My name is Jennifer Ward.  I’m a married 27 year old who has been living with IC for about 13 years.  I don’t have children but I have a wonderful English Bulldog named Beau Jocque (who stays up all night keeping me company during flares!)

Recently I witnessed something quite profound on the Daytime TV circuit. It was a time when I was feeling despondent and grieving over the changes that have happened in my life since IC has become an ever present companion to me. Montel Williams spoke about his own chronic illness, (Multiple Sclerosis) and he said something that I found inspiring. Montel said that he lives in pain everyday, but there came a time when he had to decide if he was going to ”live” with having a chronic illness or was he going to “die” with a chronic illness. The difference being that he chose to go on with his life, to persevere, and to fight.

I found myself wondering which way I was going to go… Would I choose to live and fight this battle or was I going to let IC win? I chose to fight. Below is my story, my uphill battle and my honest feelings about what having IC has changed within me and my family and what it has taught me.

At 14 years old, I found myself in an unfamiliar place, in the Emergency room with a massive kidney infection that almost killed me. Little did I know at the time that this would mark my beginning of a battle, one that I will call the “blame game.” Years and years went by with more Emergency room visits and tests and going from doctor to doctor desperately seeking a name for this “infliction “ that I had. I just called it my “bladder problem.“ My story is no different than any of ours. I went from doctor to doctor seeking treatment where they “blamed“ various reasons for my bladder problem/pain. I heard the diagnosis for the first time when I was 21 and had a cystoscopy and bladder dilation. The doctor told me that I had the markings of a bladder disease but that he could not help me. I had nowhere to turn so I kept searching for someone to help me figure out a plan of action of how to management the disease.

I found out that I had several birth defects which came with an entire new set of complications. In October 2003 everything changed. It was like someone turned on a light switch and my IC went out of control. Instead of just dealing with monthly flares I suddenly had this unwelcome guest every minute of everyday (IC) and then I realized that I really should have gotten the apartment with two bathrooms instead of one! I wanted so badly to get my life back I thought that if I just ignored it maybe it would go away. Maybe I would wake up from this nightmare and it would be gone, maybe I could realize some of the dreams I had for myself, my career, my marriage, and our dream to have children and live a normal life.

It made me wonder if God had something against me, if he was trying to teach me something, or punish me for some reason. I found myself on this quest to figure out why I got this disease and to make some sense of it. I had to go on medical leave from my job designing computer systems for hospitals which was one of the hardest things I ever had to do. Eventually, I had to accept that I would not be able to go back to work, at least until my IC was under control. I could not travel anymore which meant I missed Thanksgiving and Christmas with my family in New Orleans which made me feel isolated and alone.

I have asthma, allergies, high blood pressure, polycystic ovary syndrome, hypothyroidism and I have an duplicated renal artery and ureter which means that my urinary system is extremely complicated. All of these conditions and “unique” anatomy combined with IC culminated into me feeling really desperate about my situation. It all culminated one night when I was crawling to the bathroom on the floor in the middle of the night in horrible pain, trying really hard not to wake my husband because I did not want to “bother him.” I wondered how anyone could withstand this type of pain and not die. I kept telling myself that tomorrow was another day and that I just had to hold out a little longer and the spasms would stop. My husband Jeremy woke up and sat on the floor with me all night. I felt so debilitated but I did not realize how helpless my husband felt. Jeremy told me that it was his job to be there for me for better and worse, in sickness and in health, and that he was not going anywhere so I might as well get used to it!

In my suffering, I failed to realize the disastrous effects my illness had on my husband and my family and friends. By trying to pretend that everything was okay I shut out everyone including my husband. I have since learned to explain to my friends the real truth of living with IC. Jeremy told me that he felt helpless because he could not stop the pain, he could not prevent me from suffering, but that he was there for me, for the long haul, and that we would fight the battle together.

At the time I felt like admitting that I needed help was like I was surrendering to the disease. I found out about an IC Support Group in my area and immediately got involved with Interstitial Cystitis United of Texas.  We have several support groups in the Houston area and I figured that helping others was my way of fighting back. 

I too had a choice to make..Was I going to continue to fight this battle alone or was I going to accept that I have a chronic disease and was I going to “live” with IC or “die” with IC? My quality of life is up to me and me alone. I cannot change the fact that I have IC but I can control how I FEEL about living with a chronic illness.

Up to that point, I felt like IC had taken my life away from me, my job, and it took my spirit too. But then I realized that living with IC does not mean your life is over. It means you need to ADAPT things to help yourself. For example, I lay down instead of sitting when I talk to people for long periods of time (or when I have to ride in the car,) I go to physical therapy and  I admit when I cannot attend an event or function, I take my medications, and most importantly I ask when I NEED HELP! (Especially in the middle of the night during flares!)

I finally found a urologist that could help me get on the right track. He promised to be there for me through thick and thin but did not lie about my prognosis. I admired his honesty and his empathy for people living with IC. But then I realized something…It made me mad to think that maybe my life would have turned out different if I had been diagnosed sooner. It made me want to change the system. It made me decide to fight. I have learned accept a number of changes in my life but one thing stays the same….

IC does not define me, I define my own self worth, and I am responsible for my own happiness.

Jennifer