I have tried for weeks to write an article about invisible illness, about my invisible fight. You see, this week, September 27 to October 3, is “Invisible Illness Awareness Week,” and I want to contribute in some meaningful way; yet, I continue to struggle with the concept. Oh, I know the definition of “invisible illness” – a condition that significantly impacts the diagnosed individual but that is not obvious to others – but this is an incomplete and somewhat inaccurate description. My invisible illness, gastroparesis, is indeed indiscernible to some… but not to all.
First and foremost, it is readily apparent to me. I wake up every morning facing a day of pain and fatigue. Because my stomach is paralyzed, I cannot eat. To do so causes me immense pain. So, my days are spent trying to avoid food while still somehow managing to meet my nutritional needs. I am malnourished and exhausted much of the time. I look in the mirror, and I am met by a skeleton. I do not recognize the person who stares blankly back at me, this stranger who lacks my (former) vibrancy. I have a clear view of my illness, every single moment of every single day.
My illness is evident to most of my family and friends as well. They see my shrinking frame, and they are well aware of my new limitations. They are not blind to or untouched by my illness. They notice that on the few occasions I am out, I cannot participate in meals, and I lack the energy to join in many of the festivities. It is often plain to them that I am fighting pain and nausea. Many times, they can detect that my smile is not quite real, that my eyes aren’t shining quite as brightly as before. This is especially true for my immediate family. My husband and young daughter do not think my illness (or at least the effects of it) to be invisible when they are forced to take on extra household tasks and run errands that I can no longer complete. They “see” my absence quite clearly during my daughter’s events and performances, the times when my husband must act as both father and mother to my daughter.
No, my illness is not “invisible” to me or to those close to me.
Why, then, is it invisible to the others? Why do many doctors look past my condition as if it weren’t staring them in the face? How can the general public pass by me on the street without so much as a second glance? Why do the insurance and pharmaceutical companies, the policy-makers, and the media find it so easy to look past me and deny my existence? Why is my plight and the plight of so many others like me dismissed so easily? Where is the empathy, the compassion, and the willingness to help the invisible ones? When I ask myself these questions, I come to believe that perhaps my illness is invisible after all – and this deeply saddens me.
But I am not without hope. These people – the “others” – might not be willing to open their eyes to me, to my illness, but perhaps they will open their ears and hear me. If I am loud enough, persistent enough, and I refuse to go unnoticed, maybe I can one day make myself and my fellow strugglers known to them. Yes, this is my “Invisible Fight” – to make the unseeable, seeable.
Here is my plea:
