I Have an Autoimmune Disorder. Will COVID-19 Make Me a Second-Class Citizen?

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Photo by United Nations COVID-19 Response

All animals are equal, but some animals are more equal than others.

— George Orwell, Animal Farm

I, along with the rest of the world, live in fear of COVID-19. But, unlike most of the population, I am petrified of the aftermath. How will society view me — someone with a dysfunctional immune system — and others like me, once we completely emerge from our cocoons? Will I be shunned and segregated? Or will I be forced to isolate myself to “protect” my physical health? What will be the cost to my mental health?

Rheumatoid Arthritis (RA) is the systemic disease that has chosen to take up residence in my body. This parasite, as I choose to visualize it, can affect any organ and/or any joint at will — often spreading its tentacles in multiple areas simultaneously. My immune system is hyperactive. It goes to eleven and beyond when triggered, wreaking havoc in the process. People with RA are more susceptible to catching a virus, developing infections, and experiencing cardiorespiratory complications. In other words, I’m poised to hit the COVID trifecta.

So, what’s a gal like me supposed to do when restrictions are lifted? Proponents of herd immunity want everyone out and about so we can all catch it, recover, and develop antibodies. That is all well and good unless you’re one of the individuals most likely not to survive such a grand Darwinian roulette.

I realize I am not in the majority. We need to reopen our economy, get kids back in school, and restart society again as soon as possible for it to survive. It would be unrealistic (and selfish) of me to expect anything less. I just wonder if it will be safe for me to go out and play. Will I even be permitted? Is becoming a recluse my mandated future? Human contact reduced to the afterglow of a digital screen.

Underlying Conditions

Currently, I am unemployed. My chosen field, travel and events, has not only been shut down by the pandemic — it has been decimated. In all likelihood, it will be one of the last industries to recover. I am but a single droplet in a sea of millions that will be seeking new employment once our first crisis wave is over. It is illegal for an employer to inquire about medical history, but how long will that protection last? Italy and Germany are considering issuing COVID immunity certificates. Dr. Anthony Fauci told CNN the idea “has some merit” and is “being discussed.” All things being equal, won’t the candidate most likely to weather an outbreak be the more attractive option? I can envision a world where my economic future is regulated by my health condition. Ala Willy Wonka, I could be barred from entry to the factory unless I possess a golden Corona ticket.

Even if I can find employment, will it be safe for me? Restrictions are being lifted across the country, but the guidelines for those of us with autoimmune disorders are still in place. Web MD and Arthritis.org both advise avoiding travel (that’s a boost to my career), staying home as much as possible, and forgoing physical contact as much as possible with anyone outside your home. “Healthy” agoraphobia will be in control of my social life for the foreseeable future. Left behind while the general public moves on.

Our new world rests on order. The danger is disorder. And in today’s world, it can now spread like contagion. — Tony Blair, 2003

Apple and Google are ready to roll out their COVID Tracker app. Health agencies and the like will be able to use it to verify an individual’s COVID status. If you encounter someone who has tested positive within the last 14 days, you will receive an alert on your phone. Privacy issues aside for the moment (as of now, it will be up to the user to enter his/her COVID status), they have yet to minimize the number of false positives to an acceptable level. That’s reassuring. Can you imagine a chorus of viral emergency alerts blaring as you are walking down the street? People could be dodged like COVID zombies — their uncleanliness determined by Bluetooth.

The coronavirus has also recharged the call for a Unique Patient Identifier (UPI) system. All citizens would be issued a code, similar to a Social Security number, that provides access to their personal health database. Your entire medical record available within a few keystrokes. Proponents of UPI say it will make it easier for doctors to make diagnoses and provide proper treatment to patients. Citing security and confidentiality issues, opponents are wary of having such records under the control of the Federal government.

When HIPAA was passed in 1996, it mandated that the Department of Health and Human Services (HHS) create a UPI system. Two years later, Congress prohibited funding such a project due to privacy concerns. The subject has been debated every year since and in June 2019, the House voted to lift the ban. In September, however, the Senate appropriators left it in place and so it still stands — for the time being.

As a patient that has had been under the care of multiple types of physicians due to my condition, I can see the convenience of such a system. No more lugging charts from office to office or trying to remember all your past surgery dates and previous medications when filling out forms. The worry lies in how all that collective data will be analyzed. Will pre-existing conditions predetermine the quality of care? Will classifications based on antibodies and immunities ultimately determine our employment, housing, or recreation options?

That’s All Folks

I’ve read my fair share of dystopian novels. Set my eyes upon hours upon hours of post-apocalyptic tales. Perhaps they’ve altered my world view — sowed a bit of paranoia into my fertile imagination. Prompted me to foresee an ominous hierarchy at every turn.

There is no doubt I am overthinking. It’s been my stress reflex even before we were forced to steep in our own thoughts for months on end. I would like to think of my musings as a fine Earl Grey: Bold and rich, with a touch of aromatic citrus. More likely, they are like the gooey remnants remaining in a teacup forgotten on a desk for at least a week.

In reality, it’s the uncertainty of it all that sends my fears into a category 5 tailspin — whirling around me like the Tasmanian Devil. Oh, how I long to be Tweety Bird — projecting wide-eyed innocence, while always having the upper hand. Being ready for every contingency is what has always provided me peace of mind. Having some sense of control — even if imagined — is what settles me. The uneasiness resides in getting prepared for uncharted territory. Society’s next blueprint has yet to be drafted. Will I be deemed suitable for inclusion or cast off? There is nothing to but sit back and wait.

Skin Hunger is Real and it Scares me to Death

Will staying out of touch remain our reality?

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Tell me in a world without pity
Do you think what I’m askin’s too much?
I just want something to hold on to
And a little of that human touch
Just a little of that human touch*

There’s a premise that has been disturbing me of late, looming in my hopes for the future like a murky fog: After months in isolation, will we remember how to reconnect? Will we be wary, cowering from physical contact? Can we exist in a world where exchanging hugs or pats on the back become taboo? If so, what will be the repercussions on society’s soul?

Touch has a memory — John Keats

I began writing when I was a recent widow. In my first piece, I attempted to describe how “unprepared I was for the craving of non-sexual intimacy…” How the yearning for simple touch was a physical affliction akin to detox. Each time I witnessed a spontaneous caress between a couple, I withered a little bit more.

Touch is the first sense we experience, fostered from the moment we are born. It is conveyed via the organ that completely envelops us, yet often it is an afterthought — until it is absent. My nephew was born prematurely with numerous health issues. Laden with medical equipment, he looked more cyborg than human. My brother and sister-in-law remained affixed beside his sterile bassinet, pining to soothe him.

Numerous studies have demonstrated the benefits of skin-to-skin contact, particularly in preemies. Also known as kangaroo care, the baby is stripped of garments and cradled in their parent’s bare chest. Stabilizing breathing patterns, regulating sleep and increased cognitive development have been linked to this practice. Benefits to the parents include decreasing stress and increased breast milk production. And so, my brother and his wife anxiously awaited this treasured thirty minutes granted to them each day. This nugget of time more precious than gold.

If one is out of touch with oneself, then one cannot touch others — Anne Morrow Lindberg

The deprivation of human touch has been termed “skin hunger.” Insomnia, anxiety and aggressive behavior have all been linked to the lack of physical contact. According to Psychology Today,

People who feel more affection-deprived: are less happy; more lonely; more likely to experience depression and stress; and, in general, in worse health.

So, what does this mean for those sheltering alone or front liners sequestering themselves from loved ones? Social distancing is now how we demonstrate affection for our fellow man. Stay six feet apart or you may end up six feet under.

When we finally emerge from our quarantine cocoons, will we recall how to interact? Will fear cultivate hesitation? Dr. Anthony Fauci has advised we never shake hands — ever again. Clothing categorized by PPE quotients are sure to appear across our Facebook feeds. Attire labeled with antimicrobial factors may soon be touted in Amazon Lightning Deals. The last episode of Saturday Night Live had a soap opera spoof parodying the perils of dating during an outbreak. Daniel Craig attempts to make out with Kate McKinnon through a large swath of plastic wrap. Are full-body condoms far behind?

The faintest glimmers of “flattening the curve” are on the distant horizon and some have started to contemplate what society will look like once the immediate COVID-19 threat is over. When queried about what our future holds during a recent White House briefing, Dr. Fauci replied:

When we get back to normal, we will go back to the point where we can function as a society. But you’re absolutely right. If you want to get back to pre-coronavirus, that might not ever happen in the sense that the threat is there.

It is said that every time we embrace someone warmly, we gain an extra day of life. So please embrace me now. — Paulo Coelho

I hail from a boisterous Italian family. No hello or goodbye is without an embrace and a kiss on the cheek. Our personas burnished by such affections to glistening patinas. If that is taken away, we might as well be mute.

What will happen to the rush of holding someone’s hand for the first time? Or the intoxicating scent of a newborn nestled against your shoulder? How will our collective psyche be altered without such stimuli? How out of touch can we be and still maintain our sanity?

The Great Toilet Paper Shortage of 2020 will be recorded in the history books as the first panicked response to the pandemic. Will the next be a run on HAZMAT bunny suits, beekeeper apparel or even fencing uniforms? Always on guard, will each encounter be a duel? Five touches and you’re out.

This is my second bout with touch deprivation. My greatest fear for myself — for society — is that we become calloused. The wounds of confinement scab and scar, smothering our ability to register emotion.

You might need somethin’ to hold on to
When all the answers they don’t amount to much
Somebody that you can just talk to
And a little of that human touch*
*Bruce Springsteen

#COVID-19 #Relationships #HumanNature #MentalHealth #Touch #NewNormal