my black folder (delhi summer illness 1)

Since i have lost much of the two months to an extended illness — and since my original reason for getting into public health was unsatisfactory doctor-patient relationships and inadequate assistance helping patients navigate hospital and health systems — it seems to make sense to write about observations and frustrations i had seeking treatment in delhi. i offer this up in the spirit of participant-observation research — not seeking sympathy but trying to point out what is currently not/working. i definitely welcome stories from others seeking health-care in india or elsewhere in the comments: this is a conversation that requires much more attention and probably research.

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There are three disclaimers. First, i am an extremely privileged patient in Delhi and attend one of the (arguably) best private hospital chains in town. So my case should be taken as something of a ‘best case’ in terms of how i am treated and my experience navigating the system. Second, being sick has made me incredibly grumpy. Third, we are still not entirely sure what i had/have. Given the on-going outbreak of chikungunya in Delhi and my symptom set, this is a plausible guess — but in full disclosure, the test for this and multiple other viruses were negative. While many people in Delhi seem satisfied with being diagnosed with ‘a viral,’ not knowing what i have is hugely frustrating.

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Whatever i have, ‘joint pain’ does not do justice to the experience — i have had what i would classify as joint aches or pains in the past and this weren’t it. Overnight-onset arthritis begins to get to the point: too painful to walk properly thanks to weak and angry feet, ankle & knee joints; too stiff and painful to make a fist around a bottle of water and elbows too weak to support the bottle anyway; etc. Suffice it to say, rapid aging it isn’t much fun:

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While this whole illness narrative begins a month back, this blog’s story starts today, as i am preparing to go spend a bit of recovery time with my parents in TX and get a second opinion in the process. My mom is scouting for a rheumatologist there (thanks, mom!). She wondered if i could just have my doctor here in Delhi just fax over my notes so far (because the new doc wants to review them before accepting me?). Well, no.

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Which brings me to my black folder. There is no patient filing system that stays at the hospital for me here in Delhi, though i presume the hospital tracks some sort of information linked to my mobile number in the computers at which people are always tapping (they are very capable of sending via emails the status of my reports or texting to quiz me on my satisfaction).

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Each visit generates quite a bit of paper for which i am responsible, making me in a very tangible way the curator of my health history. i find this slightly stressful and, again, unlike a lot of patients, i can read and comprehend the vast majority of what is in my file (handwriting aside), can sort through and put it in date order, and so on.

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At a minimum in a visit to my hospital, there will be the consultation fee receipt, the consultation notes + script and the receipt for medicines purchased. But, likely, there will also be an additional receipt for diagnostic tests to be rendered and then, at some point, the results of that test, whether it is a printout, a scan, an xray, etc. i have to carry all of these. These papers should be ready at all times. For example, vital signs are recorded on my consultation receipt for imperfectly clear reasons. The receipt is then taken out of my possession (ack! i need to photo that for insurance claims!) to be laid before the doctor, who sometimes notes down my vitals on a fresh notepad before beginning the consultation scribbling. More paper.

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For awhile, one pretends that the soothing seafoam-green envelope proffered by the hospital/clinic along with one set of test results will suffice for the burgeoning ream of paper. But any sort of ongoing illness puts that rapidly to rest. Your makeshift, portable medical record is suddenly and literally coming apart at the seams when you have an extended illness episode, along with your feeling of being able to present your case to another doctor (or to the same doctor, since they have nothing else to which to refer back).

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Now i have upgraded fro a tattered folder to one of those report-type folders with the plastic sleeves built-in — the kind with a tab on each sleeve, which i have labelled with the month. Each month contains all the the august sleeve is pree-tty full but it is doing the job nevertheless. Mostly.

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Over the course of this illness, i have worked to keep everything as organized in this folder as possible as a way of imposing some order on the multiple visits, the multiplying symptoms, the confusing test results and their implications for yet more tests. When your fingers aren’t working properly (or more generally when you are feeling like crap), it isn’t very fun to sort through these papers and supple-ly sliding them into the slippery plastic sleeve. It also isn’t particularly fun to clutch this increasingly sweaty folder while you try to navigate your way through jostling patients, especially when your standard elbows-out strategy has been rendered impossible. Hospitals, as i contend in future posts and as others have said before me, aren’t very easy places to be sick. And, at least in Delhi, to be without a chaperone/Moses.

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But one does carry one’s plastic folder to place before the doctor: see, i am a good patient. A conscientious patient. You can tell because my files are in order that i will probably try to follow your prescriptions and that i get what is going on here. And that this whole thing has been ‘going on’ far too long. We can both see that, right?

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i can’t pinch my fingers properly to pull the sheets out for you but here, this is the August sleeve. You can just pull them out and… sure, spread them all over the desk. Gah, this is the same feeling as when you had the immigration officer with your finger marking the visa page and they insist on closing the passport booklet and then casting you disgusted glances when s/he can’t find your visa. But worse.

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Yes, i could point(-ish) you to what you’re asking about… but rifling through will work eventually as well. Taking a call while you’re looking and while i’m sitting here will definitely help as well. Oh, you’re done? Then, sure, sweep everything back into a haphazard pile and then just… OK, bypass the plastic sleeve. Just close the cover over the whole mess. That’s cool. i just spent 3 minutes explaining how painful it was to work my fingers and i assume you were listening because you prescribed multiple blood-tests and several medications of questionable necessity. You even took notes. Including those notes, altogether, that’s four more pieces of paper i am going to acquire in the next hour. To add to that mess you just made of my medical history. To clutch-ish until i get home and then sort the whole damn thing again after the next painkiller to show the next half-interested doctor that i am a good patient, it’s just that the illness isn’t going away.

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Look, it’s all here in my folder. Dammit. The folder tied the whole thing together.

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fresh fruit, folk flu, confessions, cold season, & conclusions

the main gist here is that it is not fun to have an illness with no name, no clear prognosis, and, insofar as someone thinks it is necessary, no clear, commensurate-to-symptoms treatment plan. the need to restate this grew out of recent discussions around malaria diagnosis and treatment of malaria and the broader range of illnesses that can cause malaria-like symptoms.

the introduction of diagnostics into the SOP of addressing malaria results from the change in WHO policy away from presumptively treating all fever with malaria medication. using malaria meds as the answer to all fevers has led to over-use of malaria meds, lowering the mojo of their api. and, the likelihood of mistreating a fever as malaria is rising as underlying malaria epidemiology changes. as such, this seemed like good moment to reflect on other common understandings of the causes of symptoms and how they should be treated, as well as the desire for some treatment that matches the symptoms. i focus on a few US/UK examples, especially as we move into cold season.

the first confession is the nearly obscene number of times i have watched this sketch, in which john cleese teaches his students to defend themselves against fresh fruit, which he sees as the weapon of choice of most criminals as well as the root of most illnesses (or the cure for illnesses, including flu, depending on which version you watch).  cleese fears fresh fruit – far more than point-ed sticks – and therefore proposes it as the cause of  any problem with nebulous threat, as well as enacting fairly disproportionate treatments given the threat.

the second confession is how much i didn’t care for the article i am about to summarize. at the time, as one of the first reads in my first medical anthropology class in undergrad, it seemed awfully mundane in the face of a selection of many more romantic and exotic articles about places i had not yet been and diseases which i had not yet heard of, let alone had. but, i have ended up returning to it many times – more than some of those other articles. this is mccombie’s piece on ‘folk flu and viral syndrome.’ the article is quite amusing, interesting, and worth reading in full. mccombie describes that in the southwestern US, at least, people use ‘flu’ as a catch-all for feeling crappy, including covering a probable hangover. this ‘folk flu’ and misinterpretations of ‘flu-like symptoms’ can be a real impediment to appropriately treating the actual cause of the symptoms. similarly, better understandings of ‘folk malaria’ and how to convince people that their symptoms are caused by something else would be useful (some research has, of course, been done on this, including by mccombie; i’d suggest that additional qualitative work would be quite helpful). the second half of mccombie’s article covers the same type of catch-all for non-specific, undiagnosed problems by providers, who label a problem as ‘a virus’ when ‘they aren’t sure’ what is wrong with you. it’s better than being told that you are imagining things, of course, but not all that much.

the third confession is that i am/was an airborne junkie at the first sign of illness, especially in the face of symptoms with no clear bacterial or otherwise medicate-able diagnosis with something more than fluids and rest. this craving extends to using echinacea lollipops (found only in the US, i presume?), terrible zinc tablets that make one vomit, etc – almost anything (not mint) to feel like i am being proactive. if there ever were a place where it makes sense to try to introduce placebos as an actual treatment option, the ‘treatment’ of non-life-threatening viruses that make you feel generally crappy must  be it. it would limit the temptation to mis-treat with powerful drugs whose powers we all benefit from preserving. (see @danariely on the excellent placebo qualities of airborne for guidance on the way forward.)

so, fourth confession, i wish we could introduce placebos as an actual treatment option, for ‘flu’ and ‘malaria.’ if you’ve watched the birdcage (the robin williams & nathan lane version), you’ll know the value of ‘pirin’ tablets. as for the ethics of this and the providers’ ability to keep the secret, that’s for another debate.

but the initial point holds. people want a named diagnosis that makes sense, that has some sort of prognosis, and that has a treatment that fits our conception of the problem. so, we may not be able to do placebos but we also probably don’t need to release a tiger to tackle a man wielding a banana or loganberries, threatening though that can seem. once a tiger’s (antimalarial, antibiotic) out, it’s kinda out. you need to give people a comforting way to feel proactive without calling down the thunder.