I recently passed my 100th day of dealing with COVID-19 symptoms and I’m not sure whether to laugh or cry. The last few months have been a crazy roller coaster of extreme symptoms and I’m thankful to be alive but I’m still absolutely exhausted. It turns out I’m one of the thousands of “Long-Haulers” whose bodies just can’t kick the effects of the virus for a yet-to-be-discovered reason. My rotating cast of symptoms includes a deep cough, insomnia, shortness of breath, brain fog, upper body rash, headaches, cold sores, GI issues, erratic heartbeat, chest pain, covid tongue, muscle aches, stabbing heart pain, dizziness, and I could go on and on.
If it’s been more than two weeks and you’re still experiencing COVID-19 symptoms, I’m so sorry. You probably didn’t expect to be sick for this long, and you’re not crazy! While the media has recently begun reporting more and more experiences of COVID “long-haulers,” if you’re like me you probably didn’t know it was fairly common for people to experience symptoms for longer than two weeks. While it's still too early for a definitive number, some studies are showing that 10% - 20% of people with mild COVID-19 cases and nearly everyone who needs to be hospitalized will still be experiencing symptoms after four weeks. I’ve heard from doctors who think that it’s actually more common for people to still have one or more symptoms after a month than it is for people to recover quickly. I know that sounds daunting but no need to panic! However long your healing journey may take, I hope these encouragements, reflections, and tips will help you hang in there.
So many others are on this journey with you. Over the last few months, literally thousands of facebook groups have been created for COVID-19 recoverers (my personal favorites: BodyPolitic, Long Haul Covid Fighters, and Survivor Corps). It’s been a great help to be able to ask questions and read stories of others whose symptoms match mine. Since I have no pre-existing conditions and had never even been to the hospital, it’s helped knowing that I don’t need to suffer alone at home but can go to the ER whenever anything gets too intense. Thankfully I haven’t needed to be admitted, but I’ve spent time in the ER on several occasions in the last few months. I don’t expect doctors to know yet why COVID is affecting certain areas of my body, but it’s helpful to rule out major issues, which at this point are mainly blood clots and stroke. For many of my other symptoms, I’ve turned to the groups first for advice and then request specific meds from my doctor.
Tip #1: If you wonder if you need to go to the ER, call your doctor or just go ahead and go! They might not know exactly what to do for you, but there's no need to suffer alone at home.
Tip #2: Use online support groups as resources, but don’t forget to schedule intentional breaks from researching to avoid tunnel vision (literally and figuratively).
You are your own best advocate. Decide what level of diagnosis is important to you and request testing as needed. Personally, unless a symptom feels unmanageable, I have chosen to wait a little longer for additional scans/testing until more information is widely understood by the medical community. It can be so hard not to have a definitive diagnosis or a solid recovery plan, but it’s just going to take more time for science to catch up. What we know about COVID-19 has come so far in the last few months and I trust that new discoveries are on the horizon. So in the meantime, I’m staying up to date on current studies, especially any information coming from New York's Mt. Sinai Post-COVID Care Center. One of their doctors has been holding a weekly Q&A session for long-haulers, keeping us informed about their research and diagnostic theories (past sessions available in any of the support groups linked here). I’m hopeful that more of these COVID centers will pop up in the coming months!
Tip #3: Keep a log or spreadsheet of your symptoms. I also created some simple graphs in Excel that help me see the severity of my most prevalent symptoms over time. I’ve found it helpful to see it all written down and to have something tangible to take to doctor appointments.
Many doctors don’t understand how to treat COVID-19 yet (and may not admit it). Everyone’s scrambling to understand this totally new virus, doctors included. When faced with the unknown, we all react in different ways. Some doctors respond with genuine care and humility, and others....do not. If you have a particularly discouraging appointment (“It’s just anxiety,” “Oh, COVID definitely doesn’t last this long,” “Nothing showed up on your scan, you’re perfectly healthy”), come vent to the group! We all have stories to share (like that one ER doctor who took me from an ambulance stretcher to a plastic chair in the COVID-19 tent and wouldn’t let me lay down despite being in the worst pain of my life, and I don’t say that lightly. After a few hours of meds and tests, the doctor came back and said flatly, “Oh, I see you’ve stopped hyperventilating now...would you like to lay down?”)
Tip #4: I heard from a doctor who contracted COVID herself that referring to this experience as “a virus” rather than “COVID-19” might help dismissive doctors take us more seriously. It’s harder to write-off “I had a bad virus in March and now I’m experiencing __” than if I start with explaining that I’ve had COVID symptoms for four months. Not a long-term solution, but it may be helpful when requesting specific testing.
Your weirdest symptoms are probably normal. For a solid week I was convinced there was rotting trash hiding somewhere in my house. Some people lose their sense of smell entirely, but I was continually smelling a strong musty, metallic trash odor. Despite being super tired, I pulled out my Clorox wipes, cleaned out the fridge, did all my laundry, and even took an extra shower to no avail. When I described what I was smelling in a support group post, many others wrote that they were experiencing that exact same thing and had also searched their homes for it. Turns out the virus has an actual smell, one that dogs are being trained to sniff out. I think I was smelling my own self (!), which thankfully is only still bad on my worst symptom days. I am choosing to view this as a superpower since I could probably smell your bedroom and tell you if you have the coronavirus. But please don’t ask me to! Now, whenever a new weird symptom pops up, I just search in the groups and see how others are dealing with it (burning white tongue and upper body rash was this week).
Tip #5: Try to think about your symptoms proactively. Instead of panicking when daily new symptoms arrive, I like to view my journey as part of world-wide scientific discovery. There are plenty of online studies you can participate in (just search in the support groups) that want to hear about every symptom you’ve ever had which is both validating personally and helpful for COVID-19 research. (I recently played 12 memory games that I will repeat several more times to help track cognitive function and memory loss related to COVID—let’s just say, I was humbled!)
Acknowledge your emotions, but don’t take yourself too seriously. One of the many odd effects of this virus is that it can cause your central nervous system to be out of whack (doctors have started diagnosing some long-haulers with "dysautonomia”). I feel continual chest/throat pressure, whenever I stand or walk my heart rate skyrockets (the effects of “POTS”), I have nausea that comes and goes, and I sweat at random times. You know what all of this together feels like? Anxiety. My body is acting like it does when I’m anxious, even when I’m not feeling anxious at all, which makes it hard to know which emotions I’m actually feeling. And it’s the same with sadness—so many people who describe themselves as non-criers have reported an unusual amount of crying and depression. For me, it was about eight weeks in, when all of a sudden I went from feeling totally fine to the crying at commercials level of sadness. I’m convinced there is something physically going on that’s leading to the tears (thyroid issues? brain inflammation? PBA?), but of course there are times when I am actually sad as well. We’re living through a pandemic for goodness sake, and everyone’s emotions are heightened! So for me it has been helpful to take a light-hearted approach to my emotions by acknowledging what I’m feeling but giving myself permission to not have to figure it out. I cry when I feel like it (but not too much because I hate a stuffy nose), spend a week at my parents’ when I’m feeling particularly isolated, and am not allowing myself to make any major life decisions until my symptoms calm down (who am I kidding, I’m too exhausted for that anyway!).
Tip #6: When you have the energy, try to name what you’re feeling. Give yourself permission to feel those things, but also remember that what you’re experiencing emotionally may be due to what’s going on physically. And it’s okay if you’re still too close to the journey to have a clear perspective.
Be flexible with your expectations. When I was first diagnosed with COVID-19, I was planning week-to-week. I canceled work for two weeks, cleared my schedule, and expected to get over it quickly—I’m young and otherwise healthy, it’ll be no big deal, right? Whoops. Now, 100+ days later, I’m loosely planning month-to-month. I am so grateful for the extreme flexibility of my work and school and I realize not everyone can afford to not work, but we need to acknowledge that a significant number of people who get COVID will be severely limited for months at a time. The extreme fatigue/brain fog/insomnia combo is unlike anything I’ve ever experienced. I seem to have a daily limit of focused brain energy (some days it’s ten minutes, other days a few hours), and once it’s used up, even simple conversations can be too much; my tongue feels swollen, I forget basic words, and sometimes I just can’t finish my sentences. I wrote my last post after about five weeks of symptoms, just before the brain fog settled in, and it took me four hours. This post has taken three weeks! I’ve never gone this long without doing, but my body and brain just cannot do much yet. Expect that your journey towards healing may be much longer that you initially thought, and this is not a season for making any concrete plans.
Tip #7: As much as possible, postpone what you can for as long as you can. Remember that much of the world has also pressed ‘pause’ for the pandemic that you have.
Rest, rest, rest. Affectionately known by fellow long-haulers as, “The Corona-coaster,” COVID-19 is the strangest illness I have ever experienced because of its continuously cycling symptoms. For the first three months my symptoms generally followed a pattern of three bad weeks/several days of false hope/total relapse. Now my symptoms follow more of a daily rhythm. I typically wake up with an exhaustion that only lifts after 11pm (?!) and with a seemingly random sampling of the 30+ symptoms that may be totally different from the day before. Every day feels like a game show: “Let’s do ‘Mystery Pain in an Underappreciated Organ’ for $200 please!” But I’ve also had a few “good” days scattered throughout this month, for which I’ve done nothing differently to warrant the change. While there doesn’t seem to be any obvious reason why some days are better than others, a universal COVID truth is this: overexertion = relapse. Last month I tried to start taking a few short walks and incrementally increasing the time by one minute. After less than a week, I had a total symptom relapse. A little bit later I tried gentle yoga—we’re talking yoga your great-grandma could ace. After two nights of that, I had shooting nerve pain down both legs. While I’ll still periodically check my exercise tolerance, I’ve come to accept that this year is a year for healing, not a year to care about my physique.
Tip #8: You’ll need to adopt a new, lower threshold definition for ‘overexertion’. It’s tempting to feel shame or guilt for time spent in bed or on the couch, but your body is doing a LOT of work to keep you alive, and that is enough for right now. Enjoy Netflix, sleep whenever you can, and rest like it’s your job!
Extend grace to friends who don’t reach out (or say the wrong things or treat you like a contagion instead of a friend). This isn’t a time to test friendships or decide who your real friends are based on their response to you. We’re in the midst of a pandemic and everyone is living under a new set of stressors whether they realize it or not. Some friends will want to keep their distance even after you’ve been cleared by your doctor. This is both totally understandable and also a little hurtful. But it helps to remember that no one’s an expert at these new social norms, and it’s likely that insensitive people are acting from a place of fear. Science can’t answer some very basic questions yet (see below) so social decision making is just going to be awkward at times.
Tip #9: Don’t be too quick to unfriend anti-maskers or conspiracy theorists who don’t have first-hand experience with the debilitating nature of this virus. For so many people, unless they experience how horrible this is first hand, they just can’t be persuaded to take precautions. Share your story if you have energy; mute or scroll past if you don’t. One day they may need to turn to you for help.
Yes, even COVID can be used for good. I’m not a fan of jumping quickly to platitudes like, “Just look on the bright side” or finding things to be thankful for without acknowledging the pain in a given situation. I plan on seeing a therapist to help unpack the weight of the last few months just as soon as longer conversations don’t land me in bed for a few days. But throughout this COVID journey I’ve been struck with what a unique privilege it is to get a glimpse into the lives of chronic illness sufferers. Many (most?) of COVID-19 long-haulers seem to be like me: young-ish, otherwise healthy individuals, with little-to-no background of serious illness. I’ve never given much thought to the mostly invisible chronic illnesses before, but since having COVID my eyes have been opened! This experience is going to make me a better friend and more empathetic counselor and I am so grateful for that. I am also getting to see how the painful journey of my brother’s rare brain cancer diagnosis several years ago has prepared me to calmly face so many COVID unknowns. I’m being reminded that God loves redeeming our painful experiences and using them for our good and the good of others, and COVID is no exception. Because the COVID recovery has so many similarities to CFS, ME, Chronic Lyme, and other often-misunderstood autoimmune diseases, I’m hopeful that all the attention and research going into COVID-19 will lead to some breakthroughs for these other illnesses. Wouldn’t it be just like God to use the fallout from a pandemic to bring healing to many?
Tip #10: Take time to grieve and process your COVID-related losses. Also consider the unexpected ways that having this virus has impacted you positively. What things are you thankful for that you wouldn’t have noticed otherwise? In what ways can you imagine good coming from your experience?
BONUS— Practical items to have on hand: Whether you’re recently diagnosed or just wanting to be prepared, here are some things I’ve encouraged my family members to add to their medicine cabinets (and obviously check with your doctor before taking any medication):
Oximeter to measure blood oxygen levels which will help determine when to go to the ER
Thermometer for each family member to limit germ spread
Electrolyte packets like Pedialyte or Gatorade, especially helpful for the early days
Sleep aids like Melatonin, CBD oil, and Benadryl (which is also helpful to calm your immune system’s response when in overdrive)
Baby aspirin to help prevent blood clotting (COVID-19 is known to cause blood thickening)
Cold and Flu meds such as Mucinex or Dayquil
Daily multivitamins* with high vitamin C, D, and zinc content
Toilet wipes or Prep H wipes (COVID-19 can cause a lot of GI issues and you may be spending excess time in the bathroom. Not to be too up close and personal, but I have a Tushie and cannot say enough good things about it. Blame it on my European influence!)
*A note about supplements: there is a wealth of knowledge in the support groups on supplements to take/not take, and I’d encourage you to research for yourself. My current thinking is that because COVID seems to be causing cytokine storms, I don’t want to activate my immune system any more than it already is, so I’m limiting my intake to regular multivitamins. But that’s coming from someone who’s lucky to remember to take her gummy vitamins pre-COVID, so if supplements are your thing, go for it!
BONUS— COVID-19 questions that science can’t answer yet: The answer to all of these questions is, "We don't know," but I'll share my best educated guesses and will periodically add links to articles with the latest theories. Don't take my word for it!
How long is someone contagious? Probably for only the first 11 days, with peak levels of contagiousness around days 4-5 (see Mt. Sinai Q&A). After that, symptoms (including fevers) may be attributed to an overactive immune system response. Some people still do test positive after 40+ days, but they are not thought to be shedding active virus. I self-isolated for the first two months and then felt comfortable seeing family members after much research and testing negative. No one I've been in contact with has shown any signs of sickness and those who have since been tested for job purposes have tested negative.
How long does immunity last? There have been a few media-reported cases of re-infection, but I'm guessing it's actually a relapse of the original infection because of how COVID seems to act in waves. If someone reports a reinfection after 6 months or longer, I'd be more inclined to believe it's a second infection given the time difference. I'm going to live as if I have no immunity and can catch it again. This means masks and social distancing for me!
Why are so many people testing negative despite having symptoms? I'm thankful that the current testing is able to catch so many positive cases, but accuracy has shown to be abysmal (30% false negatives) and I'm not sure we're even targeting the right things yet. I think we need to rely much more on symptom diagnosis than on tests. Did you know that less than half of us get fevers? So much for temperature scans...
Is the virus active in long-haulers? Probably not. But why do some people experience such strong relapses month after month? It seems way too intense to be attributed solely to post-viral fatigue. Dysautonomia is one popular diagnosis theory given the autonomic nervous system's response to the virus.
Why are only 20% of long-haulers testing positive for antibodies? No clue!
What is the common denominator that makes long-haulers sick for so long? Many of us just don't produce antibodies and it doesn't seem to be related to blood type or any other already suggested commonality.
What are the long-term effects on our bodies? Not sure, but I'm living with the mentality that my body will heal eventually while I also wouldn't be surprised if there is some long-term heart and/or lung damage.
Can you catch multiple COVID-19 strains? I wouldn't be surprised, although T-cells may hold the key for immunity in non-antibody producing people.
What about this latest conspiracy theor- We don't even care. Trust me, if you get this sick for this long, the last thing you have energy for is political drama! I think most humans are attracted to conspiracy theories because living with the unknown is hard. We want to know why, but that's not always for us to know. I believe we also have a God-given sense that something is going on behind the scenes and we can choose to search for the corruption or the beauty. Both are necessary to expose, but let's err on the side of beauty.
If you're still reading, I hope my simple reflections on these last few months have been helpful to you. To anyone who's newly on this long-haul journey, I hope you feel that you're not alone, you're not crazy, and you can make it through this season. I'm so thankful for my incredibly supportive family and friends who have tracked with me through it all—I would be in a much different place without you!