When I stumbled upon the unknown and unpronounceable disease known as Interstitial Cystitis on the Internet, my heart and my bladder clanged in matching sombre notes: This is it. But my head did not want to believe a diagnosis of IC with its haunting and horrific definitions which begin with the word: incurable. Please let it be anything but IC! My mind cried. When the doctor finally stated the words Interstitial Cystitis to me, the words circled and circled and circled the room until they found a place in my saddened heart.
I thought these words prior to, during the diagnosis, and after diagnosis of IC aloud to a few close family and friends: Why does it have to be incurable IC? I wish that it was cancer! I have to live the rest of my life with this excruciating pain? I want to die!
So please understand me, dear readers, when I say how difficult it sometimes is to hear and see all of the very widespread awareness/coverage/funding for cancer, while IC still gets minimal press. I somehow doubt that it was by accident that the IC supportors, associations and patients made the month of October the official month for IC awareness, sharing the month and very much overshadowed by breast cancer awareness.
It makes me wonder: Do people have the same circling and dizzying feeling when the doctor confirms their suspicions and announces they have incurable cancer? Do their lives pass before their eyes? I try to understand what this moment must be like and I try to be supportive, sympathetic and empathetic to this sad and devastating diagnosis. Yet, until that moment happens I cannot imagine it correctly.
But (and bear with me please) I do sometimes wish for the same wave of empathy to cross someone's face when I explain that I have been living with a chronic and painful illness for five years when I tell people I have IC. For there to be an instant of recognition, not only of the disease but of what living with the illness is like and how it affects my daily life including my food choices, relationships, etc. I would love to see large corporations and heavy-hitting celebrities throw their status and their charitable tax-free donations towards finding a cure or better treatment protocols for IC (and Fibromyalgia, MS, Lupus and all of the other painful chronic conditions that millions suffer from) with the same conviction that they give towards funding cancer research. I wish when I wear a blue ribbon or post one on Facebook that other people ask how they can support me as well as others struggling daily with IC.
Living with IC can feel like your life is rushing away in front of your eyes and you become two people: me before IC and me with IC. With a diagnosis of cancer there are two outcomes: overcoming cancer or passing away. With an incurable and painful disease your outcome is: to live your life (and who knows how long that will be) with the pain and symptoms and often with the chance that the pain will increase with age. Thoughts of suicide frequent many of us with IC (I had them. I am not ashamed to admit this). Life with a chronic disease colors everything around you. Death seems like a good option sometimes.
If you've stuck with me this far let me reiterate that I have lost family members and, very recently, a dear friend to cancer. Sadly, my friend understood what it is like to receive a diagnosis of two painful chronic diseases (one of which was IC) and then after living in excruciating pain for over three years she developed and then later succumbed to complications from breast cancer. Our friendship will always be sacred to me and if she were alive I know her opinion of which diagnosis was the scariest for her to endure. Along that same vein, I have a close family member that is living each day with a diagnosis of terminal cancer hanging over her head. When we spoke recently I had a clarity about the whole terminal illness/chronic illness dilemma: we each think we want the opposite diagnosis, but we are incapable of changing what the fates have handed to us. So we try to learn the lesson, hug our loved ones and await the final chapter of our lives.
For those of us with a longer waiting period (and with chronic pain) I say: Stand up and let your voices be heard about what it is really like living with IC. The more aware people become about IC the more funding, research and, perhaps, empathy, will be raised. It is a Pandora's Box filled with equal parts sadness and enlightenment if we ponder the which is better/worse incurable disease/cancer scenario. So I will close the door and turn the key on this post by saying that we are all courageous fighters.