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But You

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52 Page Booklet for Friends and Family. What to Say, What Not to Say and How to Help!

 

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Copyright © 2006

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All About IDA

About IDA

Often the most difficult part of living with a disabling illness or injury is the lack of understanding the person encounters. Since most living with a chronic condition do not always "look” sick to us, we find ourselves struggling to believe their limitations are real. Even when our friend or family member tells us they are unable work, attend a gathering, shop, cook, clean, etc., we often disregard what they are saying, because we think they "look” fine! 

Let's face it, most people cannot comprehend what it is like to be sick or in pain for weeks, months or even years, because we are used to going to the doctor, taking some medication and soon feeling better. Consequently, unless we are educated about what life changes a chronic condition can bring, we may inadvertently treat our loved one as if they just need to "snap out of it" or "stop complaining." As a result, the only way to transform our well-meaning, but hurtful view is to understand that the illness can debilitate a person's body against their will.

Therefore, The Invisible Disabilities Advocate strives to explain that even though the symptoms from chronic illness, pain and injury may not always be obvious to us, these “invisible disabilities” are very real. IDA provides helpful links to sites and organizations of several diseases, disorders and conditions, as well as a support board. 

IDA also offers informative articles and the booklet, But You LOOK Good! that can be handed out to friends, family, support groups and even co-workers, in order to help them to understand the challenges and difficulties of living with a disease or injury that can be debilitating. But You LOOK Good! serves as a guide to understanding, encouraging and helping those who are limited by their condition. Moreover, IDA helps people see the courage and strength their loved has displayed, despite their losses, limitations and daily challenges. Proceeds from But You LOOK Good! go to IDA, a Non-Profit Organization.

Let us not treat those who are ill or have been injured as if they are just being lazy or malingering. Instead, let us take a closer look at what courage and strength it takes to live with a physical limitation! After all, they are displaying a perseverance through personal loss and an endurance despite disappointment that most people will never know!

How Did We Get Started?

 

Founder and President, Wayne Connell, saw the need to establish,

The Invisible Disabilities Advocate as a place of compassion and understanding for those living with debilitating illness, pain and injury. His inspiration to create this organization came from his wife, Sherri, who became very ill at the age of 27.

All of her life, Sherri Connell was an extremely active person who loved her careers, singing and dancing in musicals, modeling, riding her horse and lifting weights. She started having health problems when she was 14, but did not know why. Despite chronic headaches, constant bouts with strep throat, the flu and bronchial pneumonia, Sherri was an active, goal oriented "go getter." In college, she studied Music Theatre, then obtained 2 Bachelor Degrees in Business, with a Minor in Liberal Arts.

Although Sherri had enormous plans and goals, her life took an unexpected turn. Just as she was plotting out her Master's Degree, she was stopped in her tracks at the age of 27. Starting with another winter bout of pneumonia, Sherri became paralyzed and so sick she could barely sit up. She was hospitalized and diagnosed with Progressive Multiple Sclerosis and it was later discovered she also had Late-Chronic Lyme Disease from a tick bite when she was 14. The diagnosis really did not scare her, because she figured she could still work and sing from a wheelchair. Nothing had ever stopped her before and nothing was going to stop her now!

    

Much to her dismay, her health never improved, but quickly worsened. Due to extreme flu-like symptoms such as bone-crushing fatigue, severe nerve pain, cognitive dysfunctions, memory loss, dizziness, heart arrhythmias, weakness, nausea and migraines, Sherri was never able to return to work. This was extremely difficult for her, because she had been working since she was 13 and her work was her life! She did regain some of the use of her legs through much rehabilitation, but she still cannot stand very long or walk very far. Sherri's life suddenly went from "on the go 24/7" to struggling just to get to a doctor's appointment, get a meal or take a shower.

    

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. In the article, "A Private Write," Rochelle Ratner explained, "The process of forming thoughts into words and the physical act of drawing the hand across the page, typing on a keyboard, or talking into a tape recorder slows rushing thoughts and pulls the attention into focus." 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 her husband, Wayne, offered to post some of her journal entries on the internet so that they could just tell people, "Go check out the website," instead of stumbling to find the words to explain. Much to Wayne and Sherri’s amazement, as the word spread like wildfire, emails started pouring in from people around the globe. These readers who lived with various chronic conditions told countless personal stories of losing cherished relationships with friends and family members, because of the complexities of their "invisible" disabilities. Nonetheless, people were ecstatic to tell Wayne and Sherri that the journal entries had "put into words" exactly what they had been trying to say to their loved ones.

 

Wayne soon discovered there were millions of other people around the world being hurt by the same lack of understanding and belief that Sherri was experiencing. His passion quickly grew from being his wife's supporter, to being an advocate for all who are living with disabilities. Therefore, Wayne found it imperative to develop an organization to educate friends, family, coworkers, businesses and medical personnel, in order to bring lives together with compassion and understanding. As a result, he founded, The Invisible Disabilities Advocate. He is joined by several business and medical professionals to reach out to the world with IDA's message.

 

IDA's desire is to establish awareness of the incredible courage people living with chronic illness and pain display, despite their circumstances. In order to develop a greater sense of understanding, IDA  utilizes the experiences and knowledge of those living with a debilitating condition. Our goal is not to create a sense of pity, but compassion for a person's losses, respect for their courage and belief that their limitations -though unwanted- are very real.

 

Order The All About IDA Pamphlet!

All About IDA! Who We Are and Our Purpose.

Tell your friends, family and people you meet about IDA! This 3 fold pamphlet helps you spread the word about IDA, the non-profit organization that reaches out to people living with chronic illness and pain.

 

 

 

1 - Single: All About IDA $1.00
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Copyright Regulations:

ELECTRONIC DISTRIBUTION: Due to internet theft, we do not allow our articles to be distributed or published in any way by email or posting on the internet. However, you may post or email a direct link to this article or the website.

 

HARDCOPY DISTRIBUTION OR PUBLISHING: Please write for permission from IDA before you distribute this article in any way to friends, family, support groups,

co-workers, offices, foundations, etc. Publication is strictly prohibited without permission. You must request permission from IDA if you would like to publish any article, excerpts or quotes from IDA.

Please consider a donation to help with our expenses,

if you would like more than 10 copies of any article(s).

WRITE IDA FOR PERMISSION TO DISTRIBUTE OR PUBLISH CLICK HERE

 

By: Sherri Connell

But You LOOK Good! 

 

A Guide to Understanding and Encouraging People Living With Chronic Illness and Pain

 

Order Online at: www.MyIDA.org

 

To Order by Mail: Please send $5.25
(for printing, binding, shipping, etc.) for each booklet (includes postage in the US). Make the check payable to "IDA" and Send Order To:

 

IDA, P.O. Box 4067, Parker, CO 80134

 

*Note! IDA reserves the right to make changes, edits in content without notice. The booklet may differ slightly from the website! Proceeds go to IDA.

 

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