Shining a Light on the Incredible Perseverance and Courage of People Living with Illness and Pain.
It all came crashing down in 1991. First, her legs became paralyzed and then, she received a diagnosis of primary progressive multiple sclerosis (MS), followed by a 10 day hospital stay. She slowly regained the use of her legs, yet the bone-crushing pain, fatigue and cognitive impairments did not dissipate.
We met in 1992. Sherri was a customer of mine at an electronics store I was managing. Wow, was I smitten. We met again at a singles group at her church; all of the guys were surrounding her. Did I even have a chance? Afterwards, everyone went out together to a local restaurant. I, of course, sat across from her. All of the other guys who had been interested in her disappeared when they heard the words, “MS” and “Disabled.” Sherri figured she would tell me the truth right away, and maybe save her the pain of another relationship lost.
I was not deterred. I was falling head over heels in love. She had been a model, a beauty queen, an actress, a singer with the voice of an angel, a cheerleader and someone everyone liked and looked up to. To me, she was still all of these and more. She was funny and intelligent, earning three college degrees, drop dead gorgeous and caring and loving of others.
Shortly after we started dating in 1992, Sherri was also diagnosed with Late Stage Chronic Lyme Disease, which was traced back to when she was bitten by a tick while visiting Arkansas at the age of 14. She had been sick on and off since then, but no one knew why. She was still active, passionate and hard working until her body finally gave out when she was 27 years old in 1991.
We were married on September 4, 1994. We were in love. She started writing about her journey in pamphlets. She wrote about MS to help explain to family and friends about her illness. She wrote about how people didn’t understand why someone who appeared normal was allowed to park in disabled parking. She wrote about how appearances do not always tell the story on the inside. In 1996, she finally thought of a label that described her condition – she had an, “Invisible Disability.” I thought, “Wow! Your description really makes since!” Soon thereafter, I took some of her writings and posted them on a website, called The Invisible Disabilities Advocate.
Therefore, in 1997, the Invisible Disabilities Association (which was originally called The Invisible Disabilities Advocate) was launched. I had no idea that hundreds of thousands of people from around the world were dealing with their illnesses and pain, and how people did not understand and in many circumstances, believe that they had a disability because of the invisible nature of their symptoms.
Along with my wife, I wrote the booklet, “But You LOOK Good – How to Encourage and Understand People Living with Illness and Pain.” IDA has sent more than 21,000 copies worldwide. Our organization continues to grow and support people from around the world with a message of understanding and encouragement; and IDA comforts those living with illness and pain by letting them know that they are not alone. IDA is also educating families, friends, co-workers and caregivers that even though a person’s symptoms may not be visible, they are very real.
IDA reaches around the globe with stories of suffering and triumph. We created www.InvisibleDisabilitiesCommunity.org as a supportive place to share the difficulties and to encourage people touched by illness, pain and disability. Our organization recently launched our second YouTube channel, www.InvisibleNoMore.TV, which brings to life the journeys of many living with invisible disabilities.
- Learn about Matt Barrett’s amazing story of lifelong battles with 11 types of cancer with more than 1,700 surgeries, as well as his struggles with homelessness throughout much of his adult life.
- Listen to Lori Frisher, a cancer survivor who was once hearing impaired and through cutting-edge technology, is becoming INVISIBLE NO MORE(SM) as she hears the sounds we take for granted.
- Be moved by the story of former Captain Luis Carlos Montalván and his service dog, Tuesday and their journey together with Post-Traumatic Stress Disorder (PTSD) and Traumatic Brain Injury (TBI).
- Be inspired by former World Series Champion Ed Hearn as he shares about his life after three kidney transplants and skin cancer.
- Read about Angela Pierce who survived a 130 foot free fall in a climbing accident, as she shares about living with a Mountain of pain.
These stories and many more are chronicled, as well, on www.InvisibleDisabilities.org
“Believing a loved one when they say they are sick or in pain is the most important thing we can do. Just because we can’t see from the outside, what they are battling on the inside doesn’t mean it doesn’t exist. Belief, validation and support can give a friend or family member the strength they need to continue the fight!”
Take the time in this New Year to encourage and believe a loved one living with illness and pain. Do not allow them to live in isolation anymore. As a society, we need to love first. Join IDA in envisioning a world where people living with illness, pain and disability will be INVISIBLE NO MORE(SM).
JOIN US IN DENVER ON OCTOBER 14, 2012. IDA wants you to “Join the Expedition.” Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!
ABOUT THE INVISIBLE DISABILITIES ASSOCIATION
The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more. Visit us at: www.InvisibleDisabilities.org
This article was first published on Disability.Blog by Disability.gov. January 4, 2012.
Join us for Invisible Disabilities Week every October! Don’t miss the Annual IDA Award Gala and the Brain IDEAS Symposium.
2010 About the Invisible Disabilities Association – IDA Founder and President, Wayne Connell