At the time of my first experience with catastrophic health failure, there was a popular t.v. show which featured a gifted but cantankerous diagnostician who got all the most problematic medical crises AND completely solved them within the hour-long drama. The show’s focus was on the physician and his process, and it was seductive to celebrate a genius-healer (comically gruff none-the-less). I imagined that if I were truly sick, I would accept the expertise of anyone to be well, no matter how rude (cruel) they were to get to that happy end.

When I became the problematic medical crisis, part of the unraveling was the absence of heroes and heroics. As the many hours became many years, I came to an altogether different understanding about what I wanted of a physician and medical team, what my role was, the drama trauma tedium of the process, and if it ever ends. It’s pretty clearly that would not be an entertaining show.

Medically speaking, if there is some choice to be made, choose to be boring. Being interesting or a ‘learning experience’ for someone else isn’t awful, but it’s not ideal; and being a challenge to a medical team is downright crummy. I am not of the opinion that I can separate my sense of my self (my identity, my value, my presence) from my body (which necessarily means my illnesses). My body is the vessel by which all of the rest of it exists in the world. It’s one thing to explain this to other people, it’s a whole different conversation with medical teams — often specialized to really only recognize a part of me. I don’t want to be difficult.

On Twitter, I saw a compelling contrast of statements. Unfortunately (1) I cannot find the original post that I saw this, but (2) it is common enough that it should also be familiar to medical teams:

• From the physician: “Your online search does not compare to my medical degree + years of practice.”
• From the patient: “Your medical degree and years of being you does not compare to my years of living as this Body Self + particular concern which drove me to research it

I have a strong professional background in data collection: I have spent significant time studying not just how to do it but also how to teach it to others in clinical practice as a speech-language pathologist. In short, I know the value of being able to look at a set of information and interpret it easily. However, when applied to myself, I was told I was a “type-A personality, which is more likely to experience anxiety, perfectionism and control issues.” If I enter a conversation about how/why I charted things the way I did, I run the risk of validating that off-the-cuff assessment and overstaying my allotted time in the physician’s schedule. So I made a different choice: I don’t want to be difficult.

Aside from when I am characterized with a personality profile directly during a medical interview, am I noted as responsible, thorough, informed, educated — a self-advocate and collaborator of my own health? Is there a working theory that I am medication- or solution-seeking for situations which have none; that is, when there is no cure which completely solves the problem in a tidy way? It all runs through my head (and more) when I am trying to navigate from the inside of my body self.

It is as familiar as the back of my hand.

I find having intravenous (I-V) needles in the top of my hand intensely uncomfortable. There isn’t much flesh there and when I am dehydrated, which commonly happens before any procedure with a no eat or drink restriction prep, it is harder and more painful. When push comes to shove, it doesn’t much matter though: because I don’t want to be difficult.

End blip.

Note: among the biases I face according to my age, gender, and particular health profile, I am simultaneously aware that there are different and huge forces that threaten “difficult” over other persons on the basis of their age, gender, race, faith and cultural background, and health statuses. I do not know what the answer is, but I am ready to listen+learn so that I can do my part in making this better.