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How Long Haul COVID Takes a Toll on Your Mental Health

woman in bed with a headache

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Key Takeaways

  • Long-haul COVID (sometimes referred to as post-COVID) conditions refer to symptoms that persist for more than one month following onset, most commonly causing ongoing respiratory and neurological challenges in addition to other systemic health concerns.
  • It's possible that some mental health symptoms could be caused by COVID-19's presence in the brain. Adjusting to new health concerns can also spark new mental health symptoms.
  • Those who live with long-haul COVID lack answers about recovery as they adjust to emerging health concerns and need mental health support as they navigate that journey.

COVID-19, originally treated as an acute respiratory illness, is a virus with symptoms that can linger in patients—with some still encountering challenges over a year after their symptoms first emerged. "Long COVID" and "post-COVID" conditions refer to health problems that patients experience more than four weeks after initial infection. The stress of these lingering symptoms can take a real toll on mental health.

Persistent physical symptoms for most long-haul COVID patients include difficulty breathing, heart palpitations, shortness of breath, and fever. Some experience multi-organ effects which impact the heart, lungs, kidneys, skin, and brain. Additionally, autoimmune conditions and new allergies can emerge. Some patients experience strokes, seizures, and changes in motor function and perception.

Patients often encounter multiple symptoms, and it can be difficult to adjust or fully recover. Because data is still emerging about long-haul experiences, patients have little understanding of long-term prognoses and might lack access to appropriate treatments or answers about their health.

Neurological Symptoms Intersect with Mental Health

Just over 80% of long-haulers experience brain fog—a non-medical description for feeling mentally sluggish, hazy, or spaced out. Additional neurological symptoms include dizziness, fatigue, numbness, tingling, pain, change in the ability to taste and smell, vision changes, tinnitus, and cognitive impairment. Insomnia, depression, and anxiety—considered both mental health concerns and neurological symptoms—are also reported.

Philip Fizur, PsyD, clinical health psychologist at Cooper Hospital in Camden, New Jersey, says that fatigue, pain, and other neurological symptoms can lead to and perpetuate depression. But he underlines that it's hard to tell in individual patients if mental health symptoms emerge due to neurological reasons or if it's because dealing with COVID symptoms is a stressor. Each person's symptoms could have different causes.

Philip Fizur, PsyD

COVID can certainly produce these symptoms and they may be stand-alone, related only to COVID. At the same time, if people had depression at baseline, some of these symptoms may have been present already and are now worse due to COVID.

— Philip Fizur, PsyD

No matter the cause, it's important to treat the symptoms. Fizur says that mental health professionals work closely with medical teams to find solutions, and various interventions—including acceptance and commitment therapy and cognitive behavioral therapy—can improve poor sleep, depression, and other mental health concerns so medical teams can more clearly target symptoms with neurological origins.

He underlines that people with neurological and mental health concerns often face barriers associated with being "invisibly" disabled—looking to others as though they aren't disabled but living with symptoms that are still debilitating. This causes mental health concerns that will continue to linger—such as depression, anxiety, and even PTSD—as people recover or adjust to new experiences.

Adapting to Health Changes

Symptoms didn't emerge for Janine Hays, 42, until weeks after her husband, Brian, started to recover from COVID-caused double pneumonia. She says, "One morning, I'm in the bathroom and my feet start burning like they're on fire and look completely red." Allergy symptoms emerged and progressively got worse as she struggled to eat almost anything without a reaction.

Her doctor gave her allergy medication and an epi-pen—which she's needed to use twice to combat anaphylaxis. Brian became her caretaker and medical advocate as her allergies and neurological symptoms worsened. She says, "I could barely get around the house anymore so I was just in bed for two months. I completely decompensated." Throughout 2021, she's been relearning how to talk, walk, eat, and use the bathroom.

Janine Hays, Long-Haul Survivor

It was kind of like starting from a toddler stage—just learning how to use my entire body again.

— Janine Hays, Long-Haul Survivor


Pixie Kirsch Nirenberg is a therapist with Rainbow Rose Therapy in Philadelphia. They explain that neurological symptoms can impact functional ability and physical limitations. This can be difficult to adjust to.

They say, "It might take people struggling with neurological symptoms significantly more energy to go about their day. They might find that their jobs or other activities are more difficult, and that they have to compensate in ways that are still new to them. That immediately increases people's stress and decreases the energy they have for other pieces of their lives."

Pixie says that learning new ways to do tasks that used to be much easier for someone often leads to self-judgment as people compare themselves to others or their own previous abilities. When people lack patience and compassion for themselves, overall stress increases. This underlines the need for a support network to find help with tasks that long-haulers can't pursue independently.

The loss of agency, mobility, and body function might lead some to feel that they have lost their sense of self. For example, physical limitations that restrict the ability to pursue a sport or activity someone once loved or used as a coping strategy forces them to rely on other, sometimes less healthy, methods for coping.

Some might be in denial about long-term prognoses or struggle to find new hobbies. Pixie reminds people whose health and mobility is changing to practice self-care by moving in ways that feel comfortable and joyful, taking breaks whenever it's necessary.

Friends and allies shouldn't assume that people living with long-haul COVID will be able to participate in the same activities they enjoyed before the pandemic—but they shouldn't avoid extending an invitation either. The best way to be supportive to someone with long-term symptoms or slow recovery is to ask what the person needs.

Ask long-haulers what activities feel comfortable, what times of day are best to avoid triggering symptoms, and if other accommodations are necessary. Pixie says, "Remind them that they are just as valuable and valued as they were before and that if they want to talk about it, you're there to listen without judgment and there to help."

Coping With Feelings About Symptoms

Fizur explains that many are frustrated with a lack of answers about symptoms and prognoses. Pixie notes that people might journey through the stages of grief: sadness, anger, bargaining, denial, and acceptance. These stages aren't a linear progression. Emotions could feel disorganized, bounce around, or occur all at once.

They say it's normal to feel confused, sad, or even ashamed as health changes because ableism is so pervasive in society. Internalized ableism might manifest in feelings of worthlessness which is difficult to combat, but Pixie highlights that people can learn to feel empowered in their bodies in time and with the right support.

Pixie Kirsch Nirenberg, LSW

We try to circumvent grief by saying that someone else always has it worse or by saying that it'll get better—but the fact is that you've gone through something that's hard for you. Give yourself space to feel that.

— Pixie Kirsch Nirenberg, LSW

Patti Spacio, a registered nurse, was exposed to COVID while working with a hospice patient. Within a week, Spacio struggled to breathe and was eventually diagnosed with double pneumonia. Seven months later, she’s still using supplemental oxygen overnight and has had pulmonary and cardiac procedures related to pressure placed on her heart and lungs. Still, she sometimes feels that she shouldn't talk about her experiences in COVID support groups because others are navigating their own hardships.

Spacio says that finding community at post-COVID recovery clinics has been helpful for processing feelings. She says that the other patients she meets in rehab have similar prognoses and experiences, so she feels a sense of camaraderie.

Accessing Adequate Care for Physical and Mental Health Symptoms

Worker's compensation insurance covered certain rehabilitation efforts for Spacio, but she’s needed to advocate for and manage additional aspects of her care on her own. Those who don’t have insurance sometimes lack the resources they need to see specialists, monitor symptoms, and seek rehabilitative treatment. Many can’t cover costs for copays, testing, and medications. Lacking access to resources or navigating the health system without support is also a mental health burden.

Spacio developed anxiety, but the medications she was offered are known to depress breathing. “I could only take it during the daytime if I absolutely needed it and then keep an eye on my breathing. That causes anxiety in itself so I didn’t take it.”

She’s considered reaching out to her company’s employee assistance program (EAP). These are typically free or low-cost options for confidential counseling and psychological support, but people who work as contractors or in part-time positions might not have access to them.

Even seeking a diagnosis can be a challenge. Joseph Cuccio, 37, experienced respiratory and systemic symptoms, but he also encountered neurological challenges including confusion, disorganized thoughts, vertigo, extreme fatigue, and even loss of consciousness.

“It was like a tilt-a-whirl I was never able to get off of. Everything was spinning from November through February.” He was tested for drug and alcohol intoxication and treated as though he was faking symptoms.

Joseph Cuccio, Long-Haul Survivor

I’m a nurse so I’m usually able to self-advocate in medical settings, but my neurological symptoms made it difficult to advocate for myself.

— Joseph Cuccio, Long-Haul Survivor

Barbara Gardenhire-Mills, 52, says that doctors focused on her age and weight to make assumptions about her health history, activity levels, and abilities. “All he saw was a Black woman complaining about pain... He told me to go home and take a Xanax.” She felt like she had to work harder to prove that the virus caused her current symptoms. Pixie explains that people of color and those who who present as femme experience higher rates of mistreatment by medical professionals.

Pixie says, "This impacts some people more than others." Someone with good insurance will have multiple options covered under a health plan and is more likely to feel empowered enough to seek care elsewhere. Those with fewer covered providers or no insurance, limited time off from work, or fewer funds to pay for out-of-pocket expenses are less able to seek a second opinion.

Long-haulers should pursue care in the ways that feel right for them. For many, that will be a hybrid model. Medical providers from most disciplines and various kinds of mental help providers offer telemedicine, house calls, and more conventional, office-based visits.

Promoting Accessibility

Pixie explains that being living with disabilities in a society that doesn't foster accessibility is always a mental strain. Long-haulers might need to plan new routes or ask about elevators and other accommodations in medical facilities or workplaces. Facing the barriers that other disabled people have continually lived with can be a shock.

Pixie says, "A lot of people don't know how to ask for help, how to receive it, or even that asking for help is okay." Even though it's sometimes hard to seek support, it's an important first step.

Many people don't realize that resources are available at work or school. Pixie highlights that the Americans With Disabilities Act protects people with physical and mental health needs, and any accommodation can be requested. Employers and organizational leaders should reconsider policies that impose unnecessary restrictions so people with a variety of needs and disabilities are more affirmed and supported.

Fizur reminds people to identify triggers and monitor symptoms, seeking accommodations that work proactively around symptoms and eliminating triggers when possible. Delegate tasks or break them into smaller chunks as needed. Brainstorm creative solutions that respect your limitations and best utilize your strongest skills.

Fizur also reminds allies that disabled people should lead efforts to enact systemic change, "Let them educate you." People living with pre-pandemic disabilities might have resources and tips for navigating the needs of long-haulers, and they also have a clearer understanding of the ways cultural norms need to shift. Their experiences highlight that change was necessary long before COVID-19.

What This Means For You

Long-haul COVID impacts multiple body systems, often creating a variety of symptoms that will take patients time to adjust to. Be patient with yourself if you're adjusting to health changes, and check in with those who are if you hope to be an ally.

Your mental health is likely taking a toll, but therapy and other solutions are available. Advocate for systemic changes that will promote accessibility and equity for all—starting with eliminating everyday barriers that put a strain on mental health.

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.

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Article Sources
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  1. Centers for Disease Control and Prevention. COVID-19 and your health. Updated March 23, 2021.

  2. Elkind M, Cuchhiara B, Koralnik I. COVID-19: Neurologic complications and management of neurologic conditions. UpToDate. Updated June 2021.