A year ago, if you had asked me what I’d be doing in June in 2020, I would have said, “deciding whether I should go blonder.” Make no mistake, I continue to ask profound life questions like this one because even upon my death bed I shall require good lighting. I’m just asking additional questions now, like, “Will I be sick until always?”
I became a member of the Long Haul Covid Fighters Facebook group last month. These are people who have suffered with COVID symptoms for 30 days or more. In the time since I’ve joined, the group has grown from 862 members to 4,012 members. Today marks Day 75 for me of illness. At this point, I sincerely do not care whether I have COVID or not. I am just ready for my plight to be at an end, whatever its cause or nature.
My 12-year-old son Drew was also weary of me being sick — well, looking sick — so he asked me to start putting on my makeup a few weeks ago. God bless him. For Mother’s Day, he helpfully purchased a palette of Maybelline eye shadow called “THE BLUSHED NUDES,” which promised my transformation into something luminous you’d find hanging with the nekked-people paintings at the Kimball. So, I began putting what might be called “outfits” upon my feverish body and applying makeup to my dry and hollow face.
Because I have tested negative for COVID, my symptoms must be pulled apart like brisket by specialists trained to look through the lenses of their respective disciplines. After a battery of tests, a cardiologist pronounced my heart “inflamed,” and not in the swooning, 2000s Ryan Gosling sense of that word. On Monday, I was told by an infectious disease doctor that perhaps I have Fibromyalgia since my bloodwork and 986 tests for funguses and other viruses and organ function and blood counts are coming up normal. Later that day, a pulmonologist told me that perhaps I have asthma, based on the results of my pitiful lung capacity test. Dear reader, there is much I do not know about the workings of the human body, but this I declare with great boldness: I did not contract FIBROMYALGIA AND ASTHMA THE SAME WEEK IN APRIL.
On Saturday, April 11th, I ran 3 miles, walked another mile, went to the grocery store, and cooked dinner. On Easter Sunday, April 12, I was running fever on the couch and have never been the same since.
I suppose it is possible, during the COVID outbreak, that I just so happened to contract a microbe called, oh, I don’t know, FIBROCARDIOASTHMA, which also presents with fatigue, fever, shortness of breath, coughing, tachycardia, diarrhea, weakness, tremors, dizziness and brain fog. Would you bet American dollars on this possibility or on the COVID testing being problematic?
That’s what I thought.But again, I don’t care. If it’s FIBROCARDIOASTHMA, fine. Just make it stop so I can go bike riding with my kids, m’kay thanks bye.
One thematic lament among many Long Haulers is that their doctors (read: not ALL doctors) have been dismissive and suspicious of their complaints which do not fit the set prescription and duration we’ve all been told: you either die or barely skirt death in the hospital, or you have a mild case that resolves itself within two weeks. These are your two options.
And though many, many Long Haulers are repeatedly testing negative for COVID and COVID antibodies, they are still being told they absolutely do not have the illness, despite tell-tale symptoms and every other test ruling out every conceivable thing, AND despite the documented unreliability of the tests themselves. Eventually, doctors stop responding to phone calls. Anxiety meds are prescribed for “psychosomatic” symptoms. People are sent home from ERs with little instruction or sympathy. These things are happening every day to Long Haulers.
Thankfully, I’ve only experienced this a little. Thankfully, my PCP is sticking with me long enough to get me in with specialists. Thankfully, I’ve not been driven to call suicide hotlines like several of my Long Haul friends.
I’m afraid it’s just that many doctors are suffering from an acute form of Lack of Imaginationitis in which a dogged allegiance to testing totally inhibits the creative right side of the cerebral cortex which might suggest new possibilities with an illness that does, in fact, have the word “novel” at the beginning of its name.
(See, I’m an actress, so I know stuff about medicine, and I know even MORE about the imagination!)
((Granted, “using one’s imagination” doesn’t sound like reliable medical science, but maybe common sense should win out over science at this point.))
Of COURSE it’s scary to doubt the testing. Our governmental policy, livelihoods and schools are dependent upon the cold, hard FACTS, and those facts are the dang test numbers. And if we can’t trust the testing, can we trust the coming vaccine? Nobody, including me, wants to add tremors to the already shaky ground.
But here I lie, an enigma wrapped in mystery wrapped in bacon.
One of the most affirming texts I have received during my illness has been from a friend who said, “You surely must have COVID.” As awful as the reality of having COVID is, what is far, FAR worse it being suspected of drama. (Even for an actress). But my friend mercifully did not pull out the Maybeline to pretty me up and put symptoms down. She echoed my cry of common sense: this must be ugly old COVID.
But hey. I’m better than I was. I really am. There was a time in April when getting up off the couch required permission from the Space Station. Now I cook some dinners, take some walks, do some laundry. My temperature is only 99.3 tonight. I even climbed the stairs yesterday. Twice!
A motley crew of supplements, beta blockers and inhalers, plus a gentler posture towards achievement and rest, are helping me through. Not to mention friends who drop off gelato and books and pasta (or aloe vera, as when my son got a sunburn and I couldn’t run to Target). God bless my husband, my mother, and my mother-in-law, especially.
So listen. Please wear a mask. Be prudent. Imagine what it would be like to stand up from the couch and have every CHECK ENGINE LIGHT illuminated on your dashboard all at the same time for weeks on end.
And if you get sick anyway, I’m here for you. Please reach out. Please let me bear witness to your immense sanity in the midst of your suffering. Let me help you haul, even if you’re on a brief 14-day stint, even if you don’t test positive.
I promise to throw in a brand-new palette of THE BLUSHED NUDES as a bonus.
For more resources on COVID Long Haulers, check out:
“Covid-19 Can Last for Several Months” – The Atlantic: https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/
“If you have Coronavirus Symptoms, Assume You Have the Illness, Even if you test Negative” – The New York Times: https://www.nytimes.com/2020/04/01/well/live/coronavirus-symptoms-tests-false-negative.html
“Will My COVID Symptoms Ever End?” – The New Republic: https://newrepublic.com/article/158108/will-covid-symptoms-ever-end
“These People Have Been Sick with Coronavirus for more than 60 Days” – The Washington Post: https://www.washingtonpost.com/health/2020/06/11/coronavirus-chronic/?arc404=true
“I Caught Coronavirus Months ago. I didn’t expect to still be struggling now.” – Huffington Post: https://www.huffingtonpost.co.uk/entry/coronavirus-symptoms_uk_5ed67b7dc5b68a110026c36a?guccounter=1&guce_referrer=aHR0cHM6Ly9zZWFyY2gueWFob28uY29tLw&guce_referrer_sig=AQAAADjvWRJSu_bAyXiQuNh7gfv9RzmEHOUBy1Z1cZw_wtQfDn70zx4kt83LeRZpuHvlCONwINjcJX5GNkIx0vuDFFWOSP1YFb6_PVj44WQmTUfjhQ5a8L51G7bhIQlpmDRB9QcZ9V8lQudbLASSXRDyLAa3nQfaN38HLN5ZOB58WnSB
“People with COVID-19 symptoms are resorting to Facebook groups for answers” – Fast Company:
“False Negatives in COVID-19 Testing: If you have symptoms, assume you have the disease” – Healthline: https://www.healthline.com/health-news/false-negatives-covid19-tests-symptoms-assume-you-have-illness
“The Way That COVID-19 Tricks the Immune System Could Result in more severe illness” – Forbes: https://www.forbes.com/sites/williamhaseltine/2020/05/27/a-nasty-trick-in-the-covid-repertoire/#34273b4b69e6
Julie Rhodes is a freelance writer and actor in the Dallas/Fort Worth area. She writes regularly for Madeworthy magazine and the Tanglewood Moms blog.