Holidays and HIPPA

You enter the room, with its tinsel and blaring music and bright lights and people. It is time to brace for the inevitable interrogations that are as traditional at holidays as the cheese balls and stockings. You’ve prepared. You disguised yourself as best as you could, in complementary colors and careful makeup, but now it’s showtime.

“Oh, hi!!! You look so nice!  You don’t look sick at all! How are you?”

It has begun.

You practiced in front of the mirror. It is almost worse than being told yourself, this moment when you have to meet your relations and friends, confessing details about your physical condition, correcting whatever has been heard over the grapevine. HIPAA has no place in the hallowed holiday halls. You drilled the pronunciation of your diagnoses like last-minute prep for a French exam. You carefully developed sketches for the more visually inclined in the crowd. You worked on eye contact and, above all, your confident smile, head slightly up, eyes crinkled just so. It’s not the time to show fear or anger or sadness, not here. You practiced how you loud you’d have to say it, over the rumble of dozens of other conversations. You thought of several variants — how you would explain it to the kids, to your grandparents, to your favorite aunt, to your annoying cousin, to the old neighbor from down the block…

You find yourself praying for some minor disaster. A cooking fire would be about right, or a power outage, perhaps.

And then you try to imagine yourself as an actress on the red carpet as you sweep through — “no, extreme yoga isn’t recommended for someone with joints like mine.” Each encounter with sympathy, pity, incomprehension, and sorrow lodges in your soul. You will know to whom the words “chronic” have weight, and to whom it will just be a meaningless pair of syllables. You will be able to recognize soon, from the slightly desperate looks and the rapid patter of conversation, those who are uncomfortable with a line of conversation they began and those who are quite as uncomfortably in a same situation as you, even if the cause and symptoms are different.

Then partway through the jumble of holiday events comes a stunning realization, bright as the inevitable triple flash for the holiday group picture.

You don’t have to get this perfect. Yes, some might love you. Yes, many may care for you. Yes, you will do your best. But they (usually) aren’t doctors. They are not the patient. You are. Your illness matters the most to you, even if it affects these others, with their holiday sweaters and decorated napkins. If you have to stop, you do. If you chose not to answer the unasked question, it is fine. If you deflect an intrusive interrogation, that is ok. If you decide not to take the offered packets of suspicious weeds, pills, powders, or crystals, it is all right. Possibly even better than all right!
You will go home, and if you take off your smile like a Hollywood starlet takes off her Oscars dress, climb into pjs, and collapse into bed, that is all right as well.

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