I’m living in my personal surveillance state because of lupus

What would you do if you were stuck in the grocery store parking lot, crippled by locked joints? Imagine your hands and wrists frozen after parking the car, with toes cramped, shifted apart, and bent. Perhaps your ankle rests painfully against the floorboard. You fear that shifting your weight could cause your back to lock, so you breathe deeply and try to control your anxiety.

Would you yell to get the attention of the mother parking her car next to you or the worker who’s collecting buggies? Would you try to activate your Bluetooth to make a call? Who would you call? What would you say to not cause alarm? Would you try to move, knowing it could trigger gripping pain across your chest? Or would you stay still and calm inside the hot car doing your best to will lupus to release your limbs?

What do you do when you’re trapped in a body that has spontaneously attacked you?

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I don’t know anyone prepared for moments like that. I wasn’t. But I survived and made it home without emergency medical assistance and without having to notify my unofficial and very loving secret service agents: my family.

That experience, which lasted one hour, 46 minutes, and 17 seconds (yes, I counted), has made me reassess my list of what-to-do-when-and-if scenarios.

It also made me recall a conversation I overheard between two men in an oncology waiting room. They talked matter-of-factly about living in a surveillance state and the ultimate demise of personal autonomy that could likely lead to dystopia.

Wait. Wait. Before you move on, this column is not political, and I’m not writing some rhetoric about world issues. This column is, in fact, just like my others. It’s about living and managing life with systemic lupus erythematosus, Sjögren’s disease, and encephalomalacia (softening of brain tissue).

Someone’s watching over me, thankfully

When I heard the discourse about a surveillance state, I wanted to understand their argument and why they might’ve chosen to discuss it in the hospital annex. According to Wikipedia’s generic description, a surveillance state is a government that extensively monitors its citizens’ and visitors’ activities, often using technology.

I realized that one of the men was defending his decision not to use a medical alert bracelet or a digital watch with health tracking. He was concerned about his privacy, believing it’d be violated as part of the great surveillance state.

I don’t know.

What I do know is that there’s value in deciding that your life — i.e., your personal “state” that you “govern” — will have a level of medical surveillance, even as you determine who surveys your health condition and how frequently. Do you have allies who check in weekly to hear how you’re living, to celebrate or comfort you?

In this surveillance state of yours, you establish a particular set of parameters where your agents (particularly, what I call your “Rem” friends, because they’re “Rem”arkable) will be notified if you’re experiencing the onset of a flare, consistent flare activity, or high flare alert. That notification can be a code word you say or text, much like the silent alert medical tracking devices emit.

At the start of a flare, you may activate your phone’s safety and emergency app to send a message, photos, or a prerecorded voice message to a Rem. You could also send your location to their phone using an encryption app. These are two silent, unintrusive ways to tap them on their shoulder.

In your lupus surveillance state, you give these Rems permission to step in and fully monitor you and your response to the lupus flare and symptoms. Ideally, you’ve prepared them to be proactive in treating your symptoms or getting you emergency care; they’ll move quickly and deliberately — like your personal, organized secret service agent — and you’ll comply.

By preparation, I mean you’ve taught your life partner, support team, on-again-off-again caregiver, or teenager what you need during a flare based on your typical symptoms. And because you’ve trained them step by step, they’re ready to be that trusted personal secret service agent.

You have the agency here. You’ll decide how you signal an alert — by text, call, or through your cell phone’s emergency signal. You’ll decide who gets it. You’ll decide what action you’ll have them take, even if you’re unable to assist.

Since lupus played its parking lot shenanigans with me and I had no strategy, I’ve modified my surveillance process with the steps above. When we make these decisions while disabled or differently abled, we gain more ways to live independently and more chances to celebrate.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.