“Humans of Chronic Illness” is our take on the popular “Humans of New York” photoblog. The aim of this archive is to show the faces and stories of those suffering from ME/CFS, Long Covid, and other post-infection diseases so that those who are in charge of allocating research funds cannot deny the widespread devastation this disease has inflicted on so many patients, caregivers, and families.
Your story makes a difference! Each story raise awareness of these devastating diseases — ultimately increasing research funding and leading to answers for our community. Submit your story in one of these categories:
Lived Experience
At Solve M.E., we know it’s so important to share personal experiences of complex, chronic illnesses to increase understanding and improve awareness. Through campaigns like Humans of Chronic Illness, we hope to elevate the voices of all individuals in the post-infectious chronic disease community space, such as: ME/CFS, Long Covid, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos Syndrome (EDS), hypermobility spectrum disorder (HSD), and mast cell activation syndrome (MCAS). It has been our mission to increase federal funding dollars and research solutions that will make ME/CFS, Long Covid, and other “long haul” diseases more diagnosable, better understood, and treatable.
- ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and is often triggered by an infection. This disease affects as many as 24 million people across the world. People with ME/CFS experience a wide spectrum of disability, ranging from mild symptoms to those who are unable to work at all. No two experiences with ME/CFS are the same. - Long Covid
While most patients recover from COVID-19, as many as half experience lingering symptoms six or more months after their initial infection. Long Covid is the patient-preferred term used to describe this experience of post-infection illness. Long Covid includes a broad range of symptoms that can be disabling and prevent recovery to pre-infection health. Raising awareness of this public health crisis is critical to making sure that those suffering get the support they need.
CAREGIVERS AND LOVED ONES
These diseases also have an immense impact on the lives of family and friends. Caregiving support is essential for many suffering from ME/CFS, Long Covid, and other post-infection diseases. Some individuals face severe symptoms that leave them frequently bed-bound and require assistance with everyday activities such as eating, standing, or bathing. Caregivers and their experiences give us insight into navigating the emotional, logistical, and legal challenges of severe illness.
MISINFORMATION AND DISCRIMINATION HURTS
ME/CFS Long Covid, and other infection-associated complex chronic illnesses are not psychosomatic or psychiatric in nature. For decades, mischaracterization of post-infection diseases has profoundly impacted scientific research and medical care, leaving patients misunderstood and without the support they need. Many ME/CFS patients, for example, have even been falsely advised to pursue graded exercise therapy, or GET, which has actually been shown to exacerbate symptoms. Diagnosis can be delayed by medical gaslighting and dismissal of symptoms. Patients of Color face racism and discrimination that greatly impact their health outcomes. If you have received harmful or misleading information about your illness, we want to hear from you.
A few suggestions:
- The most impactful stories are brief- 500 words or less. We may edit your story for brevity, clarity, or to remove identifying information.
- The best stories share your personal experiences and do not read like a medical chart. How would you describe your journey to a friend? What is your life like with the disease? How has it affected those around you?
- Please upload a photo. It’s powerful to put a face to each story.
- We will only publish your first name and the first letter of your last name. If you have a different preference, please add a note to the top of your story.
Please contact us with any questions at solvecfs@solvecfs.org.
We can’t wait to read and share your stories!
