The COVID-19 pandemic exposed the inadequacies of the modern world’s current approach to healthcare and research. Without warning, this new and mysterious illness took hold of the world. Some people experienced a short-lived, acute sickness, while other’s lives were turned upside down with long-lasting symptoms.  

Aside from having to take a year or so of general health during high school, most people don’t know much about avoiding illness or navigating care if they get sick. Of course, many people living with chronic conditions for years have learned that health professionals don’t know it all. Feeling your best means constantly advocating for yourself and trying lots of different things.  

For many people with long COVID or post-vaccine long haul, finding care meant diving headfirst into research, learning important terms, systems, and practices, and understanding that, sometimes, it’s OK to disagree with a provider. You know your body best; if that’s not being respected, it’s time to move on to someone else.  

Of course, having to take all this on in addition to mounting and challenging symptoms adds extra stress and can be very isolating. It’s not ideal.  

If you’re new on this journey or just want to brush up on what you know, the glossary below, defined in plain language, can help bridge the gap between provider and patient as you continue your quest for care.  

This article comes as educational material for an upcoming Kindred event focused on the important fight for equitable access to vital information, healthcare, and research opportunities for BIPOC communities.  

The event, called “The BIPOC Guide to Disrupting Research Barriers” will be held over Zoom on Saturday, October 14 at 4 p.m. ET.  Registration is required, and space is limited. Register here. 

Antibody testing 

Testing for the presence of blood proteins called antibodies used by the immune system to fight certain germs.  

Asymptomatic 

When someone with an illness isn’t experiencing symptoms. 

Autonomic dysfunction 

When the nerves of the autonomic nerve system are damaged, causing symptoms related to heart rate, breathing, body temperature, vision, digestion, and other things your body does without thinking. This is also called dysautonomia.  

Autonomic nervous system  

A network of nerves that control involuntary body processes like breathing, heart rate, and digestion, among other things.  

Cardiac effects

Issues related to the heart, like high blood pressure, heart failure, cardiac arrest, and stroke, among others.  

Clinical research 

The study of health and disease in people. Clinical research can be observational (researchers monitor participants without changing their medical care or lifestyle to assess health outcomes), or clinical (researchers set out to test a medical intervention).  

Clinical trials 

A clinical research study that tests new medical or surgical treatment or behavioral intervention.  

Cognitive impairment 

Difficulty with concentration, memory, and decision-making.  

Comorbidities 

Having multiple chronic diseases or conditions present at once.  

Cytokine storm 

A severe immune reaction in which the body overreacts and releases too many cytokines (small proteins that help control inflammation).  

Dyspnea 

The medical term for difficulty breathing. 

Dysautonomia 

Dysfunction of the autonomic nervous system. See autonomic dysfunction above.  

Endocrine system 

A network of glands that produce chemical messengers called hormones to regulate bodily functions.  

Epidemiology 

Study of diseases and how they spread, including patterns, causes, and effects. 

Fatigue 

Extreme tiredness, often due to illness or stress.  

Fibromyalgia 

A chronic condition that causes body aches and fatigue.  

Gastrointestinal (GI) symptoms 

Symptoms affecting the digestive system, like nausea, bloating, abdominal pain, and diarrhea, to name a few.  

Hematology 

Study of the causes, outlook, treatment, and prevention of blood disease.

Inflammation 

A biological response to infection or injury involving increased blood flow and immune activity, typically resulting in redness or swelling.  

Immune response 

The body's defense mechanism against foreign pathogens, including viruses. 

Immunosuppression 

Reduction in the efficacy of the immune system and your body’s ability to fight off germs.  

Long COVID or long hauler 

Ongoing, chronic symptoms following a COVID-19 infection. 

Long COVID clinic 

A healthcare center specialized in treating long COVID. 

Long-term effects 

Symptoms that last for months or years.  

Monoclonal antibodies 

Laboratory-made molecules that mimic human antibodies that fight off germs.  

Multidisciplinary team 

A team of healthcare specialists from different disciplines. 

Multisystem inflammatory syndrome in adults (MIS-A) 

A post infections complication of COVID-19 where multiple body parts (internal and external) become inflamed and swollen.  

Myalgia 

Muscle pain. 

Neurological symptoms 

Abnormalities in the brain, spinal cord, or other nerves that can result in things like muscle weakness, poor coordination, loss of sensation, and poor cognitive abilities.  

Patient registry 

A database of information about patients with specific conditions. 

Persistent 

Continuing to exist for a long time. 

Post-acute Sequelae of SARS-CoV-2 infection (PASC) 

Long-term effects after acute COVID-19 infection. 

Post-exertional malaise (PEM) 

A severe worsening of symptoms after physical or mental exertion. 

Polymerase chain reaction (PCR)  

A laboratory method to amplify small segments of DNA. 

Prevalence 

The number or proportion of a disease in a specified population. 

Quality of life 

How someone feels overall, including their physical, mental, and emotional health. 

Rehabilitation 

Process of helping someone return to normal health through therapy, exercise, and other interventions.

Relapsing-remitting 

When symptoms come and go in cycles, as with some diseases. 

Respiratory distress 

Difficulty breathing due to a medical condition. 

SARS-CoV-2 

The virus responsible for COVID-19, a member of the coronavirus family. 

Symptomatic 

When someone with an illness is experiencing symptoms. 

Tachycardia 

Rapid heartbeat. 

Telehealth 

A broad term for delivering healthcare and health education remotely, usually over the phone or computer. 

Telemedicine 

A more specific term for remote clinical healthcare using technology, usually over the phone or computer.  

Thrombosis 

Blood clot within a blood vessel. 

Vaccination strategies 

Plans for administering vaccines to a population to prevent disease.  

Viral sequencing 

The process of determining the genetic material or genome of a virus.