The C Word
It's funny, we've been dealing with covid almost three years. There have been over a million cases of covid in my state of Maryland alone, yet if you tell someone you caught it, you might as well tell people you got a venereal disease from a debaucherous weekend in Cabo. Maybe if we work on the stigma, we might see some progress.
My family caught covid for the first time, a few weeks ago. My daughter had a runny nose on Monday night, we figured it was allergies. But she woke Tuesday morning destroyed and an at-home test confirmed our fears with two dark lines. She donned a mask and was quarantined to her room but my husband and I had symptoms by that afternoon and by Thursday were also getting two dark lines on the at-home covid test.
When you tell someone you have covid, the first question asked is where you think you got it. This shows how three years into this “new normal,” folks still do not understand covid. Acting like it's an STD and not an airborne illness, you're expected to go through your engagement calendar and admit what escapades transpired. The thing is, you may not know where you got it. You may have literally walked through the cough of an individual who you never see, who darted into a car or coffee shop before you crossed their path.
You can wear masks indoors, shy from large gatherings, get your vaccine and boosters, and still get covid. And even with those masks and boosters, you can still get bad enough covid that you know what you experienced, your elderly relative or friend with a suppressed immune system may not be able to handle. And my fellow grown-ass women? We're at serious risk for long-term effects from the C word.
Being “Good”
After playing psychic and trying to guess where you caught covid, you then go through the song and dance of how careful you have been. How you still wear a mask at the grocery store, the bank, the mall. How you've gotten your boosters, you traded the germy gym for an at-home Peloton bike, small concert venues for outdoor amphitheaters. You've been good.
The thing is, when you catch covid and you go through this song and dance of proving your goodness you realize all the ways you have gotten lazy since Lockdown. You only had to run in and grab a latte to go, you leave your mask in your pocket. You meet friends for dinner; you wear a mask to the table but don't put it on the rest of the night as you laugh, hug, lean in to talk in a lower tone, maybe even offer a bite of your dessert, kiss cheeks goodnight. It's okay it's not for long, the place wasn't very busy, it's just with friends and family and you know they've also “been good.”
We've all experienced trauma from this period of time, even if we haven't lost a loved one or contracted the virus. But like childbirth, our brains try to forget the trauma and forge on. But you know what? Even though Biden states otherwise, we're still in the middle of a pandemic that while isn't killing as many of us, it is still infecting a lot of us. Even if individuals are vaccinated and boosted and “being good,” Covid is has folks weeks out of commission and for some, months and years of lingering symptoms.
The C Word Stigma
My daughter begged me to not tell her teachers she was absent due to covid. Her classmates who missed school for covid were teased, while those who had the regular flu received sympathy. After one week out of school, we agreed I had to tell her teachers, who had already assumed such, but were glad to have more information to explain her being home so many days.
I spent my entire time sick emailing brands and organizations I work with, explaining that I can't shoot that content right now, I can't attend that event, I am late in replying to that email, I missed the cutoff for that opportunity because I have covid. The responses are usually sympathetic, a few have been snide. The most popular response is, “I'm so sorry. I haven't gotten it yet!”
I haven't gotten it… yet. It's a boast with foreshadowing. Sorry for your luck, mine is better… so far. Even in this moment where I am feeling superior, I know the writing is on the wall.
I did this myself before I too caught covid. “I'm so sorry you're sick! Can you believe no one in our family has gotten it yet?” I read those articles about folks who seem to be immune and thought, maybe that's us too. Maybe we're just “being so good” or maybe we just have some sort of superior genes or immune system. Nope, it was just chance and now it's our turn.
Sadly, another response I receive is the extremely diplomatic equivalent of, “tough shit.” I am so sorry to hear you're feeling under the weather, but the work is still due. I don't care if you're on death's door, a professional meets their deliverables and you're overdue.
The Many Different (and Weird) Symptoms of Covid
My daughter had textbook covid symptoms for the vaccinated and boosted. An unproductive cough, congestion, fatigue. She slept a lot (even more than a typical 13-year-old), sometimes was a brain fog zombie, but sometimes felt good enough to work on school assignments and play computer games with her friends while on a video chat app. Once the fever was over she felt great, went back to school, plenty of energy for classes and activities after school.
I on the other hand… my covid symptoms were nothing I would want another person to experience. Joint pain and muscle aches so extreme, that I struggled to walk downstairs, stepping with both feet on each step while clinging to the banister. Random pain, like the pain I had in my right thumb for two days, reminded me of when I pinched a nerve. It was electric and hot and random and I couldn't sleep. My THUMB, and just one thumb, was in such pain, and then as soon as it started it was gone.
As a person with a uterus, I noticed weird things in regard to that part of my body. Breakthrough bleeding, cramps not at the same time as ovulation or PMS, change in discharge. I had one day where my nipples were so raw it hurt to have anything touch them. Also, my ear piercings, even ones that are decades old, were sore and infected.
I didn't realize I lost some of my sense of smell until one evening my daughter was complaining that the house smelled like burned pizza (covid brain fog and cooking can do that). I couldn't smell it at all. That night when I went to brush my teeth, I couldn't smell the toothpaste. I opened my bottle of Listerine and took a deep whiff… I smelled it, but it smelled as though it was far away.
The headaches changed on a daily basis, but usually woke me around 6am. Some were so intense they reminded me of the migraines I used to get when I worked retail. Those hit one side of my head, these hit the entire face. Some felt like my heartbeat is trying to escape. Others just made my head so sensitive, brushing my hair out of my eyes hurt.
I could have one day where I felt amazing. I was bedridden on a Friday, but that Saturday I felt amazing. I tried on clothes that had been sent from brands, I deep cleaned my bathroom, I wrote for a bit, and changed the sheets on the bed. But come Sunday, I was so fatigued watching a TV show was dizzying and I had to turn it off.
I think of my mom, who already deals with pain, and how having covid symptoms like this would be unbearable and so debilitating physically but also mentally. I think of how much time went between when I may have been exposed and when I felt symptoms… where did I go, what did I do, who did I infect? Who with a suppressed immune system, chronic pain, or preexisting issues may have gotten it and made my temporary suffering look like a walk in the park?
The Neverending Covid
I felt sick September 13th. It is close to a month later and I am still feeling the effects of covid. While I am no longer able to infect others (and have all kinds of lovely antibodies to protect me from this strain for a couple of months), I am still not back to normal.
My husband is about 95% recovered, I am at maybe 75%. I took a half-hour walk, a leisurely pace on a relatively flat ground and was so winded I had to take a break before finishing and heading home. I went to Brazillian Jiu Juitsu, thinking I was well, would do a “lite” version of the class with my husband as my partner, keeping it chill but after ten minutes I was so winded and my headache so intense my eyes wouldn't stop watering and I had to go to the car. I reclined the seat and put my jacket over my eyes to try to recover.
Being so behind with brand campaigns, I rested up to do a photo shoot, which required changing into a variety of outfits. We finished it in about an hour and after I was so exhausted I had to lie in bed for a couple of hours. My brain wasn't tired, but my body needed to be horizontal to recover. Writing this, I still have several more contracted campaigns I signed up for before getting covid I still have to do. I need to figure out how I do them without overtaxing my still-recovering body.
I think of how I shared these symptoms I experienced and some are shocked. They only had a mild case, am I sure I got a booster? Yes, got the card to prove it. Not everyone with a vaccine will go unscathed, and my experience is not unusual. I didn't need to be hospitalized, I didn't need a ventilator, I survived. That is why I get vaccinated. Vaccination prevents death, it doesn't prevent covid.
Unlike the flu, which may have one bedridden for a week, covid has no typical timeline. As I share my experience, I get more stories from those who have been homebound for weeks, with symptoms fading and new ones taking their place. A day or two of feeling on top of the world and then another few more days of feeling like death warmed over. Those who recovered enough to get back to normal, but finding themselves weaker, a lingering cough, dizziness, brain fog, a new health issue that has plagued them for weeks, months, and some say for years.
With these stories, I also hear stories that folks were only given X days of PTO, Y days to recover, and then they had to get back to normal productivity, normal routine, normal rise and grind. In my field, the majority of stories I hear are from women in midlife. But I'm finding it's not just because of my field that I am hearing more stressful covid experiences by women.
Women in Midlife and Long Covid
Did you know women are more likely than men to get long covid, and of women, those who are premenopausal or menopausal are at the highest risk for longterm effects from covid? Did you know a mild case of covid can still cause long covid? You can have not a single symptom when you have covid yet still end up with long covid.
Studies repeatedly share that midlife women are most susceptible to long covid. They mention there could possibly be a correlation with hormone levels, or maybe it's just age and greater chance of having preexisting conditions. No one seems to have pinpointed the connection between midlife women and long covid but in my opinion they're ignoring the environmental issues likely causing it.
We're the age of being invisible and easily replaceable while also the age where we are the caregiver. We are in high-stress jobs where we're constantly working twice as hard as our male counterparts to be respected let alone be seen. We're still caring for our children while also caring for our parents. We've been teetering on a “having it all” tightrope knowing that one more thing on our shoulders will cause us to lose our balance.
We're used to working through the pain. From middle-school menstrual cramps to college sexual assaults to taking the bare minimum maternity leave to stay on the partner track at the office. We've worked through migraines and miscarriages, hysterectomies and hemorrhoids, cancer and chronic pain, and still won awards and cases and clients. We may not have it all but we can do it all and after all the things we've been dealt in life we're not going to let a little covid hold us down or make us look weak.
Maybe it's not hormone fluctuations causing our increased risk of long covid. Maybe it's our can-do spirit. And maybe covid is telling us that what doesn't kill us won't make us stronger, it may weaken us for the rest of the time we have on this planet. And even though society may think otherwise, we know that midlife is exactly that… just the halfway point not the final lap.
What can we do? Sadly, not a lot. Jobs aren't set up for TBA endings to illnesses and caregiving doesn't offer PTO. When you've proven time and time again you can do it, you don't get a lot of understanding and grace when suddenly you can't.
Studies on hamsters show that inflammation to the olfactory bulb, a part of the brain involved in processing smell as well as in emotion and learning, happens with covid, and is very likely to remain inflamed long after they recover from covid, which is considered chronic inflammation. And chronic inflammation in the olfactory system correlated with behavioral changes in the hamsters thought to reflect mood disorders like depression and anxiety.
So we get covid. We're depressed thinking about how our diagnosis will affect our jobs, our family, our income, our future. We feel anxiety over trying to balance our lives and our health. This causes inflammation, which can exacerbate covid and may cause long covid. And long covid may give us… more anxiety and depression. Awesome.
The Oxygen Mask Theory
I don't have any good answers for those of us who get covid and can't take the necessary time to heal, but I do for those like me who feel stress and guilt when they're at rest and feel they don't have the luxury to stop.
It's the oxygen mask theory, the one I've been talking about forever on Wardrobe Oxygen because I want you to be smart about your mental and physical health, but also because I'm reminding myself.
When a plane is in trouble, oxygen masks will drop from the ceiling. You are to put your own oxygen mask on before you assist anyone else with donning their own mask. Before your child, before your spouse, before the kind person seated next to you who needed assistance with their seat belt. You can't properly help another if you don't first help yourself.
How are you going to help all the people who need you if you end up with lingering fatigue, respiratory issues, anxiety and depression? How are you going to get all that shit done when it will be twice as hard to complete it? I keep repeating this to myself like a mantra.
I am one who has always pushed through the pain. I have an extremely high pain tolerance, it has been a source of pride most of my life. I also pride myself on my strong work ethic. I feel best when I am useful, productive, active. And long covid is the antithesis to all of this.
Thos who haven't experienced long covid don't get it. They think you're tired because you dropped your exercise routine, you're spending too much time sedentary, you need to get back out there. But there's a difference between being sedentary and the effects of long covid. And I know I need to keep reminding myself to listen to my body, not others. To trust my gut, to know that if I push through this I could set myself back.
As I hear more and more of my friends, neighbors, and colleagues get covid (it seems more lately than in the past year or so), I wish they don't experience what I did. But if they do, I hope they speak up. Because if we admit that covid isn't a walk in the park, that it isn't always over after a week, that maybe we can reduce the stigma and adjust our world to accommodate this new normal.
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Dear Allison,
I am truly sorry that you and your family have had to weather covid. My husband and I, our 42 year old daughter, and 11 year old grandson caught covid at a family Christmas Eve gathering last year. Up until that point we had dutifully worn masks everywhere and avoided movie theaters, restaurants, etc. Pretty much the only places my 72 year old husband and I went was the grocery store (me) and church (him). We and our daughter were vaccinated and boosted. Our 7 and 11 year old grandson had both had two vaccinations. The Christmas Eve party we attended was for family only. I said I thought we should wear our masks, but ultimately decided to do without. You know, peer pressure. No one else was wearing one and we knew that everyone at the gathering had been vaccinated except for a 4 month old infant. Sure enough, by December 28, half of the people who’d gone to the gathering had fallen ill. I think I know who shared the virus. We suspect it was a 20-something girlfriend of our grand nephew. She is a graduate student at a large university and therefore comes into contact with many people. She never had a single covid symptom, but the 50% of the party attendees who spent a lot of time talking with her fell ill. Those who didn’t spend time with her did not. I do not blame her for our family’s illness. We should have worn our masks.
I know for a fact that I was exposed to covid by my private students 5 times. The first exposure was in March 2020 when pretty much no one was wearing a mask. The other 4 times the students and I were masked. My 5 exposures were pre-Omicron. Omicron seems to be SO much more contagious! I hope that scientists soon figure out the human genetic component that allows some people to brew such a heavy viral load that they spread covid to everyone in their path yet have no symptoms and other people to become so sick that they end up in an ICU and die. Some people seem to be very resistant to catching covid at all. My 7 year old grandson lived with his mom and brother while they were sick with covid and did not contract it. He was also exposed by another child in his class at school on December 1. Five negative covid tests say he did not catch it. The fact that he had a very mild stomach virus the same week he was exposed by a classmate put off his 2nd covid shot. He was scheduled to receive it on December 4, but it had to be put off until December 21. This child had not had two full weeks after his 2nd shot for his immune system to ramp up before he went to our family party. Yet, he did not catch covid either at the Christmas Eve party or during the week and a half after when his mom and brother were ill.
I am currently torn about what to do vis a vis masks. My family and I stopped wearing them around March. We adults have all been vaccinated and double boosted and have had omicron. Supposedly our immunity is very high. I am no longer worried that I may contract covid again. I imagine I will weather it just like the first time. My family and I had what doctors call mild symptoms. Our symptoms were all from the neck up – no coughing. All of us had splitting sinus type headaches and fatigue for around 10 days to two weeks. I think that my daughter and I have mild long covid. We both want to sleep more than before we were sick and have less energy.
I do suspect that catching covid by walking through a grocery store aisle unmasked right after a contagious person coughs is unlikely. Significant exposure is supposed to be 15 minutes or more of close contact to a carrier. That is unlikely to happen in many public situations, like shopping at Walmart. We did go to a movie this summer and I had to sit next to a stranger. I masked. My conundrum is whether or not I am being rude by not masking up in public. I do not want an immuno-compromised individual to catch covid from me. However, I have not felt sick with anything since I caught covid at
Christmas. I will not go out at any time in the future if I feel ill. I realize that one can spread many viruses before symptoms set in. That’s why I had to quarantine for a week in October 2020 because I had been exposed to covid by a student. (I did not get sick on that occasion.) I feel I am not endangering others by going maskless in public. Some of my local public health officials agree with me. Almost no one in greater Cincinnati where I live wears a mask anymore. Transmission in the area is low. I feel, perhaps selfishly and wrongly, that I should not have to wear a mask to prevent the slight chance of an immunocompromised individual catching covid from quadruple-vaccinated and covid-recovered (mostly) me. I endured months of severe maskne from wearing a mask for several hours a day. I had painful cystic acne on my chin that, wouldn’t you know, cleared up completely when I stopped masking up! Yet, I still wonder if I am selfish to expect people who have an immune system disorder to stay home if they have grave health concerns. Groceries can be delivered. I have very little social life. I pretty much see my private students in my home (maskless) and I go to the grocery store and occasionally Goodwill. I am not galavanting around town. Yes, my students – both kids and adults – come into contact with many others and may bring covid into my music studio. All but one of my adult students has had covid and the majority of the kids have too. I hope that I am not being unreasonable in my behavior. I do not think that I am endangering others by any brief exposure to my breath they may have as I walk through Kroger. The people I feel who are selfish are the ones who refuse to get vaccinated! I will dutifully boost as required by health experts. I had my 2nd covid booster at the end of July and will line up for the Omicron specific booster at the end of January (6 months after the last booster).
Thank you for your honest take. We are in our 60’s and have been very careful. To a point where we feel we have exited society. With low transmission here (finally) we have gone maskless and eat in restaurants and attend small get togethers. We still mask in airports and on planes. I know this is risky. I wish there was more agreement on this and we could feel we were in this together.
Thank you for being so clear about your symptoms; my husband tested positive yesterday, and because he’s the first case in our household, I’m not sure what to expect, so your experience will be a good guide. I keep hearing the opposite trope that you have — that everyone’s had it already — which I guess is supposed to make it no big deal? As I said to my dad this morning when he said he hoped now my husband would be less “fearful” of Covid — the virus is as much a risk as ever — it’s just that the majority of people decided to stop caring about it.
I got COVID for the first time at the beginning of September. I am vaccinated and double boosted, so I know that helped me escape the worst of it, but what I had was still pretty bad. I continued to test positive for 2 solid weeks, but I would say that only 3-4 days were really non-functionally dreadful. However, even now, my brain still feels foggy. I am back at work and doing all of my usual tasks, but I am simultaneously exhausted and have insomnia. I average about 5 hours of sleep a night, and yet all I can think about is sleep. It is bizarre and a bit disheartening. I hope this is not the new normal for me.
I am so sorry your family got sick, and that you are having such a difficult time. My husband and I traveled to CA to visit family. We wore masks on the plane-only two other people had masks on, and no one in our hotel is masked. We get weird looks everywhere. I can’t fathom why so many people don’t take Covid seriously. Hope you can find healing soon.
Not at all my experience. I felt the opposite. I think by now almost Everyone, including Fauci, has bad it.
I have to wonder if anyone who still assigns blame is such a minute majority as to render them irrelevant and toxic to current science and culture ?
Thank you for this honest and real discussion of your experiences. I hope your Covid symptoms resolve as soon as possible and that work contacts and others extend you the grace we all deserve when we are ill for any reason. Love and healing to you and all others going through illnesses. And you are so right; there is no virtue here, only luck. My husband got his first case three weeks ago and I will shamefacedly admit my first thought was “Where did he get it?” And your point is spot-on “ANYWHERE!” It’s a respitory virus and it could literally be transmitted anywhere. Try to take time to rest and heal–we will all be here whenever you post!
I really appreciate this post Alison, especially your candidness on how bad some of the symptoms can be for some of us. I’m tired of people around me describing it as a bad cold or flu. No, covid is not through with us just yet. I hope you and your family continue to recover.
First, I’m glad your daughter bounced back so quickly and well from Covid.
Second, my heart sank for you the further I read in your post as you listed how the Covid jumped on you and sank its claws in so deeply and continues to pummel you.
Lastly, HUGE THANKS for taking your limited energy and brain power to tell us and help some of us be prepared and others of us to be validated and all of us to remember to extend grace and compassion.
The pandemic still rages on.
Thank you so much for this. It took me so long to admit to myself, my family, my doctors, and my job that I was struggling with covid for months after I was diagnosed. I was extremely lucky that when I finally opened up the support I got was entirely positive and helpful. My doctor was able to help with multiple of the lingering symptoms, especially the headaches and the new exercise induced asthma, and my boss allowed me to siesta whenever I needed it during the day. So much napping! Hope you get some relief soon and I hope that your message helps others through this tough experience.
I kept saying “uh huh and Amen sister!” as I read your story. The fatigue, the headaches and the weird-ass shooting pain in recently-injured places, like a finger I had broken eight weeks before I got COVID feeling like the day I fractured it. I personified the virus as this evil, vulnerability-seeking little monster.
We all need to give ourselves permission to take care of ourselves and have particular empathy for those who do not have that luxury and privilege. These are difficult times. Thanks for articulating it so well.
I did know about the long covid/being female correlation, but didn’t realize midlife was worse — I thought the relationship just increased over time (so as a woman, always a higher rate, and higher as you get older).
But this is what drives me nuts about epi’s and Biden who are all “let’s move on, act like normal” — we haven’t nailed down all the risk factors or the cost of the disabilities that come from long covid, we don’t have universal health care or time off, and even if covid isn’t severe enough to land you in the hospital it can be pretty freaking bad.
Knowing if I have all my jabs I won’t have a “severe” case does not comfort me because it’s not even certain that I wouldn’t and we are so not set up as a society or individually to actually manage covid.
Thank you for sharing, and I hope you continue to recover.
Also: I have found the substack of Katelyn Jetelina (yourlocalepidemiologist.substack.com) to be amazingly informative. She is a very excellent communicator of the science! I hope to be that good when I grow up.
Alison, sorry to hear of your continued struggles with Covid. Thank you for writing this—I feel it all so much! My immediate family of 3 managed to make it to May of this year & then I got it (I actually know exactly who I was exposed by & when; I was appreciative that she called me as soon as she tested +). Within 4-6 days of exposure, we all 3 tested positive & were quite sick. It’s hard to explain the fatigue to people who haven’t experienced it but you did such a good job. When I hear people make light of Covid, I am upset because it’s not “just a cold” & many people have truly miserable symptoms. My parents are in their 70’s and have not had it; no clue how they haven’t but hoping they continue to avoid it.
This sounds so rough. I hope for continued healing for you.
Ally, I am so sorry that you are going through this. Thank you for posting this thoughtful and cogent article about society’s attitude towards coved. I am so sick of hearing that the pandemic is over! I encourage your readers to share this article far and wide.
Dear Alison, I feel so bad for all you went through & are still going through. As I too grapple with Covid now at 73, I am so grateful for your article on your experience of what it can be like to live this. A rollercoaster. Amazing days & days that suck. I appreciate Deanna’s links as well for different health protocols & Farleigh’s reminder that you can get this more than once! Good idea to talk this up so we don’t get lax or think this is going to be easy. Take care! ❤️ Janet
Alison thank you for sharing your experience. I’m sorry that you, and your daughter are feeling stigmatized. It seems like all the people I know have the opposite reaction, it’s more like, oh so its finally your turn. Anyway I’m hoping that you continue to improve and that you feel better as time goes on
Alison, thank you for your thoughtful take on this sensitive issue. Your thoughts resonated with me. I’m at the top of my organization, don’t report to anybody, and yet when I got COVID in August 2021 the entirety of my self-care consisted of taking 4 hours off of work to go to the Instacare because my oxygen saturation had slipped into the 80s. I was fully vaccinated and boosters had not been offered yet, but 13 months later I’m still on two medications, one for tachycardia and one for high blood pressure. Both of these issues are as a direct result of COVID. And so I wonder: Could any of these long COVID symptoms been prevented had I taken better care of myself while I was sick? Did another mother in my organization push through COVID because of my bad example? Will it ever get better? Now I do all I can to support others who become ill, but the societal cost has already been enormous.
I just had to comment on your experiences — I wonder how long before — or even if –society will reflect your attitude and actions. I am so sorry that you are still ill, but I so admire your response on behalf of your employees.
Wonderful article! We also had Covid recently and we too had all our shots and boosters and regular flu vaccine – but we didn’t require hospitalization. We had many of the symptoms you described. And yes, we had became complacent in wearing our masks. Lesson learned and we are back to wearing mask in shops and back to taking food home from restaurants unless the business offers outdoor seating. Sincerely wishing you the best in your recovery.
I’m so sorry that you are having such a bad case. I had it in May, and I just did not seam to get over it and a coworker found this protocol, it really helped.
https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/
Wilson Wellness: https://drwilsonwellness.com/pages/infusion-therapy-3
Are we really spreading information about ivermectin in October of 2022???
Thanks for this post. I’m home sick with Covid for the second time and I feel so demoralized and angry. The second time is so much worse for me, and I know that I’ve got a long road ahead of me just to feel “normal.” I feel like hot trash, since my fever still hasn’t broken.
We need to speak openly about our struggles. I don’t know where I got Covid but I know that I’m double vaxxed and boosted and trying my best. That’s all we can do, with more grace for others and ourselves. I just wish society would do more to give us all a break during this ongoing pandemic.
Oh Alison! I am so sorry you’re going through this. I really appreciate your meaningful discussion of how it affected you, how it affects women in particular, and why we need to support people more effectively who are facing this. It needed to be said.