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Introduction

Invisible Disability is the notion that a person may not be immediately perceived as disabled when in fact they are. Depending on an academic's conceptualization of it, this usually includes those who are chronically ill and are neurodivegent. Disability can be percieved as deviant because it exists separately from societal norms. And the general stigmatized view of disability as something “other” leads to ableism and often microagression. These disabilities included, but are not limited to Fibromyalgia, Endometriosis, Rheumatoid Arthritis, ADHD, Crohn’s Colitis, and Diabetes.

However, even though disability is seen as deviant, it is not uncommon for people to have some sort of hidden disability. According to the CDC, roughly 10 percent of the US population (or 61 million people) have an invisible disabilty. When people think of the word disability, they probably will not picture someone who is seemingly able-bodied. It is important to expand our idea and perception of disability to be a better understanding and accomodating society. 

I chose to look into Invisible Disability for this project because it is personal to me, but also, so many people hold this identity, and I have noticed that it is not talked about enough in general conversation and in academia.  The research questions I used to guide this project were: (1)Prior to diagnosis, how do those with a disability navigate the healthcare system to have their symptoms acknowledged? (2) How do those with invisible disabilities form identity and community with the influence of their community and social media? (3) How do these people deal with microaggressions and ableism?(4) Do those with an invisible disability struggle with their internal ableism? If so, how?

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Glossary

Ableism: Discrimination and prejudice against disabled people

Compulsory Able-Bodiedness: The pressure placed on individuals to conform to society's view of able-bodiedness, even despite the difficulties in doing so.

Impairment vs Disability: Impairment focuses on the biological/functional aspect, while disability is the social/environmental response to the impairment.

Microaggression: An action or comment with an underlying prejudiced attitude toward a certain group of people.

Invisible Disability: A condition that affects a person's daily life, but is not immediately apparent to others. Also known as hidden/nonvisible disability.

Identity First Language: Emphasis of a person's disability as central to their identity; "disabled person".

Person First Language: Emphasis on the individual over the disability. Expressed more as a characteristic than a central part; "person with a disability".

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Hidden Disabilities Sunflower Website

Goals of this movement/organization are to:

Make the invisible visible

A space to inform and be informed

To encourage inclusivity, acceptance and understanding.

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Social Media Activism and Women’s Health: Endometriosis Awareness and Support

“Social Media Activism and Women’s Health: Endometriosis Awareness and Support” looks at how social media users–specifically on instagram–talk and advocate for their disease and interact with others.This quantitative study analyzes the ways people use the digital sphere to raise awareness of their disease with hopes to lead to increased research on it and resources for those who have it. 

The authors used quantitative software to analyze 10,000 public instagram posts from April 2023 to February 2024, and the research team utilized the qualitative method content analysis for 1000 of the posts with a grounded theory approach.

The team found 4 commonly expressed themes of the post. The first category was “living with endometriosis”, the second “pregnancy and endometriosis", third “awareness and empowerment” and the fourth one was “women’s health and wellbeing”. Of these themes “living with endometriosis” was the most popular and “pregnancy and endometriosis” the least popular. Furthermore, the most common word associations they found were chronic and pain, women and health, and invisible and illness. 

Endometriosis is called the “career women’s disease”, and as existing literature regarding women’s rights and women’s health, this also highlights how the symptoms women experience are underplayed by the community and doctors. “Other women with endometriosis discussed how their family members told them their symptoms were a standard aspect of the female experience, and even their doctors told them their symptoms were normal”.

Seo, Hyunjin, K. Macy Burket, Moses Okocha, Huong Ha, Rim Chaif, Nazra Izhar, Michaella Barros Coelho, Blessing Jona, and Azhar Iqbal. 2025. “Social Media Activism and Women’s Health: Endometriosis Awareness and Support” Digital Health. 11:1-12.

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An Instagram reel raising awareness about Endometriosis and what it is like to have it.

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Book Recommendations on Disability

Disability Visibility by Alice Wong

Care Work: Dreaming Disability Justice by Leah Laksmi Peipzna-Samarasinha

Disfigured: On Fairy Tales, Disability, and Making Space by Amanda Leduc

Sitting Pretty by Rebekah Taussig

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A photographer sharing the intersection of her queerness and hidden disability

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“We don't have a box": Understanding Hidden Disability Identity Utilizing Narrative Research Methodology

“We don't have a box": Understanding Hidden Disability Identity Utilizing Narrative Research Methodology” explores how those with non-apparent physical disability interpret and incorporate their disorder into their identity, and to what extent. She sought to learn how specifically those with invisible disabilities thought of the terminology and categorization of disabled in relation to themselves.

The author utilizes narrative research methodology for this research project because she thought that it was the best fit as narratives are extremely important to understanding but also retelling and expressing our identities. In doing this, she interviewed 6 participants, 3 women and 3 men.

After completing the interviews, she divided what she found in the data into common themes under a larger category expressed by the participants. The first theme was a distaste for the word because they feel it emphasizes a person based on what they can not do. The 2nd one was that most did not like the binary category of disabled vs nondisabled because they felt it didn’t best describe their situation. One went on to describe a new category called bi-abled. The third one was that people with hidden disabilities–especially as kids–try hard to be able to fit in with the normal people, even if it physically hurts them. A participant from the study said the following: “I didn't want to be different. I didn't want anybody to think there wasn't anything I couldn't do. I didn't want anybody to treat me differently or special”. The idea of compulsory able-bodiedness is expressed by participants as a way of survival to avoid bullying.

Burke Valeras, Aimee. 2010. “We don't have a box": Understanding Hidden Disability Identity Utilizing Narrative Research Methodology” Disability Studies Quarterly. 30(3/4). 

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An online creator reflecting on what it was like being diagnosed with a chronic illness/disability at such a young age.

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Harvard Medical School Article

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Ableism in Academia: Where Are the Disabled and Ill Academics?

“Ableism in Academia: Where Are the Disabled and Ill Academics?” looks at issues regarding high workload and pressure in higher education in the United Kingdom within the context of disabled academics. The two researchers aim to raise awareness of academics who live with a chronic illness or disability because their voices are not often valued. 

Brown and Leigh argue that the biological model and social model of disability should not be entirely separated because “disability reflects the social and environmental response to the biological and functional”. Disabledness is deviant, and due to this, ableism is normalised in our society. They claim that if we reject ableism, academics with disabilities would feel comfortable with disclosing their disability. Some worry about disclosing because they do not want to face consequences regarding obtaining tenure and or being taken seriously in their field. Brown and Leigh call for a shift in our understanding of disability and of our view of it related to academics: “Academics need to be seen not as the privilege elite sitting in the ivory tower of scholarship, but as individuals who, when it comes to navigating workplaces, may also be marginialised and whose voices may remain equally unheard.”

Brown, Nicole, and Jennifer Leigh. 2018. “Ableism in Academia: Where Are the Disabled and Ill Academics?” Disability and Society. 33(6): 985-989.

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Invisible Disability Statistics

Kent State University Equal Access Cooperative

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"You Look Fine!”: Ableist Experiences by People With Invisible Disabilities

“You Look Fine!”: Ableist Experiences by People With Invisible Disabilities” looks at how those with hidden disabilities experience ableism. The researchers hoped to develop a more nuanced understanding of this issue to know how to best support the disabled community. Theory is important, but so is practice. 

Back in 2014, the team interviewed 14 participants ranging from the ages of 19 to 55 with a variety of different non-visible diseases like rheumatoid arthritis, deafness, liver disease, HIV, and multiple sclerosis, among many more. To develop a connection with the people, the interviewers shared that they too had a disability considered invisible. 

After the completion of interviewing and coding, 4 common themes were found. First, the policing of bodies. Many of them expressed how others will approach them with judgments, mentioning that they are lazy or not disabled enough to be using accommodations. Second, participants expressed a tension in roles. The struggle between feeling the need to educate others versus the constant exhaustion of being the “disability educator”. Thirdly, most of them talked about a desire for justice. This is often seen in the fight for accommodations and raising awareness of invisible disabilities. A participant from the study said, “And it’s because you can’t see or... You take for granted a body able to perform certain things that even when the manifestations of an invisible disability are apparent, because of the take-for-granted nature of ableism, they get glossed over.” Lastly was the notion of internalized ableism. From the 14 participants, this was expressed in several ways, including mentioning the struggle of the term disabled, devaluing their diagnosis, and talking about being lucky that their disability is not as severe as others. 

Kattari, Shanna K., Miranda Olzman, and Michele D. Hanna. 2018. “You Look Fine!”: Ableist Experiences by People With Invisible Disabilities” Journal of Women and Social Work. 33(4): 477-492

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A skit joking about one's internal ableism toward themself (devaluing/denying their disability)

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Spoon Theory

Spoon Theory is a metaphor used by chronically ill and or disabled folk to explain to people the experience of having limited energy to do things throughout the day. You have a finite amount of spoons, so you have to consciously and carefully decide how to spend them. Not everyone has the same amount of spoons; a person can have a different number depending on the day.