The People Who Care for Covid-19 Long-HaulersHow relationships are tested and strengthened over the course of the pandemic
When people ask how Sunik and I got through Covid-19 together, I usually start by talking about the hospital chair. It was more of a stool really — backless, with wheels that didn’t seem to lock, and Sunik, my partner of five years, sat in it for 10 hours straight while I lay nearby waiting to be hospitalized. I remember, between short bouts of sleep and visits from hospital staff, opening my eyes to see Sunik sitting on that stool, all night long. I remember them leaning against the cement wall and nodding off only to be awakened by the stool slipping away from the wall yet again. I think I often talk about the stool because it came to represent a lot for me — the overwhelmed health care system that couldn’t accommodate us, the precarious and uncomfortable nature of that night, and most of all, Sunik’s devoted care for me.
My first Covid-19 symptoms appeared on March 13. By March 16, I was too short of breath to walk or speak. Sunik gave me a write-on-wipe-off board, and I used it to detail my symptoms as Sunik spoke on the phone with my doctor. Sunik packed spare underwear and a phone charger in my backpack. Sunik wrapped a T-shirt around my face and held me up on the walk from the car to Mount Sinai’s door. And then, about four hours into our wait, Sunik developed a fever of 102.2 degrees but was refused a Covid test based on the eligibility requirements at that time. Six hours later, I was hospitalized, and Sunik was sent home alone with no one to sit by their side.
Covid-19 has created a health care crisis, perhaps most evident in the stories of patients lining hospital hallways, staffing and equipment shortages, and refrigerated trucks holding bodies. But there’s another hidden crisis taking place within private homes. Many patients who sought care after I did and were turned away due to overwhelmed hospital systems that could not accommodate the surge plus people returning home after hospitalization have had to manage the long road to recovery alone.
A U.S. Centers for Disease Control and Prevention (CDC) survey from July found that 35% of nonhospitalized patients were still reporting symptoms after three weeks, and an Italian study found that 87% of hospitalized patients still had symptoms 60 days after their onset. These patients, who are sometimes referred to as “long-haulers” or people with “long Covid,” often deal with debilitating symptoms that make it impossible to care for themselves.
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I know this firsthand. In late March, when Sunik began to recover from their case of Covid-19, I still wasn’t getting better. I needed Sunik to prepare my food, make sure I didn’t fall in the shower, and handle our household chores. When I began to connect with other long Covid patients online, I realized these experiences were not unique, yet few people were talking about long-haulers, and even fewer were talking about the people taking care of us.
Maybe that’s in part because society doesn’t always recognize caregivers. According to Susannah Fox, a health and technology expert, caregivers often don’t even recognize themselves as caregivers. Fox says that while most people are likely to be caregivers at least once in their lives, even those who answer “yes” to a variety of questions related to providing care are reluctant to actually claim the title of “caregiver.” Fox and other experts believe it’s important for caregivers to recognize themselves and to be recognized by others so that caregivers can connect with one another more easily and feel pride in the acknowledgment of their work. Alexandra Drane, the founder of Archangels, an organization seeking to reframe how caregivers are perceived, argues that “when given the chance to be seen, when acknowledged for the great honor of what they do, caregivers feel incredible purpose.”
“It’s not socially acceptable to be angry at the person who’s sick.”
Sunik did not feel incredible purpose. Instead, they felt overwhelmed, frustrated, and anxious. “I felt shame about feeling annoyed by the burden,” Sunik told me. “I didn’t want to talk to anyone about it. … It makes you feel like a bad person.”
Fox says these feelings are common. “It’s not socially acceptable to be angry at the person who’s sick,” she explained. Drane agreed but argues that “shame is just a conversation waiting to be had.” Drane’s words resonated with me, so I set out to have those conversations with Covid patients and the loved ones who have cared for them.
When Juanita Najarro, a 55-year-old in Sun Valley, California, invited her daughter Nataly, 24, to move in with her, Juanita was thinking of herself not as a caregiver but as a mother. “It’s our duty,” Juanita says she told Nataly, who got Covid-19 in June and still deals with extreme fatigue, brain fog, and fainting among other persistent symptoms. “Not your friend, not your roommate. It’s our duty as your parents.”
Drane explained that many caregivers see themselves this way: “I’m not a caregiver; I’m just a son, I’m just a partner, I’m just a neighbor.” It makes sense that caregivers within nuclear families and especially parents providing care might have a harder time recognizing their work, but the stress of responding to a crisis also means that some caregivers are too busy to explicitly recognize their role.
When Holly MacDonald, a 29-year-old in Brooklyn, New York, contracted Covid-19 in March, she never imagined she’d still be sick after nine months. “We kind of took it for granted she was going to keep getting better,” says Abbey MacDonald, Holly’s 47-year-old cousin. When that didn’t happen, Holly and Abbey started discussing options for full-time care for Holly. “We decided within minutes [Holly was] going to be moving here,” Abbey said of her home in North Salem, New York.
Abbey had to quickly convert her garage into a makeshift apartment and explain to her two young children that Holly was coming to stay. “It was … survival mode,” Holly says. There wasn’t time to deeply consider the plan. There was just Holly’s crisis and Abbey’s response to it.
People receiving care often feel shame about causing such disruptions. When Nataly tested positive for Covid-19 in June, she worried about being a burden and losing her independence, so she hid her more serious symptoms from her parents for weeks. “I needed so much more help than I was willing to admit,” Nataly says.
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Angela Meriquez, 33 and from Los Angeles, felt similarly afraid of overtaxing her husband Tony, also 33, who cared for her after they both fell ill with Covid-19 at the end of March and Angela didn’t recover. “It’s been really hard to be taken care of,” Angela says. “I don’t like feeling indebted to anyone, much less my partner. We have worked to make a really equal partnership, and now I feel like it’s really imbalanced.”
For Holly, asking for help was particularly difficult because she had lost both her parents at a young age. “I think when you lose your nuclear family, there’s a certain kind of survival instinct around taking care of yourself almost to a point of fault,” Holly explains.“To be chronically ill is almost a personal nightmare.” Holly lived on her own in New York City for four months this spring before she moved in with Abbey.
Since caregivers do not always recognize their own work, it sometimes falls on those they care for to do so.
Drane says feelings of shame are not uncommon among people receiving care. In the months after I was discharged from the hospital, I worried that the burden of my illness would prove too much for Sunik. While I was incredibly grateful for their quicker recovery, I sometimes found myself perversely wishing the situation were reversed, so I could feel needed instead of needy. Since neither Sunik nor I had ever discussed caregiving, we were both uncomfortable expressing how we felt.
My concern for Sunik’s well-being demonstrates that care is not one-directional, even for people with Covid-19 and their caregivers. Since caregivers do not always recognize their own work, it sometimes falls on those they care for to do so. When I asked Juanita about the burden of caregiving, she told me, “It’s not stressful. It’s a joy.”
Nataly was quick to point out that it hasn’t all been easy. “I’m the one that’s noticing everyone being burnt out around me,” she says. “I’m like, ‘Okay, you take a break, you tap out, let the other person tap in.’” Since Nataly can no longer work, her parents are covering her food, phone bill, and other expenses. Nataly is planning to apply for food stamps to help minimize the cost for her caregivers.
According to Rajiv Mehta, founder of Atlas of Care, a nonprofit that examines how humans care for one another, most patients provide care to their caregivers. In fact, Mehta thinks it’s time to scrap the term “caregiver” altogether in favor of recognizing frequent, multidirectional exchanges of care. “Let us start valuing more deeply day-to-day care throughout our whole lives,” Mehta said. Atlas of Care suggests drawing a “care map,” a diagram Mehta created to help individuals think about the many people with whom they exchange care.
While none of the patients or caregivers I spoke with had used online resources like the care map, all had found at least one source of peer support. For the Meriquezes, this meant leaning on another couple who had experience with chronic illness. When Angela was in the ER multiple times this summer, Tony would text with the husband of the couple. “He was just there,” Tony said. “It wasn’t anything profound … but just to check in goes a long way.”
Juanita and Nataly have similarly gotten help from an experienced caregiver in their circle of friends. Nataly described Jeannette, a family friend who stepped in to help with her care, as “a second mom.” When Nataly’s parents, who both work outside of the home, are unavailable, Jeannette drives Nataly to doctors’ appointments and joins her for physical therapy. She’s also helped Nataly navigate health insurance and disability benefits. Nataly told me Jeannette “knows how to work through the system” because she cares for both her aging mother and her child with Down syndrome.
Relying on guidance from friends like Jeanette is only one of many ways long Covid patients are learning from the experiences and advocacy of people with disabilities. “I’ve been thinking a lot about the generations of chronically ill and disabled people who’ve come before me,” Holly wrote to me after our conversation. “Much of what I’m experiencing is not a struggle unique to Covid.” Holly is right. While some of the hurdles long Covid patients and their caregivers face are a result of a novel virus and the unusual circumstances of the pandemic, the overarching issues of providing and receiving care without falling into cycles of shame and burnout are not new. Holly told me that diving deeper into the history of disability justice has helped her rethink her approach to care. “I recently learned this term ‘temporarily able bodied’ — which really resonated with me,” Holly wrote. “We are culturally so ableist, and we need a more normalized relationship with the idea that we all will need care and need to care for each other.”
This summer, Drane and her teammates at Archangels collaborated with the CDC on a study that assessed the mental health burdens on caregivers during the pandemic. Their research found that unpaid adult caregivers reported increased substance abuse, disproportionately worse mental health outcomes, and higher rates of suicidal ideation. This makes sense — the pandemic has placed a financial burden on many families, stripped many of support systems and coping mechanisms, and forced us all to reckon with a level of uncertainty few are accustomed to. As Tony put it, “everyone in the pandemic has felt their world shrink … but people who have been chronically ill and their partners [especially] … it’s just been this perfect storm of being at your low point emotionally and/or physically and having all your normal self-care routines be stripped away.”
In addition to the specific ways the pandemic has worsened caregivers’ abilities to care for themselves, Covid-19 has also created an entirely new wave of caregivers, people like Sunik who had never taken care of an ill or incapacitated loved one before and struggled to meet the demand. This year, there’s been a lot of talk about “pandemic preparedness,” and it’s made me wonder: Can the U.S. better prepare caregivers for crises? Mehta, Fox, and Drane all believe it’s possible, but it’s not as simple as just having prior experience caregiving. When Tony began caring for Angela this spring, he was reminded of caring for his mother, who died of cancer earlier this year. “I wish it had better prepared me, but it definitely made it difficult,” he says.
“We are culturally so ableist, and we need a more normalized relationship with the idea that we all will need care and need to care for each other.”
“He’s perfect at the tactical things,” Angela said but added, “I can see that it’s really hard for [Tony] to engage emotionally with someone who is sick because I feel like he sees his mom.”
Tony had to deal with two crises in one year, and according to the experts I spoke with, this was part of what made his job so hard. “You could be the most damn well-trained person in the world; you’re still going to be overwhelmed when things are a crisis,” Mehta told me. “If we are better able to see care in our life, better able to manage and think about [it] in a disciplined and active way … then we would actually be much better prepared when we get to a crisis.”
Mehta encouraged me to try out Atlas of Care’s care-mapping exercise, a tool Fox told me she used for herself and her family at the start of the pandemic. The exercise begins with a series of “reflection questions” about daily acts of caregiving, from more traditional modes such as medical assistance to forms of care we often take for granted, like comfort or laughter. After noting and reflecting on the people, groups, and professionals in my life with whom I regularly exchange care, I began sketching my network according to Atlas of Care’s instructions. Drawing my map made me realize how interconnected my own caregiving network is, but it also had the surprising effect of making me feel a bit less anxious and lonely. The map didn’t change the fact that Sunik and I would be staying home alone for the holidays, but it did make me feel like there was an emotional safety net available to me if I needed it.
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The map is not just a safety net, however — viewing it that way would buy into the idea that caregiving only exists in crises, which experts helped me understand may deepen associations between the act of caregiving and the feelings of loss, pain, and shame. Instead, Drane thinks the act of choosing caregivers should be culturally celebrated, like a marriage proposal or the choosing of godparents, and that it should happen in advance of needing care. Drane calls these chosen caregivers “archangels” because she thinks it gets closer to the “honor and glory” that should come along with the job of caring for someone you love.
When Holly first moved in with Abbey’s family, Abbey had to explain the situation to her kids, ages eight and nine. “I said Aunt Holly is moving in … and they were excited because aunts are cool,” Abbey explained, laughing. But, Holly’s presence required the family to make some significant life changes. Because the possibility of Covid-19 reinfection remains open, and Holly’s body has been weakened by the virus, the MacDonald cousins decided to take additional pandemic precautions. These new protocols included keeping Abbey’s kids home from school.
Abbey says her children have adjusted well to Holly’s presence. “Sometimes they’ll bring Holly some food,” Abbey says, and Holly told me she’s grown stronger emotionally as a result of her interactions with her niece and nephew. “It was the kids and figuring out how to communicate my health to the kids that gave me hope,” Holly said. “Because I told myself I’m going to reassure the kids that I’m getting better.” In turn, Holly has educated Abbey’s family about long Covid, and they are now spreading awareness about the often misunderstood condition in their community.
Imagining Abbey’s kids caring for Holly and learning about her condition reminded me of a story Susannah Fox told me about her own family. Growing up, Fox watched her parents care for her grandparents. When Fox reached her twenties and her grandparents’ health worsened, she began to spend weekends with them when her parents couldn’t. “I loved it,” she told me. “As a caregiving granddaughter, I got time with them, and they told me stories.” Looking back, Fox credits these early experiences with training her in “the craft” of caregiving as she calls it. I’m not typically one to look for silver linings in this pandemic, but I did wonder whether young people coming of age during the Covid-19 pandemic might have a unique opportunity to witness the craft of caregiving and learn from it.
Drane is hoping that the pandemic will draw public attention to the important work caregivers provide. She thinks people need to start by immediately recognizing unpaid caregivers as essential workers with “extraordinary talent” that can also be applied to other fields. “These people are masters at getting stuff done,” Drane says. “They are serving as an accountant, a lawyer, a chef, a concierge, a driver.” Fox believes this to be true as well; she says she lists her experience caring for her father on her CV.
Nataly is already thinking about how her experience receiving care can shape her future work. Before the pandemic, Nataly worked with children with autism and other disabilities. She’s looking forward to the day she can return to work. “My supervisor from my job had told me … when you come back, you’re going to be able to help these kids a lot more,” Nataly says. “Because now you know how it feels to be on the other side, to be dependent on people.”
