I left the clinic that day feeling strange. I was definitely doubtful and a bit in denial. I was well aware of the pain and discomfort I was feeling physically but it was as if the realization that I might be in this type of pain for the rest of my life was just too far-fetched to grasp and impossible to accept. I was not really sure which steps to take next. I began ‘google-ing’ my symptoms as if to try and find something that might convince me that I truly did not have this awful disease. I started reading and researching site after site, link after link, possibility after possibility. I must have read through 50 sites that night alone, searching for the “answer” to my predicament.
One site led to the next and I began discovering all about other possible issues that could cause similar symptoms such as digestive imbalances and internal fungal infections. I continued on all organic food as I cut out all products containing synthetics. I became paranoid and began eating a stringent diet of mostly raw vegetables and nuts. I delved into crazy supplements, seconded by extreme fasts and detox cleanses. I amplified my search, trying and buying anything and everything that promised some form of relief. I wasted a lot of money, shocked my weak body with ceaseless changes and became obsessed with finding a solution.
I managed to convince myself that I would be fully cured in a matter of a few short months, and so I continued my plans for full time school, even though the pain was becoming incapacitating. In public I began feeling embarrassed; there was no way to hide from my classmates that there was something very wrong with me as I was escaping the classroom every twenty minutes to use the bathroom (after holding it in agony for fifteen minutes prior). I spent class breaks crying in the washroom, on the phone with my mother, and missed numerous classes through shear inability to leave my bathroom in the morning. Several of my classmates remarked on how well I ate and how healthy I must be, as all the while I suffered silently right before their eyes. I felt utterly alone.
It’s important to note that at the time I was also working part time to be able to afford my schooling. The stress of school and work, and the exhaustion of “trying to do it all” when my body was obviously in such a fragile state took its toll. My IC intensified; various unrelated symptoms raged in addition to my urinary agony. I experienced deficiencies – likely due to my restrictive diet-, terrible heart palpitations, nervous system symptoms such as uncontrollable shaking, liver pain, ringing in my ears, dizzy spells and panic attacks. My courage seriously began to falter, I spiraled into a complete breakdown, depressed and discouraged. It seemed as though all of my reading and efforts had only made things worse. My over-consumption of nuts for energy had turned into severe allergies. I remember withdrawing from everyone around me. Most of my friends had basically stopped calling me after hearing that I was ill and that I would not be joining them for drinks at bars or eating in restaurants. My family members lived abroad. My boyfriend was having a hard time coping with my depression and was also frustrated that I was unable to do any of the things we had always done together. His coping mechanism became to escape me and spend most of his time out of the house. I did not have the energy to do basic activities or the urinary stamina to leave the house for even 15 minutes to run errands. I became a prisoner of my bathroom. I spent hours and hours a day alone in there crying, sitting in a warm bath trying to ease the pain. I could not get through a half hour of sleep without waking to dart back to the bathroom.
I neglected my appearance, I did not have the energy to keep doing yoga and had no desire to wear anything but my house robe. The intimacy in my relationship suffered as I was physically in too much pain to have sex regularly. Out of fear and remorse, I forced myself in an attempt to upkeep my faltering relationship. I felt so guilty for not being able to be the same friend and girlfriend I had once been. I felt like I was losing myself completely to this disease and scrambled to keep any semblance of who I had been and the life I used to lead alive. I tried to explain to the people in my life that I was seriously ill, but no one seemed to believe me or understand, and I felt as though everyone blamed me, and my poor past choices, for my current situation. I became filled with panic, blaming myself as well. My myriad of symptoms increased and this led to many desperate mid-night emergency hospital visits, always yielding no hope and little explanation. My boyfriend began believing that perhaps there was truly nothing wrong with me, and that I should simply ‘learn to live with it’.
A doctor I was referred to literally laughed in my face after I expressed my worry and physical symptoms, mockingly asking me if I had had a fight with my boyfriend. He claimed that women often experienced urinary symptoms in response to emotional upheaval. I was promptly diagnosed with a panic disorder, and sent on my way with a prescription of anti-depressants, and refused any further testing or analysis. I was crushed; I left there heartbroken. My treatment by the medical establishment led me to pursue alternative therapies and remedies offered by Holistic Nutritionists and Naturopaths. Yet after various sessions and new treatment approaches, no one seemed to know what was wrong with me or how to go about helping me. I had to quit my job. Mitigating school was hard enough, and I just did not have the extra energy. I used all of my remaining money on supplements and treatments. Fortunately I had the financial support of my boyfriend who shouldered all the living and medical expenses. In so many ways I owe my recovery to his benevolence. I lived at the school library, conducting online reading for over eight hours a day, months on end. I felt as though I knew more about my condition and health than any of the Doctors or Naturopaths I was consulting. I truly started to feel like I was going crazy and began threatening myself with potential suicide if by my 26th birthday I was still suffering in this way.