Allowing your invisible illness to show is akin to “standing naked in a crowded room of well-dressed people.” I saw this statement on the blog site, Sick Momma and all I could picture was the story of the Emperor’s New Clothes.
In case you have forgotten it:
Once upon a time there was this Emperor that was so full of himself that he was easily trick by gangsters posing tailors. They said they’d make him some duds that only non fools could see. So when they bought the Emperor the suit and he couldn’t see it, he thought OMG, am I a fool or what. And not wanting to appear a fool, he pretended to put the invisible suit on, when in truth there was nothing there. So the old fool, the emperor, went out in public in his invisible clothes. No one wanted to tell the Emperor that he was naked except for a punk kid. But the Emperor continued to pretend he was still dressed because he didn’t want to appear the fool that he was.
The Emperor was “naked” in crowd of dressed people. That is how the people with an invisible chronic illness feel–naked. Those with invisible chronic illnesses feel vulnerable, living in a world of healthy and whole people.
Those with invisible chronic illnesses walk around with their mask on. They only let there mask slip a bit to let there nearest and dearest friends and family know about their illness. But they shouldn’t have to live this way. Having medical issues doesn’t mean the person was cursed by God, a sign of moral failings, a sign of weakness, or they in some way deserved to become ill. It just simply means they are ill.
Invisible chronic illnesses are easy to hide. You can hide them from others and you can deny them to yourself at times (especially if others don’t know you are ill).
I consider myself one of the lucky people with an invisible illnesses. . .
One of my illnesses is Post Traumatic Stress Disorder. During and educational seminar that I was helping to run, I had a flashback. Suddenly, about 50 people that I worked with became very aware that I had PTSD. My invisible illness was “outed” so to speak; my invisible illness was visible.
Being “outed” is probably the best thing that ever happened to me. Hiding an illnesses if a horrible way to live. It is living the life of a lie, it is not living in the reality of the truth. I think everyone with invisible chronic illnesses deserves the best in life they can get, and the best includes the truth. Now, I get to celebrate openly, the fact that I survived what was once an unspeakable time in my life. I get to celebrate that I am alive, living with chronic illness, but alive.
Now I am very upfront about my invisible chronic illnesses when appropriate. If people honestly want to learn about the illnesses I have, I am more than happy to teach them (I am a disable RN). I know that the best way to get rid of stigmas is to speak out about them; it is important to educate those around us. As for me, I like to share the hope and freedom I have gained by speaking out.
Suzy Raffensperger is married and has 3 adult children. She is the author of Mimi’s Tale: A Story of Transformation. She had a migraine variant that left her residual neurological deficits. The deficits affect her short term and working memory, and left her unable to continue working as an RN. Besides Chronic Migraines, Although Suzy has many chronic invisible illnesses, she finds her Mixed Connective Tissue Disease, Fibromyaglia, Asthma. Post Traumatic Stress Disorder, and Diabetes the ones that most interfere with her daily life.
Being unable to continue to function in a typical setting for a nurse, Suzy has taken to blogging as a way of chronicling her journey towards better health and passing on articles that she thinks may help others on similar situations. Her blog can be found at artfulabilities.blogspot.com