Exclusive Content

“But you look good.” “You just want attention.” “But you don’t look sick.”
 
Merriam-Webster defines believing as “to accept something as true, genuine, or real, as well as to have a firm conviction as to the goodness, efficacy, or ability of something.”
 
For me, the opposite of believing is prejudice. Prejudice is defined as “an unfavorable opinion or feeling formed beforehand or without knowledge, thought, or reason.”
 
How many times have we been frustrated and impatient as we wait for the person in the crosswalk, or at the store? They seem to walk so slowly and we are in a hurry. Why can’t they speed it up? Maybe they are in chronic pain or have a myriad of other illnesses or injuries that we cannot see. I say that we should err on the side of caution and belief first, not suspicion and prejudice.
 
Or maybe we have seen the person park in a designated accessible parking spot. Then they exit their car and proceed  without using a cane or a wheelchair, and with no noticeable signs of injury or disability. We have all seen prejudice, not belief, in action during these situations. You can finds dozens of stories about notes left on people’s windshields – notes full of anger and mistrust.
 
My wife, Sherri, used the phrase “I have an invisible disability” to describe her illness and pain in 1996. People would stare, or question, and even scream at her for parking in "handicap" spaces. She has lived with the overwhelming pain, fatigue, and neurological symptoms caused by both primary progressive MS and chronic lyme disease, diagnosed in 1991 and 1992 respectively. But, because the symptoms are not noticeable, people tend to jump to judging her first.
 
The Invisible Disabilities Association was launched more than 20 years ago, in 1996, to use Sherri’s experiences to help others. One of our first pamphlets was Don’t Judge by Appearances, addressing the issue of prejudice and misunderstandings surrounding disabled parking. The last few sentences in the pamphlet are crucial: “Therefore, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all, the people you are graciously intending to defend, may be standing right in front of you!”
 
Yet, disabled parking is only one example of the disbelief people have of those living with invisible illness and pain. Oftentimes, the person living with these problems is misjudged because of their appearance. Sherri was a model, actress, and pageant winner before she became sick. She still looks stunning and people tend to disregard when she tells them about the bone crushing pain, fatigue, and brain fog she deals with daily. We wrote the book, But You LOOK Good: How to Encourage and Understand People Living with Illness and Pain because, for some reason, people think their loved ones who look good can’t possibly be sick, or at least not as sick as they contend.
 
Another issue that comes up all too often is the belief that people living with chronic illness and pain really just “want attention,” which is not the truth in most cases. Disability and pain usually brings abandonment and isolation, not attention. The loneliness of illness and pain is very real.
 
I think of IDA ambassador and award-winning singer-songwriter Mandy Harvey. Even though Mandy is profoundly deaf, her voice is clear and beautiful. As a singer, she is often mistrusted because of her deafness. Some people can’t believe that she can sing so incredibly well. I have been on radio interviews with Mandy and I can understand why people think the way they do. How can she respond to the interviewer so quickly, she must hear something? Actually, Mandy uses a very cool piece of technology on her phone called Clear Captions. Anytime she is on her phone, the words spoken by the caller are typed on her screen by Clear Captions and Mandy then responds to the caption. Actually, it is quite exhausting for her to read and respond verbally so quickly.
 
Just because we may not understand an illness or disability, doesn’t mean we need to disbelieve people living with them. Kara O’Daniel is someone who has also felt the sting of misunderstandings regarding her disability. Kara’s brother Kyle writes the following about her:
 
“My twin sister, Kara, hasn't had the easiest go at things during the last 24 years. She has gone through a lot and handled it all with patience and grace. Through all her struggles, she has always found a way to be there for others and help as many people as she can.
 
“Her most recent endeavor is a result of this selfless habit; she is starting a career as a motivational speaker, sharing her story with those who need to hear it the most. What is this story, you ask? Well.
 
“It’s a story of 39 surgeries, endless struggles with Spina Bifida, and countless inspiration for all those who are fortunate enough to have Kara as part of their lives.
 
“Her goal is to share her story and advice with those who are in similar situations to those that she has struggled through so many times.”
 
Kara shared with me that her journey with spina bifida has been difficult because of the misunderstandings surrounding it. Kara is able to walk because of numerous surgeries and therefore people often don’t believe her. They think that all people with spina bifida must be in a wheelchair. This same misunderstanding affects people with MS. Being in a wheelchair is not always indicative of someone’s disability or even the severity of their disability. Using a wheelchair because someone is unable to walk, maybe for the moment or maybe all of the time.
 
For me, I will believe you even if I can’t see your illness and pain. Let’s believe people instead of judging them. Let’s not play armchair doctor and think we know. Let’s listen, acknowledge and learn from the people who live daily with pain, illness, and disability. They are the true experts. Let’s not judge people by how they appear or don’t appear. I love my friend, and IDA advisory board member, Peter Strople’s quote “When in doubt, love.” Let’s love, encourage, and believe people living with illness and pain. Life is struggle enough for them. Let’s not make it worse by our words and prejudice.
 
Join me in believing. Let’s all envision a world where people living with illness, pain, and disability will be invisible no more!

Wayne Connell, founder, president and CEO of the Invisible Disabilities Association, established IDA in 1996 out of the desire to educate friends and family about his wife's debilitating illness. His experience includes that of a professional, multitasking husband and caregiver with an extensive background in management, media, and technology. Wayne’s experiences fueled his passion for helping people living with illness, pain and disability.