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Living Life With an Invisible Disability

According to the Invisible Disabilities Association (IDA), an invisible disability is a physical, mental, or neurological condition that is not visible from the outside – yet can limit or challenge a person’s movement, senses, and activities. Some examples of conditions that may be considered an invisible disability include anxiety and depression, chronic illness such as fibromyalgia and diabetes, hearing loss, vision loss, autism, heart conditions, and brain injuries. People who experience an invisible disability are sometimes prone to judgment and misconceptions from others. While it is difficult to quantify the exact number of people in the U.S. living with an invisible disability, research from the organization Disabled World estimates 10% of Americans experience a condition that could be considered an invisible disability. 

Tim McKernan is the Director of Policy and Advocacy at ABLE-NH. His work is focused on the policies and legislation that impacts people with disabilities in our state every day. One reason this work is so important to Tim is that he experiences Attention Deficit Hyperactivity Disorder (ADHD), autism, and Post-Treatment Lyme Disease (which has become more profound over time). While people may look at him and not know that he experiences any disabilities – Tim has experienced some of the same challenges that people with a visible disability face such as being left out because he misses social cues and being in environments that don’t fit his needs.  

“One thing having invisible disabilities has shown me is just how ableist people are. People can say things that are hurtful and not realize there is a person with a disability in the room,” Tim said. Over the years, he has become more outspoken and open about his experiences with ADHD and autism – which has allowed him to educate others who may not have someone with a disability in their lives. “Speaking up has made me stronger, wiser, and even sadder in some ways. I would like to not be invisible anymore,” he said while expressing that invisible disabilities stay invisible mainly due to ableism. 

According to Accessful.org, reasons someone may not disclose a disability include fear of being disqualified from a job position without having the chance to present oneself, being fired from a job, being bullied and/or ostracized in work and social situations, being seen as unattractive/undatable or viewed as someone who is always “in need” of some type of accommodation. 

Tim understands that disclosing means revealing a vulnerability. He feels that he has the career and reputation in the field that gives him the privilege to disclose – not everyone is in that situation. “I’m at the point where my accommodation needs outweigh any fears. Hopefully the price will not be too high,” Tim said. 

When Disclosing Is the Only Option

Nicole Sheaff has four kids, all of whom experience an invisible disability. Her son Nathan, who is now 17, has experienced being left out of social situations, seen as a ‘problem child’ by some educators and members of the community, and excluded from his community due to his invisible disability. Nathan had a difficult time developing language skills as a young kid and it sometimes takes him a little longer to understand what someone is saying. “He would get overwhelmed because people would talk too quickly and tell people to ‘STOP’ what they are saying so he could better understand it. This was interpreted as a behavioral issue,” Nicole said. She went on to explain that he would often be sent out of the classroom because he was perceived to have ‘behavioral issues’ rather than attempting to understand Nathan’s needs. 

As Nathan continued to be ostracized from his community, he developed anxiety and depression and has “felt broken” at some points. Nicole explained her family is in a position where they are forced to always disclose, or else people will have misconceptions about her son. “We almost have to prepare people ahead of time and give them a background story. He has no autonomy and anything private that he may not want to talk about is out in the open,” she said while adding, “invisible disability is tragic because you are perceived to be a certain person and that is not who you are.” 

Some reasons accessful.org gives for why someone would want to disclose their disability include: the feeling that if an employer, friend, or romantic partner is accepting and understanding of it they can feel comfortable in that relationship, the opportunity to receive necessary accommodations, and allowing others to see why someone may act the way they do. 

“Too Disabled but Not Disabled Enough”

Jess Bowen experiences Post Traumatic Stress Disorder (PTSD), anxiety, depression, and epilepsy. She said because of the way she responds to situations, people sometimes view her as being overdramatic or weak when in reality, she is acting a certain way because of her triggers. Programs such as the New Hampshire Leadership Series, and other advocacy groups have allowed her to speak out more about her invisible disabilities. 

One thing she has noticed is the misconceptions people have about particular diagnoses. “Most people expect PTSD to be something veterans and first responders experience – but if someone has PTSD and isn’t in those categories, they may have trouble understanding it,” Jess said. 

According to the organization Disability Experts of Florida, it is common for people with an invisible disability to be viewed as “not disabled enough” or not disabled in the ways people stereotypically think of a disability. Wayne Connell, founder and president of IDA has a wife who experiences multiple sclerosis, Lyme disease, and multiple chemical sensitivities. “One of the most common things my wife hears is, “but you look so good”. Even people who know and love my wife don’t always understand what she is going through, and believe that because she enjoys singing, dancing, and modeling she is not experiencing any type of challenges.” He added that common misconceptions such as viewing a person as lazy and/or unmotivated still very much exist in our society. 

Living My Life With an Invisible Disability

You may (or may not) know that I experience an invisible disability myself. I was diagnosed with CHARGE syndrome during the first year of my life which means I experience vision loss, hearing loss, and have a heart condition. Throughout the past 25 years, I have had many surgeries, doctor’s appointments, and accommodations throughout my time in school. Even though I wear glasses and hearing aids (in some settings), some people I interact with may not know I have a disability at all! 

Throughout my life, I have made an effort to speak up about my disability to receive the support and accommodations I need and educate others. When I was in elementary and middle school it was more difficult for me to speak up – but as I went through school, I became a stronger advocate for myself.

To learn more about invisible disabilities and get involved with a community of people who experience an invisible disability, visit the IDA website, Facebook page, InvisibleDisabilityProject.org, and Facebook page. Search #InvisibleDisability, #InvisibleDisabilities, and #InvisibleIllness on Instagram to find posts and stories that relate to this topic. 

 

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