“I can’t believe how strong you are!” “I can’t believe how hard you keep fighting!” “You are so courageous!” “You amaze me!”
Believe it or not, it is all too common for a person living with a continuing illness or pain to be treated as if they are not positive enough, do not try hard enough, do not want to get better and do not have anything to complain about.
Then again, most people cannot imagine how difficult it is to be inside a body that will not cooperate with their desires. If we would take a moment to realize how much our loved one has been through, what they go through daily, how many tests they have had, how many doctors they have seen, how many medications they have tried, how much research they have done and how much money they have spent to battle the symptoms, we would recognize our loved one’s amazing courage.
In any case, don’t most people become crabby and whiny when they get sick, even though they know they will be better in a few days? Imagine having symptoms much or all of the time. According to Pauline Boss in the Journal of Clinical Psychology, “…an ambiguous loss of long duration becomes physically and psychologically exhausting for even the strongest of individuals, couples and families.” Think of how amazing this person is for having such persistence to find a way to remove or at least alleviate their symptoms and to find ways to cope. Consequently, isn’t it time to voice our admiration for their incredible strength and determination? I think so!
I have heard time and time again of how the Invisible Disabilities Association is a voice for the invisible, the forgotten, the isolated and the lonely. One of the pillars of our mission is to be the voice of encouragement. It seems that there are two voices that IDA speaks with: one to the world, shouting, “These people are just like you, they happen to live with illness and pain. Believe them, become their friends and love them. They are no different.” The other voice is to the person living daily with illness and pain in gentleness and encouragement, “You are not alone, you are valuable and let us journey together on this road of life.”
Yet, there is really one voice trying to help both by advocating loving conversation, understanding dialogue and selfless care for each other. The two roads of illness and of caregiving can be difficult and encouragement is required to move forward.
I love Google’s definition of encouragement: “the action of giving someone support, confidence, or hope.” Hope is not always the hope of the chronic pain ending (we all wish it would) or the disability going away (and we would like this too), but hope is when someone believes and acknowledges the daily strength of another in spite of illness. Hope helps remove the loneliness and isolation. Hope via encouragement removes the blame and shame. Learn more about hope in my blog, “A Hope to Believe.”
I think of Invisible Disabilities Ambassador, Katie Maskey. Katie is a wife, advocate, volunteer, businesswoman, philanthropist, fashion stylist and state titleholder. In 2004, a few months before taking the walk down the wedding aisle, Katie fell ill and underwent a few lung surgeries. From that point on, she has lived with chronic pain. She is passionate about raising awareness to shed light on those living with an invisible disability. Katie has become a voice as well.
As the reigning Mrs. Ohio United States 2015, Katie is determined to use her title for the good of others through her platform “P.R.I.D.E: Positively Responding to an Invisible Disability Everyday.” Whether she’s volunteering, serving the young women at the all-girls private high school in which she works, or helping other women to rise above life’s challenges and overcome their own invisible disability, she is passionate about empowering others. Katie is looking forward to spreading the “Invisible No More” message to everyone she encounters as an IDA Ambassador!
Sometimes our voice gets a boost via media such as on the HuffPost Live show “You Don’t Look Handicapped to Me!” Or via National Public Radio on their show “People With ‘Invisible Disabilities’ Fight For Understanding,” produced by Naomi Gingold. Other times the encouraging voice comes from volunteer greeters on online communities such as theInvisible Disabilities Association Community on Inspire.
Mandy Harvey, the IDA 2015 But You LOOK Good – Inspiration Award Honoree uses her voice to encourage via incredible jazz singing and dynamic inspirational speaking while unable to hear it herself. Mandy lost her residual hearing in 2007 at age eighteen due to a neurological disorder. According to Mandy, “Hope is never lost; it is something you have to hold onto to stay strong. And it is something that we have a duty to show and give to others. It “keeps life moving” and pulls us out of any dark situation. Continue to hope and make your dreams a reality.”
If you want to use your voice for those living with illness and pain, then shout to the world that all people have value. Sing the praises of a friend who runs the daily marathon of pain from the bed to the couch to the table to the couch to the bed. They are worth encouraging to keep of the fight.
IDA will always be their voice and I personally will keep talking and sharing and listening and acknowledging and encouraging and shouting and telling the stories of triumph and of tragedy, of overcoming adversity and of overwhelming endurance. Let’s all envision a world where people living with illness, pain and disability will be Invisible No More! Let’s be their voice of encouragement together. Katie and Mandy are in – how about you?
Copyright 2015 Wayne Connell – This article was first published on Disability.Blog, by Disability.Gov on June 24, 2015.