![]() Invisible disabilities and chronic illnesses present an additional challenge for many, because they don’t follow the “get sick, get treatment, get better” redemption arc that acute illnesses do and their severity and presentation can often change from day to day or week to week. “When your ability to live, find a home, food, and resources is tied directly to your productivity, identifying as disabled is not something that people want to do.” “Our society penalizes you for being disabled,” says writer and disability activist Imani Barbarin. And we’re socialized to believe that not having the ability to do something makes that person somehow less than someone who can. Disability is scary, because the very word implies a loss or a deficit. Of course, realizing that a condition is technically a disability and embracing it as such can be a complicated and deeply personal process. “My answer is, ‘Does it impact your life in some way? Then probably, yes.’ An invisible disability is something that you can’t see, but still hinders you in such a way that you may need accommodations.” ![]() “It’s not uncommon for somebody to get in touch with me and say, ‘I have such and such, is that invisible disability?’” says Jess Stainbrook, executive director of the Invisible Disabilities Association. The Center for Disability Rights lists the following as examples of invisible disabilities: learning differences, deafness, autism, prosthetics, traumatic brain Injury, mental health disabilities, bipolar disorder, diabetes, ADHD, fibromyalgia, arthritis, Alzheimer’s, anxiety, sleep disorder, Crohn’s disease, post-traumatic stress disorder, epilepsy, multiple sclerosis and cystic fibrosis, but there are many others. The realm of invisible disabilities, sometimes called non-apparent disabilities, covers a wide array of chronic illnesses and conditions that even those who live with them sometimes don’t think to categorize that way. Even though I wouldn’t have signed up to join, the disability community is a rich and varied one, full of unique individuals with needs and experiences that are as diverse as they are valid. ![]() That’s also why I use what’s called “person-first language,” that emphasizes disability as an identity marker and not an external factor. But once I learned to work with instead of against my limitations, I spent so much less mental energy chasing an arbitrary definition of normal that was no longer possible. House would arrive and fix what was wrong with me, then my life would go back to how it was. It’s a constant assessment that often involves uncomfortable discussions with friends and colleagues because the invisible nature of my disabilities means having to self-disclose how I’m feeling to get the accommodations I need.īefore I had a name for what was going on in my body, I imagined that Dr. Others, it’s rescheduling plans because I just don’t have the energy. Some days, that means sitting on a heating pad while I work from home. Each morning, I wake up and take stock of how I feel and what adjustments I’ll have to make as I move through the world outside my bedroom. ![]() In 2021, I contracted COVID-19 and developed long COVID, another invisible illness that has compounded my original symptoms and added a few new ones to the mix.Īll of this means I’ve had to tune into what my body needs more consistently than most people. Because it’s a diagnosis by exclusion, meaning there are no tests to confirm it, I saw two handfuls of doctors in multiple disciplines to figure out what was causing my symptoms by ruling out just about everything else. My symptoms first appeared when I was in college, but it took seven years for me to get diagnosed with fibromyalgia. This Year of Making Noise story is also part of Prevention’s We Are Not Invisible project, a series of personal and informative stories that shed light on those with Invisible Disabilities. And there are likely far more of us than that. But I’m one of millions of Americans living with an invisible disability, about 10 percent of the population, according to one Disabled World estimate. To look at me, I’m just another 35-year-old white woman, about as put together as the next person. Every time I stand, my vision kaleidoscopes to black and back again. As I write this, bolts of electric pain shimmer down my right leg and up toward my shoulder as my joints throb in time with my heart.
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