What COVID Long-Haulers Can Learn From the Chronic Community
The coronavirus is causing long-term symptoms in some people. Those who live with autoimmune and other health disorders have wisdom to share.
Christina Stanton was on a bike ride with a friend last August when she couldn’t pedal another inch. “I got off and I laid in the grass,” she says. Stanton, 51, of New York City, was experiencing “incredible fatigue,” she recalls, the remnants of a COVID infection that began for her in March 2020 and never stopped. “It was right outside of this nasty industrial area. I could tell it scared [my friend] that I was doing that, laying in some gross grass behind an old nasty warehouse, because, literally, I couldn’t go.”
Lisa Emrich, a total stranger to Stanton, says she understands. Emrich, 52, of Falls Church, VA, has grappled with chronic illnesses for years, including both multiple sclerosis (MS) and rheumatoid arthritis (RA). An avid bicyclist herself, Emrich (who has never had COVID symptoms) remembers a time not too long ago when she was out on her bike just three miles from home but became too exhausted to complete the journey. She, too, got off her bike and watched as her husband cycled home ahead of her, got their car, and returned to take her home, her bicycle strapped to the rooftop rack.
Crushing fatigue is just one common denominator between COVID and the chronic community. A year into the pandemic—and 25.8 million documented cases with 510,000 deaths in the U.S. later—health and policy leaders are coming to terms with the likelihood that COVID is here to stay, and not just as an infection that rears its ugly head during certain peak seasons, tempered only by social distancing, face masks, and vaccinations.
Joint and muscle pain, GI issues, anxiety and depression, brain fog, shortness of breath, and heart problems have also been documented in a growing subset of COVID patients who are known as “long-haulers” in popular media. Such symptoms can continue to show up weeks to many months after an initial COVID infection. They have been acknowledged by The National Institute of Allergy and Infectious Diseases Director Anthony Fauci, M.D., who estimates that 25% to 35% of people with COVID experience what is officially called post-acute sequelae of COVID-19 (PASC) by the medical community. (The patient community prefers long-haulers, long COVID or long-term COVID.) Currently, there is no cure for long-term COVID, though many of its symptoms can be treated individually. For people who have it, COVID feels very much like a chronic condition.
So, where does that leave long-haulers, many of whom were previously healthy adults who now face an uncertain future of physical limitations, discomfort, anxiety, and even fear? Where should they turn to for advice, when their own doctors are often left scratching their heads about how best to move forward? Members of the chronic community—folks with autoimmune disorders and other lifelong health conditions, as well as those who medically treat them—have plenty to say.
Learn to Manage Debilitating Fatigue
If you have long-term COVID, finding ways to adapt to new limitations is key, says Kate Lorig, Dr.P.H., a professor of medicine (immunology and rheumatology) emerita at Stanford University and a partner in the Self-Management Resource Center in Aptos, CA. Lorig co-authored a book called Living a Healthy Life with Chronic Conditions, which outlines how fatigue plays a central role in chronic illness.
“If fatigue is a major problem, then [long-haulers] may have to sleep a whole lot more, or they may have to pace their activities more,” she says. “If they were marathon runners, they may not be able to run marathons, at least not right now. But that doesn’t mean they can’t start by walking around the block. And then walking around two blocks, and building back up exercise capacity again.”
It might seem obvious, but getting as much sleep as you need is vital for handling fatigue with long-term COVID, says Christian Sandrock, M.D., an infectious disease and critical care physician at the University of California, Davis.
That’s what Jesse Kadekawa Miguel, 61, of Shawnee, KS, has been doing. He was sick last March with COVID, fighting a high fever for days, plus persistent cough, sore throat, fatigue, and changes to taste. (“Everything was salty,” he recalls.) As a long-hauler, he’s experienced chest pains, worsened tinnitus, and more fatigue. An architect by day and cyclist on a local team by evening and weekends, Miguel is so exhausted some days that he can only do one thing: Nap.
It usually hits him after dinner, he says. “I have to go take a nap for an hour, maybe two, and then I’ll get up [because] I still have some work I have to do.”
Miguel has the right idea, says Dr. Sandrock, who explains that with COVID, exhaustion can be due to blood flow limitations and low oxygen levels, and trying to chase it away by doubling down on exercise could—potentially—have negative long-term effects.
“So we’re telling you, number one, get the rest you need,” Dr. Sandrock advises. Then, when you feel rested enough to exercise again, it’s vital to go easy at times: “Don’t push yourself to the point where your heart rate is too high, and if you have pain, don’t suck it up and push through the pain,” he adds. “When you look at getting better, don’t look at it as a day-to-day thing like you would with a cold. It’s not going be that clean [with COVID]. It’s more like, you look back three months and say, ‘OK, where was I three months ago?’ Because your symptoms take a few steps forward, and then a few steps back.”
Eileen Davidson, 35, of Vancouver, Canada, was diagnosed with rheumatoid arthritis (RA) at age 29, and has osteoarthritis (OA), too, which causes joint aches and pains, just like those the long-term COVID community might experience. For her, fatigue is a huge challenge; she describes it as “unrelenting and unpredictable.” She says that identifying her triggers—including sugar, alcohol, too much rest, and not enough rest and overdoing it, all of which she’s had to learn how to balance—has been game-changing in terms of maintaining her energy levels.
That’s been the case for Emrich, too. Fatigue is one of the most common symptoms in MS, occurring in about 80% of people with the condition. Called lassitude or MS fatigue, its hallmarks include fatigue that comes on suddenly, worsens as the day goes on, and presents daily—the kind of bone-weariness where you’re lying on the couch watching TV but can’t even move to press the channel button on the remote to watch a new show.
“Unless you’ve experienced it, it’s hard to understand,” Emrich says. “So, the people around you maybe might presume that you’re just being lazy... What they think you might be experiencing is so different than what you are.”
The best thing she can do for herself in those tiring moments? Allow herself to stop and rest. “That’s something that I’ve had to learn over the years with MS,” she says. “Sometimes, the best thing to do for yourself is to give yourself permission not to do anything.”
Help Relieve Joint and Muscle Pain
Another one of long-term COVID’s symptoms is joint pain and muscle aches, according to published data. Both still impact Caitlin Houston, 35, of Wallingford, CT, a year out from her positive COVID test, even after her initial symptoms of fever, headache, sore throat, and dry cough resolved. “My body [hurts] at the end of the day, like I’ve done so much work—and I’ve done nothing,” she says. She does hot yoga several times a week, which helps, she adds, but it’s still hard being in her mid-30s and feeling like “an old lady” on many days.
For Davidson (with RA and OA), that pain is all too familiar. “Motion is lotion when it comes to any form of arthritis,” she points out. Echoing advice from Lorig’s book, she emphasizes the importance of working out and moving your body. (“Regular exercise is crucial to the management of all types of chronic arthritis,” Lorig and her co-authors write). And it helps “tremendously” with OA pain, Davidson says. Still, “it took a physiotherapist trained in arthritis care to help guide me on how to properly exercise with OA, [plus] some tips on how to alleviate OA pain with exercise.” She says that finding the right physical therapist or personal trainer with experience in chronic pain and illness is vital. “Talk to your doctor about it if you are struggling with daily life because of the pain,” she adds.
Get Ahead of GI Issues
Stanton ended up in the hospital during her COVID-19 acute illness, experiencing intense and debilitating GI symptoms. Some studies have shown that as many as 50% of COVID patients have digestive symptoms, including diarrhea, nausea, vomiting, abdominal pain, lack of appetite, indigestion, and reflux, making it one of the hallmark heath issues of the virus.
They can happen when you first have COVID symptoms and continue for months, says David M. Poppers, M.D., a gastroenterologist, clinical professor at the Department of Medicine at NYU Grossman School of Medicine, and director of the GI Quality and Strategic Initiatives, Center for Women's Health and Center for Men’s Health at NYU Langone Health in New York City.
“The gastrointestinal system is a portal of entry for infections,” he explains. One of the reasons why the GI tract is possibly so impacted by COVID-19, he says, is because of how COVID enters our cells—with the (unintentional) help of something called ACE2 (angiotensin-converting enzyme 2 receptor). Its role is complicated, but basically it’s a force for good in the body’s vascular system—until you get COVID. The virus then attaches itself to this receptor, found in cells in the lower respiratory and GI tracts. Once COVID gains entry into those cells, the virus replicates, triggering the next step in our body’s fight against the infection, he explains.
“It activates this severe inflammatory response which, when it’s in the lungs, can lead to anything from mild to life-threatening respiratory illness and respiratory failure. And, then, in the gastrointestinal tract, can lead to all of the different symptoms,” Dr. Poppers points out.
Larry Ross, 36, of Bessemer, AL, understands these symptoms all too well. Diagnosed with Crohn’s disease, an inflammatory bowel disorder, at age 12, Ross knows what it’s like to spend hours—days, even—on the toilet, and seeing life pass by while dealing with difficult gastro issues that so many people with COVID continue to battle after an acute infection.
Ross, who uses the pronouns they and them, regularly experiences diarrhea, bloating, cramping, blood in the stool, gas, indigestion, fatigue, and depression. To keep such ailments at bay, they make it a priority to rest, use digestive enzymes, eat a low-residue diet, and maintain a strong support system for when flares happen. “The diet and enzymes settle the cramping and bloating, and help break down food,” Ross explains, while the support network offers help when needed.
It's likely that Ross contracted COVID-19 on a business trip in early 2020. The resulting illness caused a horrific Crohn’s flare, as well as long-hauler symptoms including altered sense of taste, smell, and even sight. But getting the virus also provided a chance to reflect on life and its direction. “Having a chronic illness means you have to be your own best friend,” says Ross, who adds that with so many people out there walking a similar path, you’re not truly alone. “And you’re going to be OK.”
Conquer Anxiety and Low Mood
Anxiety and depression can often go hand-in-hand with established chronic conditions, and many COVID long-haulers are battling both. For Houston, anxiety hit hard. “I was told by my primary care physician that I was experiencing PTSD from being sick for almost three months,” she says. “I started speaking to a therapist a few weeks after finally testing negative for the virus, who has helped me through some tough times.”
Davidson is all too familiar with anxious thinking. “RA is also a systemic autoimmune disease, so it doesn’t just affect the joints, but also organs such as the heart, lung, brains, eyes, skin,” she points out. Knowing how damaging her condition can be can actually contribute to her general anxiety levels, she adds, because she never knows when it might worsen, affect some other area of her body, or just cause an exhausting flare.
“When I had a panic attack that landed me in the ER, I knew it was time to seek the appropriate care and develop the self-management tools I needed to control my anxiety,” she says. She now works with a psychiatrist, her primary care doctor, and a clinician social worker. After few trials of different medications, “I’ve been really able to calm the anxious storm I started out with.”
She suggests that long-haulers help calm their minds by tracking their health and symptoms with a journal or app, engaging in an open dialogue with their doctors, and taking part in research, “because that’s where answers lie.” Also? “Finding a community for your illness can go a long way toward helping,” she adds.
On that point, Lorig firmly agrees, suggesting programs and workshops, available through her own work in the chronic illness space (as well as these resources for additional info). “One of the things that I advise people to do is social networking,” she says. “For people with chronic illness, on a daily basis the diseases are different. But what they have to do to live with the diseases are pretty much the same.”
Best Brain Fog
Cognition problems are common with chronic conditions like MS, occurring in more half of those with this condition, per the National Multiple Sclerosis Society. This includes what’s known as brain fog—or cog fog, as it’s sometimes called in the MS community—which refers to issues with memory, information processing, attention, and concentration.
When it comes to COVID, we’re not exactly sure why brain fog is being reported so frequently, Dr. Sandrock says. But a study published in JAMA Neurology in February 2021 offers a clue: It revealed that highly unusual cell clusters—called megakaryocytes—were found in the brains of one-third of deceased, autopsied COVID patients. A megakaryocyte usually lives in bone marrow, not the brain, making platelets to help blood clot. Researchers can't say why such cell clusters were detected in the brain but theorize their presence may be contributing to common long-haul cognition problems.
Another study reported that brain fog—also known as being cognitively impaired—has a significant burden in RA, too. Emrich (with MS and RA) says often struggles with concentration, so she does the same thing she does to tackle fatigue: She rests. Davidson handles brain cog from RA (and recommends COVID long-haulers consider doing the same) by practicing the following coping hacks:
Write everything down.
Keep usual times and days for appointments so you don’t forget them, or can plan around them easier.
Ask people to remind you about important things you may forget.
View brain fog as a sign to slow down and rest.
Take cat naps whenever possible if you can’t slow down, for whatever reason.
Stay hydrated with water and/or green tea.
Get some fresh air—it helps!
Coping With Chronic Life
Learning to live with COVID symptoms that don’t seem to stop has been an unsettling experience for many. But like most who live with chronic conditions, COVID long-haulers are finding ways to adapt. Take Houston, who runs a lifestyle blog where she writes about her experience. She also dances, paints, and does positive self-talk to help.
“COVID changed me,” she admits. “Having it taught me to appreciate life more than I ever have. It pushed me to go into therapy, and I’ve had a whole new awakening about mental health. And, I’ve been able to help other people because of it. I’ve had so many people message me to thank me for telling my story. It was something that really sucked, but there’s a silver lining to it—at least I’m not alone. You know, there are other people out there going through stuff like this.”
Those “other people” may well be members of the chronic community, like Emrich, Davidson, and Ross, who are old hat at trotting out—and offering—coping tools. “The best thing you can do is be open and communicate what is going on with you,” Davidson says. Also, avoid comparing your current health status with how you felt a year ago, or to others with same diagnosis. “It is different for everyone,” adds Ross, who practices meditation and “embodiment,” a.k.a., sitting with her symptoms and accepting them.
If stress over your situation starts to feel overwhelming, healthy distractions like coloring, crafting, watching movies, doing video calls with friends, or just curling up with a book can all be effective ways to self-soothe. And while you might not be able to return to your former high-energy job right away, there’s never been a better time to explore WFH options. “I created a work-from-home business because having a ‘normal’ job just isn’t in the cards for me,” Ross says.
However you handle the lingering effects of the coronavirus, remember that it’s still better than the alternative. Miguel says he feels “lucky” to be living with long-term COVID symptoms, given how many others have lost their lives, or a loved one, during the pandemic. Chronic symptoms offer big new challenges, definitely. But there’s also more life to be had.
Possible Amount of Long-term COVID Cases: American Medical Association. (2020.) “Dr. Fauci offers 2021 forecast on COVID-19 vaccines, treatments.” ama-assn.org/delivering-care/public-health/dr-fauci-offers-2021-forecast-covid-19-vaccines-treatments
Fatigue and MS: National Multiple Sclerosis Society. (n.d.) “Fatigue.” nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Fatigue
Fatigue and Chronic Illness: Bull Publishing Company. (2020.) “Living a Healthy Life with Chronic Conditions, 5th Edition. Self-Management Skills for Heart Disease, Arthritis, Diabetes, Depression, Asthma, Bronchitis, Emphysema and Other Physical and Mental Health Conditions.” bullpub.com/living-a-healthy-life-with-chronic-conditions-5th-edition.html
Joint and Muscle Pain with COVID: British Journal of Anaesthesia. (October 2020.) “Chronic pain after COVID-19: implications for rehabilitation.” ncbi.nlm.nih.gov/pmc/articles/PMC7261464/
Explaining ACE2: Critical Care. (July 13, 2020.) “Role of angiotensin-converting enzyme 2 (ACE2) in COVID-19.” ccforum.biomedcentral.com/articles/10.1186/s13054-020-03120-0
Cog Fog and MS: National Multiple Sclerosis Society. (n.d.) “Cognitive Changes.” nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Cognitive-Changes
Finding Megakaryocytes in the Wrong Place: JAMA Neurology. (February 12, 2021.) “Assessing Brain Capillaries in Coronavirus Disease 2019.” jamanetwork.com/journals/jamaneurology/fullarticle/2776455
Brain Fog and RA: Arthritis Care & Research. (August 2012.) “Cognitive Impairment in Persons With Rheumatoid Arthritis.” ncbi.nlm.nih.gov/pmc/articles/PMC3744877/