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.
Testing for the presence of blood proteins called antibodies used by the immune system to fight certain germs.
When someone with an illness isn’t experiencing symptoms.
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.
A network of nerves that control involuntary body processes like breathing, heart rate, and digestion, among other things.
Issues related to the heart, like high blood pressure, heart failure, cardiac arrest, and stroke, among others.
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).
A clinical research study that tests new medical or surgical treatment or behavioral intervention.
Difficulty with concentration, memory, and decision-making.
Having multiple chronic diseases or conditions present at once.
A severe immune reaction in which the body overreacts and releases too many cytokines (small proteins that help control inflammation).
The medical term for difficulty breathing.
Dysfunction of the autonomic nervous system. See autonomic dysfunction above.
A network of glands that produce chemical messengers called hormones to regulate bodily functions.
Study of diseases and how they spread, including patterns, causes, and effects.
Extreme tiredness, often due to illness or stress.
A chronic condition that causes body aches and fatigue.
Symptoms affecting the digestive system, like nausea, bloating, abdominal pain, and diarrhea, to name a few.
Study of the causes, outlook, treatment, and prevention of blood disease.
A biological response to infection or injury involving increased blood flow and immune activity, typically resulting in redness or swelling.
The body's defense mechanism against foreign pathogens, including viruses.
Reduction in the efficacy of the immune system and your body’s ability to fight off germs.
Ongoing, chronic symptoms following a COVID-19 infection.
A healthcare center specialized in treating long COVID.
Symptoms that last for months or years.
Laboratory-made molecules that mimic human antibodies that fight off germs.
A team of healthcare specialists from different disciplines.
A post infections complication of COVID-19 where multiple body parts (internal and external) become inflamed and swollen.
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.
A database of information about patients with specific conditions.
Continuing to exist for a long time.
Long-term effects after acute COVID-19 infection.
A severe worsening of symptoms after physical or mental exertion.
A laboratory method to amplify small segments of DNA.
The number or proportion of a disease in a specified population.
How someone feels overall, including their physical, mental, and emotional health.
Process of helping someone return to normal health through therapy, exercise, and other interventions.
When symptoms come and go in cycles, as with some diseases.
Difficulty breathing due to a medical condition.
The virus responsible for COVID-19, a member of the coronavirus family.
When someone with an illness is experiencing symptoms.
A broad term for delivering healthcare and health education remotely, usually over the phone or computer.
A more specific term for remote clinical healthcare using technology, usually over the phone or computer.
Blood clot within a blood vessel.
Plans for administering vaccines to a population to prevent disease.
The process of determining the genetic material or genome of a virus.
Cynthia spent the last several years as a marketing specialist for minority- and woman-led non-profits and on political campaigns. After developing long Covid in March 2020, she decided to become a long Covid advocate. A year into her recovery, she worked to help guide legislative language for the Covid 19 Long Haulers Act. She wrote a digital guide for medical care for Longhaulers of color. Cynthia is proud to join the Kindred team and help cultivate a much needed unique space for the long Covid community.