Personal Writings

Professional Patient

By February 2, 2015 6 Comments

“So, what are you up to these days?”

The question comes packaged in different wordings, with varying degrees of interest. Sometimes it is asked outright by older acquaintances at social gatherings. Sometimes it’s asked by a friend, looking to catch up. Sometimes the question is not actually spoken. It simply hangs there, waiting to be addressed, as chit chat over the chilly weather trails off into awkwardness.

We like to know each other’s occupation. It gives us some firm knowledge about the other person and a potential way to relate to them. For example, a lawyer clearly went to law school – maybe they know our second cousin once removed! A journalist must be well informed on current events and might hold an exciting debate with us. A doctor can give us free medical advice on that weird rash we have, because it’s totally acceptable to ask them about it at a party. A musician can talk about their favourite composers and even provide the entertainment – again, for free, because they can!

Sometimes, relating to each other on occupation alone can be damaging. Sometimes, someone might want to have some time off work to get to be themselves. We tend to associate a fair bit with specific professions, and that’s not at all fair to the individual we are talking to. A lawyer doesn’t necessarily have tough skin. A used car salesperson isn’t necessarily sleazy.

But it’s better than nothing. It’s a way to start a conversation, to get to know a bit about the other person – at least what they spend a fair amount of their time doing. And as long as it’s not followed up by requests or assumptions, it’s a pretty harmless question.

Except for when it isn’t.

Currently, my peers are in a state of flux. Just graduating, unsure of what they want to do, unsure of what their options are. And questioning what they are up to and what their plans are should be officially banned from public discourse.

It’s simply not fair to ask. It provides all sorts of pressure, and the assumption that they do, in fact, have a plan. Or that they should. A rare occurrence for someone in their early 20s.

But at least most of my peers can say that they’re a student. Or working as a barista while they look for something else. Or travelling. Or applying to graduate programs.

When someone asks me what I’m up to or what my plans are, I have absolutely no idea what to say.

I generally admit upfront that my health is not so good, but I’m quick to emphasize the fact that I’m tutoring a few students, and that I’m writing and working on some new projects. I try to give the questioner something to latch on to – something that can be seen as productive and can qualify under the category of school/work/parenting, otherwise known as an occupation.

And I do tutor. I am writing. I have been working on projects.

But they aren’t really how I spend the majority of my time. If I’m to be perfectly honest, they feel like extra-curricular activities. More than a hobby, but not the main course.

No, I spend my time another way. I have another position. An all consuming job that is the main source of my stress, that eats up most of my time, and that I have become remarkably good at.

I think it’s about time I admit it.

I am a professional patient.

As a professional patient, I have a very flexible schedule. I have to. I can be called in for tests or appointments with very little notice, and must be able to travel back and forth to a variety of locations at the ring of my phone.

I spend a fair amount of time doing administrative work, although admittedly, when things get overwhelming I do delegate (thanks mom). Calling to book and confirm appointments, faxing medical notes to various physicians, compiling my test results into a binder filled with colour-coded tabs and updating my medical history requires an immense attention to detail.

Research is also an important skill in the Professional Patient field. Whether it’s looking up medical professionals (from specialists to therapists), crafting the perfect exercise and dietary regimen, or becoming informed about a diagnosis and it’s various complications, it is important to become comfortable with medical terminology and be able to sort through chaos online. It is also a frequent job requirement to gather copious notes in the form of a pain, food, sleep, exercise, heart rate, temperature, blood sugar and/or blood pressure journal, chronicling fluctuations at regular intervals throughout the day in order to ascertain a pattern.

This job is best suited for someone open to a bit of experimentation in the form of mind and body altering substances. It can be uncertain and stressful at times, and is guaranteed to put a strain on your relationships.

It is best filled by someone comfortable enough with their bodies to disrobe in front of complete strangers and be poked and prodded and asked to touch their fingers to their nose repeatedly, followed by squatting. A fine line must be toed, however, as they must also be sufficiently self-conscious to avoid eye contact when the physician is getting up close and personal.

This fine line also crops up in the balance of assertion and humility. Self-advocacy is extremely important, however arrogance can be unappreciated by someone who has gone through rather a lot of training to gain the privilege of managing your healthcare.

Communication under pressure is an important asset. The requirements of the job can occasionally demand answers to rapid fire questions or a condensed, but detail rich history of the past several years. Organization and preparation are the determinants of success in these cases.

As one progresses through the ranks of this occupation, an ability to travel can be a highly valued asset. Flying across the continent to meet a specialist can really advance your career.

This job is so all-consuming that it really is more of a lifestyle. It’s filled with uncertainty, is personal and precarious, and there is no orientation or guidebook to help you out. Some people might devalue it, and tell you that you should go and get a ‘real’ job, but you will learn to brush this off with class as you develop your self-advocacy skills.

Unfortunately, this job is unpaid. In fact, it tends to be quite the financial drain. Some people are required to work second and even third jobs to support themselves while others rely on family or the government.

It can offer some perks, however, depending on your rank and division. Free parking and skipping the line for roller coasters are among the benefits that you may be eligible for, as long as you can independently afford a car or a trip to Disneyland. It also gives you the wonderful gift of giving as you know that you are providing educational experience to future physicians as they take turns examining your sensitive eyes with a bright light and discussing your body with each other using code words while you sit there in a flimsy and extremely revealing paper gown.

This is what I do. I am full-time professional patient. It’s not for everyone, and certainly not what I aspired to be as a child.

But as a wise and creepy old man once said ‘the job chooses the wizard, Harry’. Or something along those lines.

So the next time someone asks me what I’m up to these days, I will be ready with my answer. Because I work way too hard not to get to whine and brag and do all those things people with jobs do.

I am a professional patient.

And I’m damn good at it.

So, what do you do? What are your plans?

What are you up to these days?

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Join the discussion 6 Comments

  • abodyofhope says:

    I am so with you… The one job that takes money instead of putting one into your account. You sound like a very organized patient though. The kind that might wear a suit to your appts. 😉

    • Haha, I certainly never feel organized ;). But I have to admit, I do dress for my appointments in an awful and funny way. I always pick my outfit the night before, trying to find a balance between ‘I swear, I’m trying!’ and ‘I’m really, really sick – you should take me seriously!’.

      • Which just leaves the ever popular question of whether or not to do the makeup, or leave those physical signs of stress visible on your face. I hate that one. I try to just not think about it and act like it’s a normal day, but so much rides on those appointments that I usually have to strike a balance too, unless I really am so sick that I can’t shower/put on clothes/brush my hair or teeth/apply make up.
        I agree with Mary that you sound so organized and it reminded me of something I try to keep in the back of my mind now, which is that most of us with chronic illnesses, if we had the chance, were chronic workaholics or extremely intelligent or creative self-starters or all of the above before we were ill, and that still exists in all of us in the journey towards healing and acceptance. It’s what keeps us from shutting down completely, and it’s what keeps us working so hard every day to conquer our symptoms and get better from the inside out as well.
        May I link to this post in the one I am about to finish? Just vaguely it’s about the deep level of self-confidence that it takes to have the attitude that you are portraying so perfectly in this post. The confidence to want better and never settle no matter how society sees us, and to continue to be vulnerable and open even when it does not work out how you had hoped.

        • I question the makeup too! It’s so ridiculous that it feels like we have to put so much effort into the visual impression we give off, but it’s true – we wait so long for an appointment and need it to go well. I would be honoured for you to link to this, I’m looking forwards to reading your post, it sounds brilliant. I can’t tell you how much I appreciate you reading and commenting, thank you so much. Sending lots of spoons your way!

      • abodyofhope says:

        Ha ha! I so get that 🙂

  • rebarie says:

    I am privileged, Ophira, to read and learn from you. You write lyrically, a skill not every writer acquires, and you are thus, quite literally, a lyricist. Most people would not, cannot, conceive of being a “professional patient”. That you can contain your experience in this phrase is, I think, remarkable and perceptive. You have permitted me in the past to fascinate you via my quirky comments; I prevail upon your patience to do so again.

    Genre classifies writers and singers, whereas other artists are classified by the medium they use. Some 2D artists prefer ink, others prefer oils;some 3D artists work in wood, or stone; and so on. Genre, I think, defines experience; medium defines expression.

    Singers are actors — and every actor is a “professional patient”. The insight an actor obtains through counselling, psychotherapy, or analysis is essential to how he (she) interprets the role. Elains Stritch was, perhaps,Stephen Sondheim’s single greatest interpreter. Her’s was a life of constant personal turmoil. Could she interpret Sondheim without her tumultous experience to guide her?

    So, I think, you are not a “professional patient” — you are an actress, a singer, and a writer. And I permit you to so inform anyone who asks what you do.

    Kindest regards,

    Reb Arie

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