Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.
In our most engaged poll yet, the Global Healthy Living Foundation’s COVID-19 Patient Support Program delved into how those with chronic conditions perceive and describe their health challenges: as illnesses, disabilities, a mix of both, or neither.
The conversation about labeling health conditions is far from straightforward. With nearly 3,000 community members chiming in, it’s clear that people’s relationships with the words “illness” and “disability” are deeply personal and multifaceted.
The central questions we explored were: How do you see yourself — as someone with an illness, a disability, or perhaps both or neither? Additionally, how do you think others view you based on your condition?
“Labels and terminology frequently shift, highlighting the need to regularly check in with our community,” says Erik Stone, Manager, Instructional Design, at the Global Healthy Living Foundation (GHLF).
At GHLF and CreakyJoints.org, our primary goal is to connect with, understand, and support our community of those living with chronic conditions. Building on that commitment, we examined these responses to better grasp how our members feel about the labels of “illness” and “disability.”
Breaking Down the Numbers
Let’s dig deeper into the actual figures from the poll.
When posed with the question, “As a person living with a chronic condition, do you consider yourself to have an illness, a disability, both, or neither?” here’s how our community responded:
- Illness: 25.6%
- Disability: 10.9%
- Both: 44.1%
- Neither: 12.6%
- I’m not sure: 6.8%
Nearly half (44.1 percent) of people feel their condition acts like both an illness and a disability. This may mean they might feel sick sometimes, but also face regular challenges in doing everyday things. One member wrote: “Arthritis is an invisible issue that causes me to be ‘disabled’ sometimes and not feel well (‘Illness’) sometimes, so I feel both terms apply.”
These findings confirm that “there’s a wide variety in how people view their chronic condition,” says Kelly Gavigan, Director, Data Management and Analytics, GHLF. “The answer wasn’t overwhelmingly for illness or overwhelmingly for disability, and so perhaps not surprisingly, close to half of the respondents reported that it is both.”
Interestingly, when asked if they believed others perceived them as having an illness, a disability, both, or neither, the responses varied:
- Illness: 23.1%
- Disability: 9.6%
- Both: 14.9%
- Neither: 27.4%
- I’m not sure: 25.0%
“These results demonstrate a real disconnect between how patients self-identify and how others identify them,” says Stone. “By diving deeper into these perceptions, we can better understand this disconnect and how it may affect the health and well-being of patients everywhere.”
Of those who participated, 1,589 provided in-depth, free-text responses to why they selected certain terms. From these detailed responses, several key themes stood out:
The Invisible Struggle
Many from our community highlighted the invisibility of their conditions, stating that while they might appear healthy outwardly, their internal struggles are real and ongoing.
As one member eloquently put it, “I look healthy on the outside but know that I am not on the inside.” Another added, “I don’t think people can SEE that I have a disability — therefore they do not think I have anything wrong with me.”
According to Gavigan, “This poll reinforced the challenges with the invisible nature of many chronic conditions, which make the conditions unlikely to be viewed as a disability by other people.”
Illness vs. Disability: The Perception Dilemma
The distinction between “illness” and “disability” was another focal point.
To many, an “illness” might sound like a temporary setback, like catching a cold. But for those living with chronic diseases, there’s a deeper divide between seeing their condition as a fleeting illness versus a long-term disability.
One member candidly wrote, “I used to think it was just an illness, but then I realized it’s not like a cold that’ll just go away.”
Another added, “Illness feels like there’s a cure coming. My disease doesn’t have that; it’s disabling.” This statement underlines the emotional weight of recognizing a condition as more permanent.
This perspective shifted for some depending on the current state of their condition, reflecting the fluid nature of chronic disease. “At this point in my life, I am disabled from both of my arthritic diseases,” remarked one individual. Yet another mentioned, “At the moment, my condition is just like an illness; I am able to do everything.”
Chronic Condition: A Preferred Term?
There was also a significant group that found “chronic condition” a more fitting description, choosing it over the labels of illness or disability. “I don’t feel ill or disabled but I am trying to manage a chronic condition,” wrote one respondent.
Another emphasized the mental health aspect: “I try to define myself as living/functioning with sometimes chronic conditions rather than as ill or disabled. Better for my mental health.”
Addressing Accommodations and Stigma
Members also brought to light accommodations for disabilities and the societal stigmatization attached to the term “disability.”
“My employers consider rheumatoid arthritis to be a disability, which allows me to have needed and protected accommodations,” wrote one member.
Another admitted: “I know I have a disability, but I hate thinking about it that way and discussing it with others because the term ‘disability’ is so stigmatized.”
Self-Perception vs. External Perception
What’s more, many respondents highlighted the importance of viewing their chronic conditions from their personal perspective. They emphasized the distinction between how they see themselves and how they believe others perceive them.
“It’s important to know how to refer to people’s chronic conditions from their own point of view and voice,” says Gavigan.
Why This Matters
Your responses show that everyone sees chronic diseases differently. It’s important to understand these views because they affect mental health, how people feel about themselves, and the choices they make about their care and support.
As we further explore the language of chronic disease, our goal remains the same: to ensure our patient community feels validated, supported, and heard. Stay tuned for more polls as we continue to explore and address this important topic.
About the Patient Support Program Quick Poll
Members of our program have underlying health issues — such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.
We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.
We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing polls by joining the support program here.
