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.
Been praying for you and wondering how you are doing, thus great to find your update on fb, Tanglewood Moms. Am thankful you’re better somewhat and able to do some normal things!! The pic with mask is cute and maybe a bit misleading, as you look good and a bit spunky 😀. Sure hope & pray health returns all the way soon! Its nice there is a group for long haulers – one never knows when it may be their turn to be ill. Blessings and bright tomorrows for you and family!
Thank you, sweet Elizabeth! I so appreciate your prayers!! 🙂
Wow, thank you, sweet Elizabeth! I appreciate you reading, and for your prayers and support!
A mutual friend sent me the link to your blog. I started out Monday with a severe headache and neck and shoulder aches. Fever started 99,5 but by night 101.4 By Wednesday when I couldn’t get from my bed to the bathroom without holding on to something and shortness of breath, I went to dr, actually they sent me to covid clinic, where I was tested for strep, flu and Covid …all negative I found out today. I’ve checked pulse ox often and it’s staying around 93. Every part of my body hurts and when you mentioned fibromyalgia, I had the same thoughts, but have always poopooed that diagnosis. Im a healthy active 70 year old that never stops so this is very hard mentally for me. But when it takes me 2 hours to do something I used to do in 10 minutes, it does have me worried. Thank you for sharing
Oh Jeanette, I am so sorry. That is very scary and frustrating to not have a diagnosis. We are in the same boat. To me, your symptoms sound like classic COVID, despite the test! If your Ox drops any more, I would definitely go to the ER. Please know that I am praying for you by name today!
All the way in southern California, we have been pulling and praying for you, Julie. Love the “check engine light” metaphor. If you can ever get over this and travel to see your sister, there’s a great classical rep company just a few miles from her place: A Noise Within. Speedy (deliberate, but speedy) recovery.
Thank you, Nancy! I would love to check out A Noise Within. What a cool name for a theater! Thank you so much for reading and for your kind words. I’d love to meet you someday!
Julie your story touches me deeply. As a ticket subscriber to SSG I saw the links in the last email to your blog. In 2005 I became very sick with daily migraines and all of the things that go with that, nausea, diarrhea, lethargy, and pain. As a result I lost my job and my wife had to go to work to support us. My many doctors ran every test in the book. They all had different opinions but none of them really knew what was wrong with me. We tried many procedures, medications and alternative remedies, all to no avail. I did not improve. I nearly drove myself crazy fixating on wanting to know what was causing my illness. One day, for no reason I can see, I started getting a little better. I got off of all medications and after a year I was back to normal. Well as normal as I can be being a child of the sixties. My point is that I never found out what had caused my illness and in the end it didn’t matter. The body is an amazing thing. Just don’t lose hope and keep doing the things that your body tells you will help. My prayers are with you.
Wow, Mark, thank you so much for sharing your story with me. That’s a wonderful encouragement and so validating. I’m going to hang on to this as I continue to endure each day. And thank you for being an SSG season subscriber!
Thank you for writing this! I found so many of my feelings in your words. I got sick in February, and wasn’t tested until August (obviously negative by that time). So many tests, so many doctors, so many medications, sooooo many symptoms! I’m finally starting to feel better. A few weeks ago I bought several different concealers (a girl needs options), because I was sick of looking sick on top of everything else.
Wishing you well and the best Doctors to help you get there.