A Voice for Those Living

with Invisible Disabilities

A Story of One Couple's Journey to Give a Voice to Others

Living with Invisible Disabilities

Copyright © 2005 The Invisible Disabilities Advocate

www.InvisibleDisabilities.org

From the time Sherri Connell could talk and walk, she began to sing and dance! Life was a stage to her and anyone willing to watch became her audience. She got her first horse at the age of 10 and spent many afternoons riding, racing and even performing in shows. By 13, she had a job at a pet store. Later, she was a cheerleader, worked through high school and college, sang and danced in musicals, lifted weights, rode horses, was a model and obtained 3 college  degrees. Although she had a history of a low immune system and often struggled with the flu, bronchitis, pneumonia, pain and paralysis, she still remained  active. She truly loved to work, was goal-oriented and nothing was going to slow her down!

At the age of 27, during another bout of pneumonia, Sherri suddenly became paralyzed from the ribs down, was hospitalized and was diagnosed with Progressive Multiple Sclerosis. However, Sherri was not fearful, because she figured she would just go home and rest for a couple of weeks and then return to work. Sure, the wheelchair was a new challenge, but she knew it was not going to hinder her career plans and love for singing. After all, no illness had ever kept her down before and this was certainly not going to stop her from achieving her goals!

Through a great deal of physical therapy and fortitude, Sherri did regain much of the movement in her legs, even though it is still very difficult to stand or walk. Nevertheless,  despite her utter determination, she never recovered from the disabling, extreme fatigue, headaches, pain, weakness, exhaustion, nausea, cognitive impairments and dizziness that kept her from returning to work or even functioning on her own. It was all that she could do to get a shower or go to the doctor, as she remained unable to even care for her daily needs.

One year after her hospitalization, Sherri found out that she also had Late Chronic Lyme Disease from a tick bite when she was 14. It all finally made sense to her, how her immune system was suppressed, followed by such severe symptoms. That year, she also met a very nice young man named, Wayne. Sherri was sure he would run when she told him she was ill and disabled, but much to her surprise, he  continued to pursue her. He even took her to many visits to the emergency room and long distances for surgeries. He had truly seen Sherri at her worst, but it did not seem to faze him. He never knew her as the active, energetic girl she always was, but he was able to see that Sherri was still a worthwhile, valuable person despite her disability.

Despite the seriousness of Sherri's illness, people often had difficulty understanding how she could "look good" to them, even though she was very sick. Unfortunately, because of these misconceptions, people often jumped to the conclusion that she was just being lazy, unmotivated or was not trying hard enough. For a goal oriented, talented, career driven person like Sherri, these notions were absolutely devastating. In fact, Sherri wanted her life back more than anyone as she continued to go from doctor to doctor, as well as try countless treatments, therapies and surgeries.

Unfortunately, Sherri remained plagued by hurtful comments and assumptions from those around her.  Determined to grasp how people came to these conclusions, she began writing in her journal about her losses and the responses of others. Since Sherri continued to grapple with verbally explaining to people what she was going through, she began printing copies from her journal to share with others.

One day, Wayne offered to post some of Sherri’s writings from her journal about what to say, what not to say and how to help someone living with a debilitating illness on a web page. Wayne thought it would be a great way to save her the energy trying to explain what she was going through to loved ones and to people she met. So, he posted the writings and called the site, The Invisible Disabilities Advocate®. Much to their surprise, the message spread like wildfire, far beyond just their friends and family! It did not take long for them to discover how vital this message was to millions of  others living with various chronic and long-term conditions.      

People began sending emails about how much the site had been an encouragement and comfort. What amazed Sherri was that she had thought she was the only one going through these strains in relationships. Apparently, she was wrong! Not only was she not alone, but they received an overwhelming number of visitors who told them, “You have said exactly what I have been trying to say!” or “Now I know I am not alone!” One lady wrote, “Terrific insights and communicated clearly...my husband said it finally opened his eyes to what I had been trying to say all these years. Thanks."  

To create a format that was easier to pass out to  loved ones, Wayne compiled a booklet titled, But You LOOK Good! A Guide to Understanding and Encouraging People Living with Chronic Illness and Pain. One lady wrote IDA telling them her husband got down on his knees and asked for her forgiveness after he read the booklet!

IDA continues to offer it through the non-profit organization and has distributed many copies across the globe. Neither Wayne nor Sherri are given any advances or royalties from the booklet, as the proceeds go to IDA. Wayne has also given free seminars in his community.

Wayne is the President of IDA, because he has a passion to send a message to the world that these people are not lazy malingerers! They are people who have had parts of their lives stolen by illness. They want people to see the determination in those living with debilitating conditions.

Wayne and Sherri long to stand on the mountain top to shout to those challenged by disabilities, "What courage! What strength! What perseverance! We commend you! You could give up, but you rise to fight! You are heroes!" Wayne and Sherri want everyone know that even though the mountains may seem overwhelming, those living with illness and pain are still climbing!

Sherri continues to mourn the loss of her singing,   dancing and business career. She even mourns the   ability to do things that others take for granted, like cooking, shopping and cleaning. Instead of a life on stage or climbing the ladder of a corporation, Sherri struggles just to get dressed, take a shower or go to the doctor. Nevertheless, she believes Wayne is helping them grasp a new purpose in their lives– to be a voice for others living with invisible disabilities.