Shortly after becoming ill, the few people in my life quickly disappeared. Friends stopped emailing and texting. Invites stopped coming in. Messages were ignored. I had become invisible. I had ceased to exist. My illness had taken over. Lyme was my new best friend and no one else could bare spending time with “her”. It occupied all my time. It made me cancel appointments and plans. It left me cranky and depressed. It isolated and made me lose hope. The cunning power an invisible illness is that it can make you just the same- unseen, utterly invisible. As if dealing with the physical toll of Lyme weren’t enough, quickly the psychological yarn of my life started to unravel.
Being invisible isn’t only about others not seeing you. You can no longer see yourself, not anyone you remember, anyhow. Looking in the mirror, my face wasn’t the one I remembered. Dark circles predominated. My eyes lost their sparkle. I never smiled. My skin was dry and flat. Now unemployed, I could not afford make-up, skin care, or much of a hair cut. All my money went to figuring out what was making me sick ( I still didn’t know it was Lyme in the beginning). And so, without much self-care and the disease taking a visible toll too, I quickly started to change.
The positive thinkers out there might have said, “You were a butterfly, shedding your cocoon. “. And maybe I was. But it still hurt like hell. My identity became that of a perpetual patient. Seeing doctors more than family, but never being heard or taken seriously, I was no longer me. I was patient X. Hypochondriac. A name in a waiting queue. A list of symptoms and test results. Of course, deep down I was still there, I had just faded away. My self and my view of the world like a TV set that had switched from full color to black and white. Hues of grey were shadows of a lost self and a lost life.
I don’t know how you deal with chronic, debilitating illness and not lose a sense of your self, or remain visible to the world. I would guess that most people dealing with chronic Lyme feel the same at some point. Maybe, its the negative-thinkers who tend to live this way, while the positive-minded Lyme patients have some magical way of dealing. I don’t know. But just maybe, I think that it is more about how everyone feels about illness that makes people like me turn invisible. Maybe we are all so scared of losing control of our health and our lives, that we close our eyes to anyone who might remind us of that inherently human vulnerability.