The Long Covid Survival Guide

1. Long COVID is a Systemic Failure, Not a Personal One

Women of color are unsafe in our health care system—we are not believed and often treated with suspicion.

Systemic Injustice. The book emphasizes that the challenges faced by Long COVID patients, especially women of color, are not individual failings but stem from systemic biases within healthcare. These biases lead to disbelief, inadequate care, and poorer health outcomes.

Disparities in Care. The book highlights the disproportionate impact of COVID-19 on Black and Latinx communities, attributing it not only to comorbidities but also to the dismissal of their symptoms by healthcare providers. This systemic failure results in delayed treatment and increased mortality rates.

Challenging Stereotypes. Long COVID symptoms, such as fatigue and cognitive dysfunction, often mirror stereotypes about marginalized groups, leading to further disbelief and inadequate care. This underscores the need for systemic interventions to address these biases and ensure equitable access to healthcare.

2. Community Care is Essential for Survival

When you’re struggling alone, desperate for information, all you really need is one person who understands and believes you.

Power of Connection. The book underscores the importance of finding community and peer support for Long COVID patients. These connections provide validation, understanding, and practical advice that can be crucial for navigating the illness.

Breaking Isolation. Community care helps break the isolation that many Long COVID patients experience, offering a sense of belonging and shared experience. This support can be especially vital when facing disbelief or dismissal from healthcare providers.

Mutual Aid. Community structures can provide essential resources and support, filling the gaps left by inadequate governmental and nonprofit systems. This mutual aid can include emotional support, practical advice, and advocacy assistance.

3. Medical Gaslighting is Real and Harmful

On day fifty-three of fevers, difficulty breathing, no smell or taste, crippling pain, headaches, chest aches, cycling oxygen levels, vomiting, and feeling like my body was on fire, I stood at my bedroom mirror and put on makeup so a hospital would treat me like a human.

Dismissal and Disbelief. The book highlights the pervasive issue of medical gaslighting, where healthcare providers dismiss or invalidate patients' experiences, particularly for women of color and those with invisible illnesses. This can lead to delayed diagnoses, inadequate treatment, and further emotional distress.

Internalized Doubt. Medical gaslighting can cause patients to doubt their own experiences and question the validity of their symptoms. This can lead to further isolation and difficulty advocating for their own healthcare needs.

Finding Validation. The book emphasizes the importance of finding healthcare providers who listen, believe, and validate patients' experiences. This validation can be crucial for maintaining mental health and pursuing appropriate treatment.

4. Dysautonomia is a Common but Complex Condition

Dysautonomia doesn’t just cause dysfunction in the body parts it controls—heart, intestines, sweat glands, bladder, pupils, and blood vessels—it also causes trouble with communication between the parasympathetic nervous system and sympathetic nervous system, often leaving patients with their sympathetic nervous system “locked on,” or in a lengthy state of fight-or-flight.

Autonomic Dysfunction. Dysautonomia, a dysregulation of the autonomic nervous system, is a common condition among Long COVID patients, affecting various bodily functions such as heart rate, blood pressure, and digestion. This can lead to a wide range of symptoms, including fatigue, brain fog, and orthostatic intolerance.

Types of Dysautonomia. The book discusses two common types of dysautonomia: neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS). These conditions can significantly impact a person's ability to be upright and engage in daily activities.

Management Strategies. While there is no cure for dysautonomia, the book offers various lifestyle and pharmacological treatments to manage symptoms, including compression gear, postural adaptations, hydration, salt intake, and medications to regulate heart rate and blood pressure.

5. Pacing and Radical Rest are Vital for Long-Haulers

I have had to learn that recalibration is more important than rigid notions of recuperation.

Recalibration over Recuperation. The book emphasizes the importance of recalibrating habits and expectations rather than adhering to rigid notions of recuperation. This involves learning to pace activities, rest when needed, and adjust daily life to accommodate the fluctuating nature of Long COVID.

STOP. REST. PACE. The book highlights the #MEAction campaign's guiding wisdom: STOP, REST, and PACE. This involves ceasing harmful habits, prioritizing rest, and proceeding with daily activities when energy allows, while planning and adjusting days with this rhythm in mind.

Mindfulness and Acceptance. The book encourages readers to embrace mindfulness and acceptance of their current limitations, rather than striving for unattainable goals. This involves reconceptualizing fatigue as something more than a lack and finding ways to be without doing.

6. Mental Health Struggles are Valid and Deserve Attention

Long COVID is a yo-yo, and that’s the most demoralizing part about it.

Mental Health Toll. The book acknowledges the significant mental health challenges faced by Long COVID patients, including depression, anxiety, and PTSD. These struggles are often exacerbated by medical gaslighting and the lack of understanding from others.

Seeking Support. The book emphasizes the importance of seeking mental health support, whether through therapy, support groups, or medication. Finding a therapist who specializes in chronic illness and disability can be particularly helpful.

Self-Compassion. The book encourages readers to be kind to themselves and acknowledge the validity of their experiences. This involves setting boundaries, advocating for their needs, and redefining their identities in light of their new limitations.

7. Knowledge is Power: Research and Self-Advocacy are Key

Anyone who says they know how to cure Long COVID right now probably doesn’t know anything at all or is trying to sell you something.

Informed Self-Advocacy. The book emphasizes the importance of educating oneself about Long COVID and related conditions. This knowledge can empower patients to advocate for themselves in medical settings and make informed decisions about their care.

Navigating Research. The book provides guidance on how to navigate research studies, including understanding research questions, designs, and findings. It also highlights the importance of considering the source of funding and the involvement of patients in the research process.

Patient-Led Research. The book celebrates the role of patient-led research in advancing our understanding of Long COVID. By sharing their experiences and conducting their own studies, patients can contribute valuable insights and drive progress in the field.

8. Disability Justice is Essential for Long COVID Advocacy

If you think no one cares about you, you might be right . . . and you might need to do it yourself.

Intersectionality. The book emphasizes the importance of disability justice, which recognizes the intersectionality of disability with other forms of oppression, such as racism, sexism, and ableism. This framework calls for addressing systemic barriers and promoting equity for all.

Challenging Ableism. The book challenges ableist assumptions about productivity and worth, encouraging readers to embrace their limitations and redefine success on their own terms. This involves rejecting the pressure to "recover" and instead focusing on managing symptoms and improving quality of life.

Building Solidarity. The book calls for building solidarity across different communities of chronically ill and disabled people. By sharing experiences and working together, we can create a more just and equitable world for all.

9. Long COVID is a Mass Disabling Event

Long COVID is still widely misunderstood.

Scale of the Crisis. The book acknowledges that Long COVID is a mass disabling event, affecting millions of people worldwide. This underscores the urgent need for increased awareness, research, and support for those living with the condition.

Systemic Response. The book calls for a systemic response to Long COVID, including increased funding for research, improved access to healthcare, and policies that support disabled people. This requires a shift in societal attitudes and a recognition of the value and worth of all individuals, regardless of their health status.

Community and Connection. The book emphasizes the importance of community and connection in navigating the challenges of Long COVID. By finding support and solidarity with others, patients can feel less alone and more empowered to advocate for their needs.

10. Long COVID is a Family Affair

I am forever altered by my illness experience.

Impact on Loved Ones. The book acknowledges that Long COVID affects not only the individual but also their families and loved ones. Caregivers often face significant challenges in providing support and managing their own well-being.

Reciprocity and Care. The book encourages readers to cultivate reciprocal relationships based on care, affection, recognition, respect, commitment, and trust. This involves setting boundaries, communicating needs, and offering support to others in the community.

Redefining Relationships. The book suggests that Long COVID can be an opportunity to redefine relationships and prioritize what truly matters. This may involve letting go of old expectations and embracing new ways of connecting with others.

Last updated: March 17, 2025