Most women living with IC also suffer from other chronic illnesses such as endometriosis, adenomyosis, autoimmune conditions, thyroid dysfunction, etc. (I myself am dealing with all of these conditions). Just one of those illnesses is enough to bring a person to their knees. Add in all of them together and you have a recipe for immense suffering and struggle to get through each day.
We're not looking for sympathy. We're not trying to complain or be whiny. We just want understanding and compassion and to create awareness. We want to speak out so that others who are just starting on this difficult journey have somewhere to turn to for help.
You have no idea how much being understood makes a difference when you are dealing with chronic illness. I received a sweet message on FB from one of my friends not long ago who had a temporary injury and she wrote to tell me how hard it was to go about enjoying a weekend out with her family while in pain. She said you would never know by her photos how much she was suffering and it made her realize what I live with each day.
When someone "gets it" like that, rather than judging you, looking down on you, or thinking you're overexaggerating or being lazy...there are no words for how much it means.
This past weekend, my husband and I traveled to NYC to see our favorite band Blue October perform. Matt had called ahead about ADA seating and we were told to get to the door 30 minutes early and to tell the doorman that we needed an ADA seat.
When we arrived and approached the doorman, he looked me up and down, then gave me the, "But you don't look sick" stare. My fellow chronic illness sufferers know exactly which stare I'm talking about. He began to question me in front of the large crowd of people standing in line and my husband had to start listing off my illnesses in front of everyone to get him to finally believe us (somewhat). It was humiliating to say the least.
As we were led to the upstairs balcony, the doorman made it known that he was still suspicious of me by taking me all the way to the back of the upper floor and placing a chair down, saying, "Here. I'll have you sit back here." Kind of like, "If you think you're getting special treatment with this seat, think again. You're paying the price for it by getting a crappy view."
His suspicious glares continued throughout the night, along with questions from other guests as to why I had a chair and they didn't (along with stories like, "Oh well I just had back surgery," and "I have been walking with a cane the past week," as if my chair were undeserved).
So while a cure is of the utmost importance, awareness, understanding and compassion are just as vital. You don't know if that person you're judging is grasping that last straw of desperation and your snide look may be what finally puts them over the edge. Remember that what you see on the outside is not always indicative of what is going on on the inside (and be happy about that because if the pain and suffering that accompany these illnesses could manifest in outward appearances...well, it's not something you would ever want to have to look at).
The old adage is true when it comes to invisible illness. Don't judge a book by its cover. Don't judge a chronically ill person by their physical appearance. Your kindness and compassion could mean the difference between life or death for those who are teetering on the edge of giving up their fight.
Note: Many thanks to fellow IC sufferer Cher Tushiah for starting this conversation on Facebook and helping to create awareness!