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People with “Invisible" Diseases Struggle for Resources, Understanding

People with “Invisible" Diseases Struggle for Resources, Understanding

For many, Parkinson’s disease symptoms change throughout the day. You may be symptomatic in the morning, but feel — and appear — well in the afternoon. While showing symptoms can lead to negative stigma, sometimes appearing symptom-free causes its own problems.

NPR recently covered the challenges faced by people with "invisible" diseases, such as Crohn’s disease and fibromyalgia. Because they generally don’t require wheelchairs or other visual signs, people with such diseases often struggle to access needed services, and may even be denied workplace accommodations. The story explained:           

When a disability isn't immediately obvious, others — at work, school or even at home — sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment.

While many people with Parkinson's don't consider it a disability, there are instances where accessibility becomes important. Alice Belous blogged on asking her neurologist about getting a handicapped parking permit, to which he replied that she should not because there are “people in wheelchairs who ‘really’” needed it more. Her physical therapist eventually helped convince her to apply. Since getting the permit, strangers have given her dirty looks and asked if she really needs the handicapped space when they see her in parking lots.

Groups like the Invisible Disabilities Association are working to raise awareness that not all diseases and challenges are readily visible.

"Hopefully folks will realize that there are handicaps that cannot always be easily seen or recognized,” writes Alice. “I’m just doing the best I can. Let’s just extend some grace to one another — and ourselves.”

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