I am constantly reminded about how incorrect this assumption about how two seemingly innocent letters, once put together, can spell out a complete change in someone's life for the rest of their lives. Using the acronym 'IC' although easier to pronounce and readily recognizable amongst the community it definitely does not give weight to the sheer magnitude and seriousness that living with a chronic pain disease really is. So for anyone who might be reading this article about IC for the very first time, I will try to spell out what IC means to someone who has never heard of it before in the hopes of continuing to spread the ripple of awareness out past the medical community and into mainstream vernacular, like a stone cast into a placid lake.
IC is the acronym for Interstitial Cystitis which loosely translates to a chronic and inflammatory condition within the muscle tissue of the bladder. That being said Interstitial Cystitis is no more a simple bladder disease than cancer is simply cancerous cells wrecking havoc in a cancer patient's body. IC is incredibly and utterly painful. Speaking from personal experience when my IC pain and symptoms were at their worst for many years on a scale of 1-10 my pain level was a 20. The pain is in and around the bladder and the bladder is often described as feeling 'heavy', painful and as if it contained pebbles inside. Chronic and extremely disruptive amount of time is spent urinating. When I say extreme I am talking about urinating or feeling the need to urinate every 10-15 minutes to the point that a lot of IC patients are unable to sleep at night. But that is just the pain and symptoms of the bladder.
Men with IC (for yes it is true that men can have IC too!) can experience pain within their testicles and have severe pain after ejaculation. For women the pain radiates from the bladder into the pelvic region causing pain in the vagina, labia and surrounding tissues and muscle groups, and the pain of IC often intensifies with the fluctuation of hormones throughout a woman's menstrual cycle. On top of all of this both men and women can experience excruciating pain during and after sexual intercourse to the point of avoiding sexual intercourse completely. This combined with the severe pain, misunderstanding and lack of awareness about IC can cause a tremendous disruption in normal day to day activities such as work, college and raising a family. Add to this a complete spiral into depression from the constant and unrelenting pain and the feeling of isolation and not feeling like a 'whole' person is very common.
Food, or should I say the removal of food, is another component of living with IC that creates more feelings of depression and isolation because the simple act of eating food can cause excruciating pain for the IC patient. This is due to the IC patient's layer of protection which lines the outer wall of the bladder being compromised so any time the IC patient eats foods that are spicy, acidic or found to cause an IC 'flare-up' (this list is too large to list here. It is easier to state the most IC patients are only able to eat a handful of foods. Period.) and so therefore their diets are extremely limited and restricted. Now if you have never had to have years pass by when you have only been able to eat a handful of foods day in day out, ignoring the ability to eat out, drink alcohol, or enjoy any type of holiday food or dessert, try to imagine one Christmas, or one Passover not eating any of the special foods that have been passed down for generations in your family. It really wouldn't seem like much of a holiday, would it? For an IC patient a holiday is simply a day to be endured. A day filled with pain, depression and eating the same food that was eaten last week, last month and last year.
So in this month of IC Awareness I would ask you to write to your Senators for more funding for IC, go to the IC Network or IC Association websites and read about IC and pass along the information. You never know that the person that you sit next to on your daily commute to work or the person serving your dinner at your favorite restaurant just might be living with IC. Awareness