The guilt and confusion are overwhelming. You desperately want to feel compassion and empathy—and you know you do care, deeply, for your loved one. But sometimes, it feels like you’d need a backhoe to excavate that empathy and compassion from where it’s buried amidst the stress of caregiving. You aren’t alone. This scenario is common with caregivers—so common that it’s earned a dedicated clinical term: “empathy fatigue.”
What is empathy fatigue?
Empathy fatigue is the hopelessness and numbness you feel in the wake of repeated exposure to the stress and trauma of caregiving. It’s the inability – or, at minimum, the struggle – to care or show concern.
Research shows that the deep psychological response unique to family caregiving makes caregivers more susceptible to empathy fatigue than traditional health care workers. After all, health care workers don’t have the same deep emotional ties to your loved one as you do.
Symptoms of empathy fatigue
Empathy fatigue is a neurological defense mechanism. Witnessing your loved one suffer activates the empathy area of your brain, the same part of the brain activated when you feel physical pain.Over time, the stress of caregiving chronically activates this area of the brain.
Because the empathy area of the brain is intrinsically connected to the brain’s pain center, these ongoing feelings of empathy begin to smother your innate ability to cope.As a result, the empathy part of the brain becomes increasingly underactive in a protective effort to shield you from the damaging effects of chronic emotional stress.
When this happens, empathy fatigue occurs.You shut down.Empathy fatigue can manifest in both emotional and physical ways, which then negatively affect both social functioning and work performance.Emotional symptoms can include:
Social isolation and inability to relate to others
Feeling numb and exhibiting self-blame
Lack of energy, feeling overwhelmed, powerless or hopeless
Inability to concentrate, be productive or complete daily tasks
Headaches, nausea or upset stomach, changes in appetite
Difficulty sleeping, racing thoughts and constant exhaustion
Self-medicating with drugs or alcohol
Conflicts in your relationships and avoiding work or other activities
How compassion can protect you from empathy fatigue
Being a family caregiver doesn’t necessarily mean you’ll develop empathy fatigue. After all, humans are social creatures—we can’t just “turn off” our empathy.
So, what can we do when our empathy starts to become harmful? The answer is compassion.
Empathy = ability to take the perspective of another person + feel the emotions of another person.
Compassion = ability to take the perspective of another person + feel the emotions of another person + the desire to help.
But how can you instigate the “desire to help” once you have empathy fatigue and you don’t necessarily feel the desire to help?Recent research shows that activating the “compassion” brain region in tandem with the “empathy” brain region helps to prevent and ease empathy fatigue.
Why compassion matters
Compassion is the neurological antidote to the slow drip of poison stemming from the neurological stress of witnessing the suffering of your loved one, day in and day out. Remember, your brain cannot decipher empathy from physical pain. Empathy hurts, literally.The great news is that compassion is something you can develop at any point in life using a simple meditation called the loving-kindness meditation.
The loving-kindness meditation builds compassion The loving-kindness meditation (sometimes referred to as metta meditation) is a guided meditation where you wish yourself and others to be happy, content and at ease.Public health expert and preventive medicine physician Dr. Rashmi Bismark, MD, MPH, studies how complementary and alternative healing modalities promote health, primarily through improving risk factors and outcomes related to chronic diseases.
She explained that the guided imagery included in the loving-kindness meditation strengthens your capacity for self-love and self-compassion and heightens your compassion for others.
What to expect when you practice the loving-kindness meditation
The loving-kindness meditation is a guided meditation, making it particularly accessible to new and inexperienced medication practitioners alike; guided meditation allows the guide to do the heavy (mental) lifting of the meditation. You just sit and listen, releasing your imagination from the restraints of “adulting.”
To start, find a comfortable position, either sitting or lying down. After spending a few moments focusing on your breathing, your meditation guide will initiate the first phase of the meditation, which is for you to receive loving-kindness. (Remember, you need to build a protective compassion shield before you can safely feel empathy for others.)
During this initial phase, you will mentally repeat the following phrases:May I be happy.May I be well.May I be safe.May I be peaceful and at ease.In the next stage of the meditation, you direct love and compassion to a friend or someone in your life who has deeply cared for you, slowly repeating phrases of loving-kindness toward them:May you be happy.May you be well.May you be safe.May you be peaceful and at ease.
The meditation continues to expand your circle of well-wishing, gradually extending these wishes to increasingly “unlikeable” others (from yourself to a friend to a complete stranger to someone difficult in your life and finally to all living beings).
Where to find a loving-kindness meditation
Loving-kindness meditations can likely be found in yoga in meditation studios in your local area. There is also a plethora of online resources offering excellent guided loving-kindness meditation practices.
Work from home jobs for caregivers have been on the rise in recent years, and for good reason. A recent study by Mother Honestly and Care.com found that 73% of caregivers use the time they save from working from home to care for their children, and 70% use it to spend more time with their partner or spouse.
This report shows that remote work can be vital for work-life balance, and employers must take note of these findings before deciding to eliminate remote work. Having helped 21 organizations as a consultant in implementing hybrid work, I talk to a few leaders every week about how to manage their workforce talent strategy. And inevitably, parents and other caregivers come into the picture.
One of the main benefits of work from home jobs for caregivers is that it levels the gender playing field. Traditionally, caregiving responsibilities have been shouldered by women, but the ability to work from home has made it easier for men to contribute to child care and household chores.
The study found that 47% of men with a child under 15 felt they could spend more time with their kids and better help out their partners. This is a significant shift and it means that more opportunities are opening up for women to slow down on the homefront and ramp up on the workfront.
Additionally, managers and caregivers are on the same page when it comes to remote work. The study found that 77% of managers and 76% of caregivers agree that remote work improves workers’ overall quality of life. This is a significant shift as it shows that remote work has finally proven itself after three years of uncertainty from leaders.
It’s important to note that remote work doesn’t have to have a downside. Many workers and leaders are worried about the threat remote work poses to career advancement. The study found that 58% of women and 64% of men say remote work limits their career, while 48% of managers believe showing up to the office equates to more advancement opportunities. However, if employers truly commit to implementing a flexible and inclusive workplace, remote work can be a win-win for both employees and employers.
One of the challenges that companies face when implementing remote work is cognitive biases. Attentional bias can play a role, as managers may only pay attention to the negative aspects of remote work and ignore the positive benefits, despite the new research about the benefits of remote work for caregivers.
Another cognitive bias that can impact companies is the status quo bias. This bias can lead managers to prefer the status quo, even when it’s not the best option. For example, a manager may prefer to keep their employees in the office, even though remote work would benefit both the employees and the company through helping caregivers stay at their jobs.
Functional fixedness is another cognitive bias that can impact the remote work discussion. Managers may view remote work as a fixed concept and may not consider different variations of remote work, such as a hybrid model, that may better suit the company’s needs and help to provide work-life balance for caregivers.
The empathy gap can also play a role in the remote work discussion. Managers may not be able to fully understand the challenges that caregivers face and may not fully appreciate the benefits of remote work for caregivers.
It’s important for employers to understand that remote work can level the gender playing field, with men stepping up more than ever before due to newfound flexibility. Remote work also improves workers’ overall quality of life and can be a win-win for both employees and employers if implemented correctly.
However, employers must also be aware of the potential downsides of remote work and how cognitive biases can impact their decision-making process. It’s essential to consider different variations of remote work, such as a hybrid model, that may better suit the company’s needs.
Additionally, employers must understand that remote work can also have a positive impact on the company’s bottom line. A recent study from Stanford found that companies that offer remote work options have lower turnover rates, which in turn can save the company money in recruitment and training costs.
Work from home jobs for caregivers are becoming increasingly important as the need for work-life balance becomes more pressing. Employers must take note of the benefits of remote work for caregivers, and be aware of the potential downsides and how cognitive biases can impact their decision-making process. By implementing a flexible and inclusive workplace, employers can reap the benefits of remote work for both employees and the company.
I help leaders use hybrid work to improve productivity and retention while cutting costs as the CEO of the boutique future-of-work consultancy Disaster
A spoiled kid is one who thinks and acts like the world revolves around them. They’re used to getting what they want, when they want it — and if they don’t, they’ll throw a fit until they do. They show little to no appreciation for what they have and expect others to cater to them, often without contributing anything in return.
Some parenting experts don’t like to use the word “spoiled” to describe a child because it implies they’re somehow “ruined.” Some prefer the word “entitled,” with a focus on labeling the negative behavior, not the kid’s character.
According to parenting coach Amy McCready, founder of Positive Parenting Solutions, examples of entitled behavior might include “the expectation that things will be done for them, like the household chores, or awarded to them unnecessarily, like getting candy for trying one bite of broccoli or getting paid to do homework.”
“Entitled kids may also believe they are the center of the universe and that rules don’t apply to them,” McCready said. “They usually get their way and fail to show gratitude.”
Parenting coach Traci Baxley, author of “Social Justice Parenting,” told HuffPost that in her work, she focuses less on the kid’s behavior and more on the parents’ habits and approach. Caregivers rarely set out to raise a spoiled child, but they may end up indulging their kids anyway for a number of reasons.
“Parents show up using the limited tools they were taught, or attempt to overcompensate for lack in their own childhood,” Baxley said. “Parents are humans first, with lived experiences and possible traumas from the past that show up as fear, protection, and misguided, but well-intended, love.”
One quick thing to clear up: Spoiling a kid has nothing to do with “over-loving” them, said Aliza Pressman, co-founder of the Mount Sinai Parenting Center and host of the “Raising Good Humans” podcast.
“There is never a limit to how much love you have and show children,” she said. “This does not contribute to that sense of entitlement.”But if your way of showing love to your child is “tending to their every wish and need without teaching them there are limits, and that they can do and work towards things themselves,” then your kids are more likely to be entitled, McCready said.
No child is born “spoiled”— it’s a learned behavior, Baxley said. So the good news is that we can help our kids become less entitled by modifying our parenting approaches and helping them change their behavior in turn. Here’s how to “un-spoil” a child, according to experts.
Do some self-reflection.
Take time to think about why you make some of the parenting decisions you do. Ask yourself: “Why do I need to over-purchase for my child? Why do I find it too difficult to say no? How does it make me feel after I’ve bought something or said yes when I really wanted to say no?” Baxley said.
“See what bubbles up for you,” she said. “See if you can connect something in the past to your current parenting practices and engage in small intentional steps to make changes.” Be aware that this kind of reflection can be difficult for some parents, because it may bring up painful memories from their own childhood.
“Please know that this process may include getting professional support, great patience and giving yourself grace along the way,” Baxley said.
Encourage autonomy.
“This means not doing for your child what they can already do for themselves, guiding and encouraging them to do what they can almost do, and teaching and modeling things they are not yet ready to do,” Pressman said. Examples might include things like getting dressed, putting on their shoes or making a snack.
Set and enforce boundaries consistently.
You may hate setting limits or saying “no” to your kid because it’s exhausting or distressing to watch them have a meltdown. But kids want and need consistent boundaries, Baxley said. Nevertheless, they’ll push back — “and push back hard if they aren’t used to boundaries from their parents,” she said.
“During their breakdowns or lack of emotional regulation, acknowledge the feelings instead of rewarding the temper tantrum or negative behavior,” she said.
How do you do this? Say something like: “‘I see you are disappointed you couldn’t get that toy today’ or ‘I know not being allowed to have a sleepover with your friends makes you angry,’” Baxley suggested. “This demonstrates that you have empathy and compassion for them in this situation, but you’re enforcing boundaries.”
Give them responsibilities at home.
When you kid is accustomed to you catering to their needs, it’s not easy getting them to meet your new expectations to do more at home. It can help to use what McCready calls “when-then routines.”
“You can use a when-then routine for anything from getting household work done —‘When the dog is walked, then you can see your friend’ — to bedtime — ’When your teeth are brushed and you’re in your pajamas, then we can read your book. But remember, lights out at 8 p.m.,’” she said. “Please note that the ’thens’ are regularly occurring events and activities and not rewards!”
Ditch rewards for everyday tasks.
Rewarding your kids with money, treats or toys to motivate them to do their homework or brush their teeth may work in the moment — “but in real life, prizes for basic tasks are few or nonexistent,” McCready said.
“That’s why it’s important to nurture long-term motivation — the capacity for hard work and self-achievement — and the benefits that come from that effort alone,” she said.
Don’t rescue your kid when they make mistakes or experience setbacks.
Parents have a tendency to want to rush in, fix things and save the day, often unnecessarily. It’s OK — good, even — to allow kids to fail and experience consequences for their actions.
“If a child did not get the part in the play or picked for the soccer team, support them through their challenging feelings, but don’t offer to speak to the coach and change the situation,” Pressman said. “If they forget their homework, allow them to experience the discomfort of owning up to it rather than having you explain it to the teacher. That helps kids grow up knowing what it feels like to be disappointed and to seek emotional support and move forward.”
Expect — and accept — that your child will be upset with you.
It’s inevitable: Your kid is going to get angry or disappointed with you at times. They might even say they don’t like you or need you. But parenting isn’t about being popular or well-liked all the time, Baxley said.
“Don’t let their behavior and words determine your family’s values and boundaries,” she said. “As part of a child’s development, from toddler to teenager, they test the power of using their voice. They are caught between two ways of being — to be independent and take care of themselves and the need to be loved and nurtured by their parents.”
You can give your child space to voice their feelings and frustrations without giving in to them all the time.
“Listen attentively and lovingly,” Baxley said. “We want them to know their voice and opinions matter. Stay consistent with your established values, so they know what your family’s guideposts are and they learn how to be accountable for their words and actions.”
Reinforce values like community and teamwork.
Entitled kids may struggle to think about other people’s needs. Having them contribute to the household by assisting with chores, or having them participate in community volunteer work, can help reinforce this.
“When we participate in acts of kindness, we experience a sense of joy,” Baxley said. “Each time our children get an opportunity to do for others, we build these habits of kindness. Over time, these habits will become the learned behaviors that we desire for our children.”
Help them be more considerate of others, shifting their focus from “me, me, me” to “we, we, we.”
“Look for those everyday moments to do so,” educational psychologist Michele Borba previously told HuffPost. “Like, ‘Let’s ask Alice what she would like to do,’ ‘How do you think Daddy feels?’ ‘Ask your friend what he would like to play’ or ‘Let’s go volunteer at the soup kitchen.’”
Refrain from shaming them.
Making your kid feel ashamed over their entitled behavior isn’t going to be productive for them or for you.
“Shaming does not help kids get unspoiled,” Pressman said. “Avoid saying, ‘You’re spoiled because…’ Instead, focus on helping kids understand that their behavior may need some fine-tuning, but who they are as a person is someone you love unconditionally.”
Self-doubt is one of the causes of failure in people’s lives. Many people are unsure of themselves, and often need the belief of others to pull through. “Believe in yourself” is easier said than done – generally, when the rubber meets the road, people struggle with it.
You would think that money, success, or fame would stop people from doubting themselves, but this is not quite the case. Many successful people and leaders are insecure and crippled by self-doubt. My point is: there is a huge significant need for belief support. Often, we need someone to believe in us for success to happen. So, what does belief in people do for them? Here are three benefits.
It Gives Unusual Courage: I have seen this work in my coaching practice. My clients do not doubt that I strongly believe in them – I communicate it. Consequently, they get the boost to achieve phenomenal results. I have witnessed the unusual courage that people get when they are certain that someone truly believes in them – it’s magical. Self-belief is one thing, but another’s belief gives you extra strength to keep going.
In life, it is important to believe in yourself, but equally vital when someone believes in you and is willing to give you a chance. How many teams now suffer because the leader did not believe in the team members? How many children now live dysfunctional lives because their primary caregivers didn’t express belief in them? Our lives are interconnected, and self-belief alone isn’t enough. Unusual courage grows when someone (or group) truly sees you, believes in you, and is willing to bet on you.
It Restores Self-Esteem: Self-doubt means that you don’t believe you are enough in certain areas – your self-worth is under siege. Here, someone who believes in you would help you to see yourself differently, and gradually, you would move from “I am not enough” to “I am good enough”. When you believe in people, you help to heal inner wounds that made them think less of themselves. It restores and reaffirms their self-worth.
It Inspires Growth: True belief in people gives them clarity of purpose, which in turn, creates the desire for continuous growth and improvement. In this case, people become excited about the next level and take steps to achieve it. The fact that they know that you are rooting for them gives strength to move forward. Belief in people gives them the emotional anchor and stability required for sustainable success in life.
We’ve all been there. At some points in our lives, we question whether we are doing well enough or are capable of facing all the uncertainties that might come up as we grow older. We experience feelings of self-doubt around decisions and choices we made or simply feel that we’re not good enough.
Self-doubt occurs when we lack confidence or feel incapable of doing things we need to do. People who doubt about themselves experience uncertainty around things they can’t control or worry about things not going according to plan.
A certain level of self-doubt is good because it indicates that you understand what you need to improve in order to do a better job. However, persistent fear and self-doubt can hugely affect your life in a bad way.
In this article, you’ll find out why self-doubt is holding you back from happiness and success and what you can do to overcome it.
How Self-Doubt Keeps You Stuck
Let’s picture this:
Your boss has assigned you an important task because he thinks you are the most suitable person in the room. But instead of taking it as a recognition of your work performance, you start to panic.
You panic about whether you are capable of doing a great job. You worry that failing to perform well will become a big joke at work. You spend time stressing over every single decision you make and picture how things might go wrong.
It’s not surprising that fear will then play a big role in your own little drama. It leads you toward procrastination. You delay your work and feel unmotivated.
At the end of the story, you hand in your work at the very last minute, and, of course, it’s not hard to guess that you will have the feeling of “I can actually do better than this.”
What causes self-doubt? Let’s find out!..Read more
Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients. Kira Stoops lives in Bozeman, Montana—a beautiful mountain town where it sometimes feels like everyone regularly goes on 50-mile runs. Stoops, however, can’t walk around her own block on most days. To stand for more than a few minutes, she needs a wheeled walker.
She reacts so badly to most foods that her diet consists of just 12 ingredients. Her “brain fog” usually lifts for a mere two hours in the morning, during which she can sometimes work or, more rarely, see friends. Stoops has myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). “I’m considered a moderate patient on the mild side,” she told me.
ME/CFS involves a panoply of debilitating symptoms that affect many organ systems and that get worse with exertion. The Institute of Medicine estimates that it affects 836,000 to 2.5 million people in the U.S. alone, but is so misunderstood and stigmatized that about 90 percent of people who have it have never been diagnosed.
At best, most medical professionals know nothing about ME/CFS; at worst, they tell patients that their symptoms are psychosomatic, anxiety-induced, or simply signs of laziness. While ME/CFS patients, their caregivers, and the few doctors who treat them have spent years fighting for medical legitimacy, the coronavirus pandemic has now forced the issue.
Even if that proportion is 10 times lower for SARS-CoV-2, the number of Americans with ME/CFS would still have doubled in the past three years. “We’re adding an immense volume of patients to an already dysfunctional and overburdened system,” Beth Pollack, a scientist at MIT who studies complex chronic illnesses, told me.
The U.S. has so few doctors who truly understand the disease and know how to treat it that when they convened in 2018 to create a formal coalition, there were only about a dozen, and the youngest was 60. Currently, the coalition’s website lists just 21 names, of whom at least three have retired and one is dead, Linda Tannenbaum, the CEO and president of the Open Medicine Foundation, told me.
These specialists are concentrated on the coasts; none work in the Midwest. American ME/CFS patients may outnumber the population of 15 individual states, but ME/CFS specialists couldn’t fill a Major League Baseball roster.
Stoops, who is 39, was formally diagnosed with ME/CFS only four years ago, and began receiving proper care from two of those specialists—Lucinda Bateman of the Bateman Horne Center and David Kaufman from the Center for Complex Diseases. Bateman told me that even before the pandemic, she could see fewer than 10 percent of the patients who asked for a consultation. “When I got into those practices, it was like I got into Harvard,” Stoops told me.
ME/CFS specialists, already overwhelmed with demand for their services, now have to decide how to best use and spread their knowledge, at a time when more patients and doctors than ever could benefit from it. Kaufman recently discharged many of the more stable ME/CFS patients in his care—Stoops among them—so that he could start seeing COVID long-haulers who “were just making the circuit of doctors and getting nowhere,” he told me.
“I can’t clone myself, and this was the only other way to” make room for new patients. Bateman, meanwhile, is feverishly focused on educating other clinicians. The hallmark symptom of ME/CFS—post-exertional malaise, or PEM—means even light physical or mental exertion can trigger major crashes that exacerbate every other symptom. Doctors who are unfamiliar with PEM, including many now running long-COVID clinics, can unwittingly hurt their patients by encouraging them to exercise.
Bateman is racing to spread that message, and better ways of treating patients, but that means she’ll have to reduce her clinic hours. These agonizing decisions mean that many existing ME/CFS patients are losing access to the best care they had found so far—what for Stoops meant “the difference between being stuck at home, miserable and in pain, and actually going out once or twice a day, seeing other humans, and breathing fresh air,” she told me.
But painful trade-offs might be necessary to finally drag American medicine to a place where it can treat these kinds of complex, oft-neglected conditions. Kaufman is 75 and Bateman is 64. Although both of them told me they’re not retiring anytime soon, they also won’t be practicing forever. To make full use of their expertise and create more doctors like them, the medical profession must face up to decades spent dismissing illnesses such as ME/CFS—an overdue reckoning incited by long COVID.
“It’s a disaster possibly wrapped up in a blessing,” Stoops told me. “The system is cracking and needs to crack.” Many ME/CFS specialists have a deep knowledge of the disease because they’ve experienced it firsthand. Jennifer Curtin, one of the youngest doctors in the field, has two family members with the disease, and had it herself for nine years. She improved enough to make it through medical school and residency training, which showed her that ME/CFS “just isn’t taught,” she told me. Most curricula don’t include it; most textbooks don’t mention it.
Even if doctors learn about ME/CFS, America’s health-care system makes it almost impossible for them to actually help patients. The insurance model pushes physicians toward shorter visits; 15 minutes might feel luxurious. “My average visit length is an hour, which doesn’t include the time I spend going over the patient’s 500 to 1,700 pages of records beforehand,” Curtin said. “It’s not a very scalable kind of care.” (She works with Kaufman at the Center for Complex Diseases, which bills patients directly.)
This also explains why the cohort of ME/CFS clinicians is aging out, with little young blood to refresh them. “Hospital systems want physicians to see lots of patients and they want them to follow the rules,” Kaufman said. “There’s less motivation for moving into areas of medicine that are more unknown and challenging.”
ME/CFS is certainly challenging, not least because it’s just “one face of a many-sided problem,” Jaime Seltzer, the director of scientific and medical outreach at the advocacy group MEAction, told me. The condition’s root causes can also lead to several distinct but interlocking illnesses, including mast cell activation syndrome, Ehlers-Danlos syndrome, fibromyalgia, dysautonomia (usually manifesting as POTS), and several autoimmune and gastrointestinal disorders.
“I’m still amazed at how often patients come in with Complaint No. 1, and then I find five to seven of the other things,” Kaufman said. These syndromes collectively afflict many organ systems, which can baffle doctors who’ve specialized in just one. Many of them disproportionately affect women, and are subject to medicine’s long-standing tendency to minimize or psychologize women’s pain, Pollack told me:
An average woman with Ehlers-Danlos syndrome typically spends 16 years getting a diagnosis, while a man needs only four. People with long COVID might have many of these conditions and not know about any—because their doctors don’t either. Like ME/CFS, they rarely feature in medical training, and it’s hard to “teach someone about all of them when they’ve never heard of any of them,” Seltzer said.
Specialists like Bateman and Kaufman matter because they understand not just ME/CFS but also the connected puzzle pieces. They can look at a patient’s full array of symptoms and prioritize the ones that are most urgent or foundational. They know how to test for conditions that can be invisible to standard medical techniques: “None of my tests came back abnormal until I saw an ME/CFS doctor, and then all my tests came back abnormal,” said Hannah Davis of the Patient-Led Research Collaborative, who has had long COVID since March 2020.
ME/CFS specialists also know how to help, in ways that are directly applicable to cases of long COVID with overlapping symptoms. ME/CFS has no cure but can be managed, often through “simple, inexpensive interventions that can be done through primary care,” Bateman told me. Over-the-counter antihistamines can help patients with inflammatory problems such as mast cell activation syndrome. Low doses of naltrexone, commonly used for addiction disorders, can help those with intense pain.
A simple but rarely administered test can show if patients have orthostatic intolerance—a blood-flow problem that worsens other symptoms when people stand or sit upright. Most important, teaching patients about pacing—carefully sensing and managing your energy levels—can prevent debilitating crashes. “We don’t go to an ME/CFS clinic and walk out in remission,” Stoops told me. “You go to become stabilized. The ship has 1,000 holes, and doctors can patch one before the next explodes, keeping the whole thing afloat.”
That’s why the prospect of losing specialists is so galling. Stoops understands why her doctors might choose to focus on education or newly diagnosed COVID long-haulers, but ME/CFS patients are “just so lost already, and to lose what little we have is a really big deal,” she said. Kaufman has offered to refer her to generalist physicians or talk to primary-care doctors on her behalf. But it won’t be the same: “Having one appointment with him is like six to eight appointments with other practitioners,” she said.
He educates her about ME/CFS; with other doctors, it’s often the other way round. “I’m going to have to work much harder to receive a similar level of care.” At least, she will for now. The ME/CFS specialists who are shifting their focus are hoping that they can use this moment of crisis to create more resources for everyone with these diseases. In a few years, Bateman hopes, “there will be 100 times more clinicians who are prepared to manage patients, and many more people with ME/CFS who have access to care.”
For any mainstream disease, such events—a report, a guideline revision, a review article—would be mundane. For ME/CFS, they felt momentous. And yet, “the current state of things is simply intolerable,” Julie Rehmeyer, a journalist with ME/CFS, told me. Solving the gargantuan challenge posed by complex chronic diseases demands seismic shifts in research funding, medical training, and public attitudes. “Achieving shifts like that takes something big,” Rehmeyer said. “Long COVID is big.”
COVID long-haulers have proved beyond any reasonable doubt that acute viral infections can leave people chronically ill. Many health-care workers, political-decision makers, and influencers either know someone with long COVID or have it themselves. Even if they still don’t know about ME/CFS, their heightened awareness of post-viral illnesses is already making a difference. Mary Dimmock’s son developed ME/CFS in 2011, and before the pandemic, one doctor in 10 might take him seriously.
“Now it’s the flip: Only one doctor out of 10 will be a real jerk,” Dimmock told me. “I attribute that to long COVID.” But being believed is the very least that ME/CFS patients deserve. They need therapeutics that target the root causes of the disease, which will require a clear understanding of those causes, which will require coordinated, well-funded research—three things ME/CFS has historically lacked.
But here, too, “long COVID is going to be a catalyst,” Amy Proal, the president of the Polybio Research Foundation, told me. She is leading the Long Covid Research Initiative—a group of scientists, including ME/CFS researchers, that will use state-of-the-art techniques to see exactly how the new coronavirus causes long COVID, and rapidly push potential treatments through clinical trials.
While they wait for better treatments, patients also need the medical community to heed the lessons that they and their clinicians have learned. For example, the American Academy for Family Physicians website still wrongly recommends exercise therapy and links ME/CFS to childhood abuse. “That group of doctors is very important to these patients,” Dimmock said, “so what does that say to them about what this disease is all about?”
Despite all evidence to the contrary, many clinicians and researchers still don’t see ME/CFS as a legitimate illness and are quick to dismiss any connection between it and long COVID. To ensure that both groups of patients get the best possible treatments, instead of advice that might harm them, ME/CFS specialists are working to disseminate their hard-won knowledge.
Bateman and her colleagues have been creating educational resources for cliniciansand patients, continuing-medical-education courses, and an online lecture series. Jennifer Curtin has spent two years mapping all the decisions she makes when seeing a new patient, and is converting those into a tool that other clinicians can use. As part of her new start-up, called RTHM, she’s also trying to develop better ways of testing for ME/CFS and its related syndromes, of visualizing the hefty electronic health records that chronically ill patients accumulate, and of tracking the treatments they try and their effects.
“There are a lot of things that need to be fixed for this kind of care to be scalable,” Curtin told me. Had such shifts already occurred, the medical profession might have had more to offer COVID long-haulers beyond bewilderment and dismissal. But if the profession starts listening to the ME/CFS community now, it will stand the best chance of helping people being disabled by COVID, and of steeling itself against future epidemics.
Pathogens have been chronically disabling people for the longest time, and more pandemics are inevitable. The current one could and should be the last whose long-haulers are greeted with disbelief. New centers that cater to ME/CFS patients are already emerging. RTHM is currently focused on COVID long-haulers but will take on some of David Kaufman’s former patients in November, and will open its waiting list to the broader ME/CFS community in December.
(It is currently licensed to practice in just five states but expects to expand soon.) David Putrino, who leads a long-COVID rehabilitation clinic in Mount Sinai, is trying to raise funds for a new clinic that will treat both long COVID and ME/CFS. He credits ME/CFS patients with opening his eyes to the connection between long COVID and their condition.
Every ME/CFS patient I’ve talked with predicted long COVID’s arrival well before most doctors or even epidemiologists started catching up. They know more about complex chronic illnesses than many of the people now treating long COVID do. Despite having a condition that saps their energy, many have spent the past few years helping long-haulers navigate what for them was well-trodden terrain: “I did barely anything but work in 2020,” Seltzer told me.
Against the odds, they’ve survived. But the pandemic has created a catalytic opportunity for the odds to finally be tilted in their favor, “so that neither patients nor doctors of any complex chronic illness have to be heroes anymore,” Rehmeyer said.
Symptoms of empathy fatigue
To start, find a comfortable position, either sitting or lying down. After spending a few moments focusing on your breathing, your meditation guide will initiate the first phase of the meditation, which is for you to receive loving-kindness. (Remember, you need to build a protective compassion shield before you can safely feel empathy for others.)
