unemployed-disability 'career' I figured with luck, my money would just about outlive me... hmm, now what?

    Thanks, again, Chanel. You are inspiring. Without your poignant missive, I would not have had put my thoughts into black and white.

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    1. SBB thank you so much for reading my blog! It is lovely to "meet you!" I am so sorry to hear of your troubling financial time, I hope that it will quickly resolve. Scleroderma truly takes everything from us. :( Sending you good vibes and sclero sister hugs!

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