I was posed this simple yet thought provoking question from my husband the other day. “What do you think is worse- having an invisible illness or visible?”Â
The question took my aback. I didn’t know the dividing line between invisible and visible was so tenuous it would snap, leaving me to know both worlds more intimately than I would ever like.Â
So I pondered to myself quietly, thinking not only of my own health but of the many others who have faced struggles seen and unseen by the eye.
With an invisible illness, you look entirely normal. You can explain forty different times that you have an illness. You can spell out to people verbatim what your doctors have said about your illness; you can even describe to them in detail what you feel. Maybe only to hear later after these numerous details have been divulged countless times with, “Wait, you’re sick?!”Â
Then after said comments arise noting the incredulity of your illness, you know that no words can ever be strung together with the clarity needed to convey what you’re going through. Â So you either continue on the subject only when necessary or you hang the words.Â
When you have an invisible illness, you simply cannot hide your illness- even when you want to. Even if you go through all the procedures in the past to feign health, people will still see your illness. I’ve seen people intentionally avert their gaze, not knowing what to say as my head plops to the side and a steady stream of drool escapes. I’ve seen others gawk, still at least one other with a panicked voice, asking if he should call the ambulance.
I’ve seen doctors frantic as my eyes roll back in my head, one “firing me” as a patient and still others that lacked the usual detached professional decorum most hate.
I was speaking to someone outside while in my wheelchair many months ago about others who had similar health complaints as myself, yet who were able to walk.
“Oh, wow, that must really encourage you then!” My friend’s voice picked up a couple octaves higher as she envisioned the lives of the people I spoke of and what this could mean for me.
“Well…” I hesitated. How could I string together those sentences to help convey that the seemingly fully functional were not, in fact, functional?
“No,” I finally answered her. They endure their own type of misery. Each person facing chronic illness has their own struggles to endure which are incomparable to another.”
I was still mulling over the two worlds, so vastly different but threaded on the same vein when my husband prodded me for a response. “Sarah, do you have an answer to my question?”
“No, I really don’t have a definitive answer on this one. My safely disguised answer as indecision clung to the air, pregnant with meaning- and he understood in the silence what many could never know. They both carry their own pain.
This is such a fantastic topic and one I have thought a great deal about as I spent several years “invisible” and then quickly transitioned to “visible”, theres obviously deeply painful aspects to both. Thank you for writing this.
http://www.shipwithnosails.com
Thanks for your thoughtful response, Genevieve. Glad to know there is someone else out there who knows what it’s like to transition from the invisible to the visible, but I am truly sorry for the pain that you’ve had to endure yourself. Let’s face it, none of it is fun! ——–>>> Going to your blog to check it out. 🙂 🙂