By Suzanne Stewart.
Several years ago I was approached by a YouTube channel called “Invisible No More TV”. They had seen some of my advocacy videos for patients, chronic pain, RSD/CRPS and “invisible disabilities/illnesses”. They asked me if I would like to be featured on their channel in a short video describing “invisible disabilities” and being “invisible no more.” I agreed and I’ve been featured on that channel ever since 2012. I later found out that this YouTube channel is a part of a much bigger organization called the “Invisible Disabilities Association”. The reason that I’m telling you this today is because this week is “Invisible Disabilities Awareness week”. I’ve always been a team player for IDA and have always supported them and they have always supported me, since we met in 2012.
First of all, let me explain that an “invisible disability”, according to the IDA website, which you can find by visiting: Invisibledisabilities.org, is “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker. Unfortunately, the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgments.” The Invisible Disabilities organization works tirelessly throughout the year to bring awareness to illnesses, diseases and disabilities that often times seem to go unnoticed. One week during the year, the third week of October is the time to share your journey with invisible disabilities. This year, that week is October 15th through the 21st, is “Invisible Disabilities awareness week”. During this week, we will be posing many interactive posts on Facebook, Instagram and Twitter. These are where you can share your personal stories, advocacy, favorite people, places, pets and anything else like this that you wish to share. This is YOUR week to meet new friends, post a video or share stories with others. The reason for this is that we want to show you that you are “INVISIBLE NO MORE” and just because people say “but you look good”; doesn’t mean that nothing is wrong on the inside.
This is how this week will play out: Monday was “share your story”. You can post as much or as little as you wish. You can post a photo collage with a story underneath, or you can make a *short and sweet video (about 2 minutes is best). Please note that Monday was the starting date for this activity, but you can post your story throughout the week. On Tuesday we will be sharing stories of why invisible disabilities awareness is important in your life. You can make a video or a photo collage about your life and the millions of others who live with illness and pain that goes unseen sometimes. If you have the Invisible Disabilites glow-in-dark wristband, t-shirt or lapel pin; please wear it (you can buy them at the IDA website at: www.InvisibleDisabilities.org). If you have none or some of these, you can just choose a blue hat, scarf and/or a blue shirt. Invisible Disabilities Association wants to “turn the internet blue for millions living with Invisible Disabilities. IDA is on Instagram at: www.Instagram.com/invisibledisabilities, on Twitter at: www.twitter.com/InvDisabilities and on Facebook at: www.Facebook.com/InvisibleDisabilities. You can use the tag #InvisibleDisabilitiesWeek.
Just to give you a little bit of background about I.D.A.; they were founded in 1996. Their mission is to “encourage, educate and connect people and organizations touched by illness, pain and disability around the globe”. They believe that “together we can make a difference in our communities and around the world.”
But now I just want to tell you a little bit about my friend Sherri Connell, who was an actress, dancer and loved to dance and sing. When she was 27 years old she lost the ability to take care of herself. She was diagnosed with progressive Multiple Sclerosis and she was in a wheelchair paralyzed. At first, friends and family were understanding and supportive. She has been able to regain some use of her legs with a lot of work and effort. She still finds it difficult to stand and walk around, but because suddenly the other people in her life could no longer “see” how the MS was disabling, they stopped being as understanding. It was not the wheelchair that kept her from her career, but the disabling fatigue, cognitive dysfunctions, horrible pain and dizziness too. She could not care for her own daily needs.
Sherri’s husband Wayne, decided to try and tell people; help to educate their friends and family about her disabilities and illness. He published a few writings from her daily journals onto a website. They thought long and hard and then decided on the name “Invisible Disabilities Association”. Sherri quickly found out that she was not the only one, because she received numerous emails from people all over the world. These people reiterated that they too, had felt alone and felt like nobody understood what they were going through because sometimes it was or is “invisible”. Then it became Wayne and Sherri’s passion to help others with disabling conditions by first believing them, and then by being compassionate, supportive and hopeful.
So then, in 1996, Wayne founded the Invisible Disabilities Association (a 501(c)3); with a mission to “Encourage, Educate and Connect People, Organizations Touched by Illness, Pain and Disability Around the Globe”! If you have any questions, you can reach out to Sherri Mitchell Connell or Wayne Connell on Facebook, Instagram or Twitter. You can also find them through the IDA website listed above. Let’s all have a great week of spreading the awareness of Invisible Disabilities, Invisible Pain and Illnesses that go unnoticed to others at times, but never to those of us who live with it on a daily basis.