After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

The Professional Patient

The Professional Patient

“Professional patient” is either a term that you rally behind or shun, both by the ones ill and by their communities. It is meant to be a sign of respect, of denoting patients with chronic illnesses who are not the new kids on the block; reflecting their experience, savvy at navigating the health care system, and level of intuition in the appointments. Yet, it can also repulse, implying that being a patient is a choice, with perks of status, benefits and rank like all professions include.

The phrase was first implied to me by a loved one several years ago, and I must say I was non-reactive to it. The positives were balanced out by the negatives, as with many having a chronic illnesses, pursuing good health is my primary “job”. Yet, within my closest circle, I encountered an equal number who found the phrase fabulous and applicable, and those who were furious, venting at length about how much they did not like that term. (My favorite line I heard from one rant was, “Right, cause you can put “patient” on your passport as a job”.)

Whichever way you interpret it, for me, both implications are correct.

I define being a “professional patient” as not only being experienced, organized (having printed lists of all medications, allergies, surgeries—not needing to fill in the tiny spaces doctor forms have accounted for), and being completely up to speed on your medical case, (when your last tests were, what results are trending, all experts you have seen, where their reports are in the stack in-front of the specialist you are seeing, etc), but in short being an expert on the expert.

What do I mean by that? Whenever I meet with a doctor, as a new patient, I have a clear goal in mind of what my take away is, new and relevant information I think they need to be aware of, and interests I want to make sure they know about. Because, as I have learned, my job is not only to be an expert about my case, but also to be an expert on their expertise, with a clear strategy of how to present my findings in a way that is relevant to them.

Over board? I only wish it were so.

Around the tenth year of my illness, I noticed a pattern occurring when I was meeting with new specialist, my generic bullet point timeline preprinted necessitating an oral accompaniment. About half way through they all said, “yes, but how is this relevant to me, my speciality?” I really wanted to scream, “if I knew what part of my illness solely affected your specialty, then I wouldn’t be a mystery and I certainly wouldn’t need you!” But I didn’t. Instead, I would say, “it’s all inter-related, and I need your help discerning that.”

Ah, I was such a novice then. 

Now, I have so many copies of my yearly updated timeline both by speciality and length (detailed and very brief). My job is presenting the relevant information and data in a way that the doctor can grasp. In the era of ever shorter appointments where time costs more and more money, and my case grows more complicated, not less, it is essential that I do this effectively. I don’t think you ever get confident in your ability to do this, (especially when you feel your life is on the line every time, with the possibility that this doctor may be the one to help you), but I can say that I have improved over the years, like any good “professional”.

On the other hand, just writing this makes my blood boil. Doctors are supposed to be the ones you go to saying, “I don’t feel well”, and they fix you. They’re the ones that are supposed to listen, sift out relevant nuggets, order the tests, and then say, “You have this!”. Yet, the reality is that in complex cases, this rarely happens. It’s now up to the patient to “pitch” the case just right, with all the relevant data, and see if you can find someone to help you.

Yes, even with my working theory diagnosis, I am still doing this! 

Perhaps I need a new goal: find a NEW profession. I am becoming over qualified...

Lost Records

Lost Records