The word “disability” evokes images of wheelchairs, walkers, ramps, grab bars, and other mobility support devices. However, not all disabilities are visible. Just because you can’t see it, doesn’t mean it is not there. Often misunderstood or overlooked by society at large, those who live with invisible disabilities often face unique challenges in daily life, including skepticism, lack of accommodation, and prejudice.
The Invisible Disabilities Association defines disability as any “physical, mental, or neurological” condition that heavily impacts a person’s movement, senses, activities and day-to-day life. Over 80% of disabilities are considered non-visible, although some can manifest in physical ways at certain times—including autism, lupus, ADHD, epilepsy, depression, and PTSD, to name just a few. The disability community is massive and incredibly diverse.
Non-visible disabilities are unpredictable, which can throw a wrench in your plans, and often interfere with daily activities. On the outside, I’m the picture of health. But, beyond skin deep, an underlying condition rules me. My life story took a sharp turn in 2014. I was diagnosed with Primary Sclerosing Cholangitis (PSC), a rare autoimmune liver disease that is commonly undiagnosed or misdiagnosed.
A routine blood test showed abnormal liver functions following months of abdominal pain, swelling, jaundice (yellow eyes and skin), nausea, fever, chills, diarrhea, and weight loss. An MRI (Magnetic Resonance Imaging) and liver biopsy revealed I would need a liver transplant one day.
Ten years later, following treatment, therapy and guidance from my team of doctors and specialists, I am able to live a normal life. I have to maintain monthly lab work, clinic visits, and abdominal imaging as needed for close monitoring of my liver functions in addition to a balanced diet, regular exercise, stress management, and mindfulness.
Today, I am pursuing my Master’s degree in journalism at Craig New Newmark Graduate School of Journalism, and advocate for over 11,000 students with disabilities as the Vice Chair for Disability Affairs for the University Student Senate (USS) at City University of New York (CUNY).
You wouldn’t know I have a disability unless I tell you. So, I wear a Sunflower Hidden Disability Lanyard & ID Card that discreetly indicates I have a hidden disability. It is a globally recognized symbol that helps with the stigma that I experience when people look at me and see a healthy-looking person—not a PSC warrior—dealing with an autoimmune liver disease.
I see my hidden disability as a strength, not a setback. It’s made me a passionate advocate and voice for people with disabilities—visible and hidden. It has strengthened my resilience and cultivated the positive, optimistic outlook needed to overcome challenges because a “a calm sea never made a skilled sailor.”
Acknowledging the presence and validity of invisible disabilities is key to awareness. Many people with invisible disabilities deal with critical judgements and discrimination due to lack of understanding and information. That’s why I encourage everyone to recognize Invisible Disabilities Week from October 20–26, 2024 as an opportunity to learn about and support the experiences of your family, friends, co-workers, and communities.
While people with disabilities must be the vanguard of the fight and awareness campaign, we can all serve as essential allies. With a combination of education, understanding, and awareness, we can broaden our views on disability, help reduce stigma, misunderstanding, discrimination, and other biases that people with disabilities—visible and nonvisible—encounter.
Be kind, for everyone you meet is fighting a battle you know nothing about.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.