Chronic Illness Defined: The Spoon Theory and Social Media

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As lifestyles modernize from rapidly growing technology, and health care innovations increase the human lifespan, the prevalence of chronic illness surges.

In 2002, the World Health Organization (WHO) noted that one of the greatest challenges facing health care systems in the 21st-century world would be the increasing burden of chronic disease. Yet chronic health issues, described by many as being “invisible,” may not always be apparent to the public eye — but they are prevalent.

Six in 10 adults in the U.S. have a chronic disease and four in 10 adults have two or more chronic diseases, according to the Centers for Disease Control and Prevention (CDC). There has never been a more vital time to call attention to the causes, care and culture of chronic illness.

By expanding the conversation and creating visibility, chronic illness patients have an easier time obtaining adequate resources for coping. Undiagnosed patients may be more likely to pay attention to symptoms as they emerge, and others can learn how to interact more compassionately with patients in the future.

About Chronic Illness

Dr. Bonnie Feldman, DDS, MBA, autoimmune disease advocate and digital health consultant, described chronic illness as “a long term health condition lasting more than three months that may not have a cure.” Feldman noted that many are “familiar with what we call the ‘common chronic diseases,” such as obesity, cardiovascular disease and diabetes.

Sometimes cancer is considered a chronic disease too, Feldman said.

According to researchers for Frontiers in Public Health, cancer is not always considered a chronic disease because some types of cancers have few treatment options and prove fatal in the near term.

Since chronic illnesses fall under a large umbrella, it can be helpful to understand their commonalities. Chronic disease risk factors include sedentary behavior, smoking, alcohol abuse and unhealthy diet. However, there are many other contributors when it comes to chronic illness.

The Australian Institute for Health and Welfare includes the following as common features of chronic disease:

  1. Complex causality, with multiple factors leading to their onset.
  2. A long development period, for which there may be no symptoms
  3. A prolonged course of illness, perhaps leading to other health complications
  4. Associated functional impairment or disability

These four factors aren’t always heeded by the general public, which tends to associate chronic illness with more common diseases.

Researchers who studied the way chronic disease is talked about suggested applying the Merriam Webster definition of “chronic” when determining the nature of a health issue that may be a chronic condition.

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It helps to utilize a simpler view to identify a chronic illness. A broken leg would be excluded as a chronic condition, but recurring lower back pain or hormone-related migraine headaches would qualify.

In categorizing chronic diseases under this broader scope rather than “adhering to a specific list of diseases and a specific time period,” diseases that do not make the top seven list of chronic diseases can be brought to light.

“We are not advocating for drawing attention away from heart disease, diabetes, arthritis, and COPD — the most commonly discussed chronic diseases,” research published in Frontiers in Public Health stated.

“But we are in favor of bringing more diseases (and conditions) under the umbrella, with the hope of increasing awareness, sharing knowledge, and creating a larger community of individuals working toward improving the health of those who suffer from chronic health problems.”

One of these underrecognized chronic health issues that would benefit from greater research and public attention is autoimmune disease.

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Defining Autoimmune Disease

Autoimmune disease is a subset of chronic illnesses in which the immune system mistakenly attacks the body.

Since the immune system guards against germs like bacteria and viruses, it sends out fighter cells to attack foreign “invaders” when it detects them. Autoimmune diseases cause the body’s immune system to mistake part of the body, like joints or skin, as foreign and releases antibodies that attack healthy cells.

Despite the fact that approximately 50 million Americans, or 20% of the population, suffer from autoimmune disease, Dr. Feldman noted that it is “not very well recognized or understood.”

Dr. Feldman started her career as a clinical dentist, then worked on Wall Street as an equity and hedge fund analyst. She later transitioned to become a digital health analyst at a cancer company. At that point, her second son-in-law was diagnosed with an autoimmune disease.

She approached the cancer company and asked: “Why can’t we take what you’re learning in cancer and apply it to autoimmune disease?”

The cancer company told Dr. Feldman she was crazy.

“That’s when I became an autoimmune patient advocate and consultant,” Dr. Feldman said. “I knew that someone had to reimagine research, diagnosis and care for autoimmune patients. It became apparent to me that no one was looking at it from that lens and someone needed to bring the best of conventional, functional and digital medicine to autoimmune patients.”

Now, Dr. Feldman has compiled a team of researchers and consultants working with the objective of bridging the gap across the autoimmune abyss. She believes research on autoimmune disease is at the same stage as cancer research 50 years ago.

“Cancer used to be diagnosed by body — like breast or skin cancer,” Dr. Feldman said. “Now, cancer is diagnosed by things like cell line and genetics.”

But autoimmune diseases are still diagnosed based on the specific part affected.

“For example,” Dr. Feldman said, “If a person has GI disease, such as Crohn’s disease or ulcerative colitis, which together are known as Inflammatory Bowel Disease (IBD), they see a GI doctor. But if a person has lupus or another rheumatology disease, they see a rheumatologist.”

Since research on autoimmune disease is behind in providing adequate diagnosis and sophisticated ongoing treatment plans, patients coping with autoimmune disease must often see more than one doctor, which can be both mentally taxing and costly.

“They’re underrecognized, underresearched and underfunded. It takes the average autoimmune patient three and a half years and four to five doctors just to get a diagnosis.”

— Dr. Bonnie Feldman

Dr. Feldman noted that the field has never aggregated all diseases together to look at them as a spectrum. In addition to the insistence on aggregating the data, Dr. Feldman emphasized the importance of creating comprehensive care facilities for autoimmune patients. Currently, only a few dedicated centers exist.

“I’ll call them centers of excellence,” explained Dr. Feldman. “They’re beginning to have multiple autoimmune specialists in one place for the patient — giving the patient that spectrum of specialists they get in oncology.”

Dr. Feldman is hopeful that data and science will progress, allowing more than 100 autoimmune diseases to be as recognizable as cancer. This will lead to more comprehensive care.

“Functional medicine practitioners are already working to address this issue,” she added.

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Understanding The Spoon Theory

For patients with autoimmune disease or any other chronic conditions, day-to-day life can be dictated by the illness.

Each day, there are more things to than energy to expend. The Spoon Theory accounts for this common experience among chronic illness sufferers.

“The spoon theory is a metaphor used to explain how a person with chronic and fatigue-related illness may have only a limited amount of spoons,” Dr. Feldman explained. “So, the spoons are a symbol for your energy reserve.”

Self-termed the “Spoonies,” chronic illness patients have shared their message and formed a community through online outreach. In addition to yielding understanding from those living without chronic illness, the community helps a chronic illness sufferer release the burden of guilt that can accompany low-energy days.

Chronic illness advocate and Spoonie Dawn Gibson told Healthline, “Our people often remind each other that we are not our diseases, and that’s true. But the Spoonie ethos allows me to make that separation intellectually. If my body decides that we can’t keep social plans, I know that’s not me being flaky. There’s no help for it. That eases the heavy cultural burden to just gut it out or try harder.”

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Meeting the Social Media Movement

For warriors like Gibson, overcoming societal stigmas and coming to terms with chronic illness has been aided by the plethora of resources available online.

Addressing misconceptions about coping with chronic illness, Dr. Feldman noted that since many people with chronic illness don’t “look” sick, others assume they are well. That’s where the word “invisible” comes into play.

Since these illnesses are not well understood or highly observable in public, others may treat them as though they’re faking their illnesses. Chronic illness sufferers can feel like they’re facing the condition alone.

Social media communities have established safe spaces online where chronic illness sufferers don’t have to feel like that. Instagram hashtags like #ChronicIllness, #ChronicPain, #Spoonie, #InvisibleIllness, #SpoonieLife, #ChronicallyIll, and #ButYouDontLookSick grant chronic illness patients an opportunity to find connection and feel supported.

For some, psoriasis advocate Nitika Chopra, speaking out about chronic illness has become a lifelong labor of love. After releasing an e-book and a podcast covering the topic, Chopra was inspired to create Chronicon, the first-ever chronic illness-centered conference. In the weeks leading up, individuals have been invited to share their stories in a private Facebook group.

Dr. Feldman appreciates the way online groups have raised awareness about lesser-known diseases. Patient stories online can also inform medical professionals.

“Whether it’s Hashimoto’s Thyroiditis or other diseases where there’s a lot of information emerging on the web, it’s been very helpful in writing the expanded toolkit of functional medicine,” Feldman said.

“Conventional medicine doesn’t necessarily have all the platforms to help these people with chronic illnesses,” she added. “But functional medicine practitioners are establishing programs and protocol that can be very helpful.”

It’s with hope that medical professionals and members of the chronic illness community strive to make the world a place where comprehensive care for chronic conditions is as common as the illness itself.

By Lauren Delisle

Lauren Delisle is an editor and writer for MedTruth currently working in Los Angeles, CA. She graduated from Loyola Marymount University in 2017 with a degree in Screenwriting and a minor in dance. Exploring topics of mental health, social justice, media and philosophy in her work, Lauren strives to externalize narratives that might otherwise go untold.

Originally published OCTOBER 24, 2019

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