Foundation Guide

A Tour of Our Global Community of Giving

Foundation Guide

A Tour of Our Global Community of Giving

Living with Uncertainty – The Reality of Long Covid and Its Stigma


When you get sick, one of the first things to consider is how long it will last. If you’re relatively healthy, a cold usually goes away within a week to 10 days. If you have the flu, symptoms typically last five to seven days. Even when feeling awful, you know you will overcome the illness with medical help or symptomatic treatments, rest, and natural immunity. We’ve all experienced this. But imagine not knowing when or if you’ll ever heal completely. That’s the reality for people with Long Covid. 

This blog explores what Long Covid is, its symptoms, and the stigma and skepticism attached to it. It also identifies some organizations working to improve the lives of those with Long Covid.

What is Long Covid?

Most healthy people who get Covid-19 heal after a few days or weeks after contracting the virus. You can generally expect a full recovery within 12 weeks or less. However, for some people, the symptoms last longer, or they begin developing new symptoms. When this happens, it’s known as Long Covid. 

According to the World Health Organization (WHO), Long Covid is defined by symptoms that start around three months after having Covid, the symptoms last for at least two months, have no plausible explanation and are not associated with another health condition. The symptoms can fluctuate over time or relapse. 

How Long Does Long Covid Last?

In some reports, the symptoms of Long Covid last from three months up to two years or more – it varies between people. Because it is a relatively new condition and potentially underreported, no concrete statistics or facts are available on how long it lasts. Additionally, as with the duration, the symptoms of Long Covid are wide and drastically varied.

Symptoms of Long Covid

The symptoms of Long Covid can vary and may affect multiple organ systems, including the respiratory, cardiovascular, neurological, and immune systems. Common symptoms reported by individuals with Long Covid include:

  • Fatigue and weakness
  • Shortness of breath or difficulty breathing
  • Chest pain or tightness
  • Joint or muscle pain
  • Difficulty sleeping or insomnia
  • Brain fog or difficulty concentrating
  • Memory problems or forgetfulness
  • Headaches
  • Dizziness or lightheadedness
  • Loss of taste or smell
  • Palpitations or rapid heart rate
  • Gastrointestinal symptoms such as nausea, vomiting, or diarrhea
  • Skin rashes or lesions
  • Mood changes such as depression, anxiety, or irritability

Foundation Guide - Long Covid research

According to a statement by the World Health Organization (WHO), symptoms of Long Covid affect 10–20% of people infected by Covid-19. Furthermore, research by UCLA revealed that over 30% of people hospitalized with Covid-19 develop Long Covid. And yet, there is skepticism and stigma associated with this condition. 

The Stigma And The Solution

Most people with Long Covid face stigma and skepticism from friends, family members, colleagues, the general public, and even medical professionals. According to research, 95% of people with Long Covid claim to have experienced at least one type of stigma.

Some doctors question whether they’re really sick, while Long Covid sufferers deal with months, if not years, of debilitating symptoms. Sadly, some sufferers go from doctor to doctor, not knowing or not believing they have Long Covid. It results in them not getting treatment for this condition’s physical, mental, and emotional effects. 

Thankfully, some organizations are working to help people with Long Covid. Here are some of them and what they are doing to help:

The Long Covid-19 Foundation

The Long Covid-19 Foundation is a non-profit organization that supports research and advocacy efforts related to Long Covid. Its mission is to promote awareness of Long Covid and provide resources to patients, healthcare providers, and researchers. 

The foundation also conducts surveys and studies to understand better the long-term impacts of Covid-19 on patients’ health and well-being. The Long Covid-19 Foundation relies on public support and donations.

Long Covid Families

The Long Covid Families website provides information and resources to help families cope with the impacts of Long Covid. It offers guidance on caring for someone with Long Covid, managing symptoms, finding healthcare providers, and accessing support services. The site also provides a platform for families to share their experiences and connect with others who are going through similar challenges.

This allows peer support and a community built around a shared experience. Community activities include art workshops and somatic practices that address the trauma of illness, resources for doctors, caregivers, and families, and workshops that foster connections within families. 

The Solve Long Covid Initiative

The Solve Long Covid Initiative is a program launched by MIT that brings together experts to better understand and develop practical solutions for Long Covid. 

Solve Long Covid supports research, develops interventions and treatments, provides education and resources, and promotes awareness and advocacy for Long Covid. The initiative also strives to create empathy for sufferers and emphasizes the urgent need for research into this complex disorder. 


Many medical conditions have some stigma and skepticism attached to them, for example, depression, chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity (MCS), and Lyme disease. Long Covid is no exception. It’s crucial to spread awareness of this condition and promote empathy for those with it, as it can seriously threaten those diagnosed with it.

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