As my body became sicker and sicker and all roads in a definitive diagnosis for my bladder/vaginal pain eventually lead to IC, the world around me became smaller and more obscure.  Seasons came and went with anonymity.  I forgot to vote in a Presidential election.  Hours were spent listlessly and sadly researching IC treatments on the Internet and trying out Western and holistic treatments. 

Many friends and acquaintances eventually stopped inviting me to functions that I was only going to turn down anyway.  But how much fun would someone be at a party that spends all her time in the restroom and who can't eat or drink anything because they are all bladder irritants?  I began to sense a loss of self: Who was I now that I had an incurable disease?  Would I ever get better?  How would IC affect my relationships in the future? 

I turned to IC chat groups (this was long before Twitter and Facebook) but found that most of the focus was on other women complaining about their IC symptoms, their doctors, and their treatments.  A spiraling loop of negativity and doubt about any possibility of improving.  I only stayed with the IC chat group for a couple of months before I decided that their influence was not a positive one, and that reading depressing stories about IC all day every day was not good for my ever-present  depression about having the disease myself.  Shortly after leaving the support group I began the IC elimination diet and after finding some relief from my symptoms, I began working with a TCM doctor specializing in the treatment of IC.  With each passing day I got a  little better (although I had many months of one step forward ten steps back along the way. And I will save another blog to talk about the pain and horrors of dealing with yeast die-off symptoms). 

As I took actions for my own health and well-being the more I realized that my focus became less about my IC symptoms and more about the world at large again.  Life can be painful and bitter at times, and we all experience that, but it is also filled with beauty like the gold turned peach sunset that I can see outside my windows. 

Living with IC can be incredibly isolating and lonely for anyone suffering from it.  For people with extreme cases of IC they are literally stuck at home (with a restroom close by) due to the excruciating bladder and vaginal pain and the constant need to urinate.  I have spoken with women who sometimes fall asleep on their bathroom floors as it is much easier than constantly getting up and down all night long and making the journey from warm bed to toilet. 

Besides the pain and discomforts associated with living with IC it can be lonely to have a disease that doesn't always receive the same limelight as other know well publicized women's diseases.  If you tell someone "I have a bladder disease" or "I have Interstitial Cystitis" they are either embarrassed due to the location of the disease within the body and quickly change the subject, or they suggest that I try drinking cranberry juice which is literally like putting kerosene on a fire.  Don't get me wrong.  It is nice when people show a genuine interest in learning about IC in order to educate themselves and other women about the disease, but sometimes when I hear the words: cranberry juice, I think that my face will be the only thing cranberry-colored as I count to ten and politely change the subject myself. 

The other bitter loneliness that arises from IC is how immediately and intensely life changes.  From strict dietary changes due to extreme food allergies and/or having to undergo intensive and oftentimes invasive procedures (usually performed at a urologist's office) can create a loneliness that most women have never experienced before.  Most people are able to swing out their social nets and meet for a drink at the bar or go over to a friend's house for dinner, but a woman with IC can no longer drink alcohol, and most foods are bladder irritants, so sometimes it is easier to just stay home instead of having to deal with the embarrassment of not being able to enjoy the same foods and alcoholic beverages with their friends and family. 

Know that if you are a woman with IC that you are not alone in your loneliness.  Reach out and look for an IC support system within your community or via an on line forum or chat group.  I would also recommend utilizing your pastor, spiritual counselor, or a clinical psychologist so that your loneliness does not turn quickly to a state of severe depression.  There is safety in numbers and knowing that you alone are not the only one suffering.