I’m fine, but not really. If you have a chronic illness, you know how that goes. So I live a dual existence. What I look like, and what I feel like. But we all know that looks can be deceiving, right? The duality is like an albatross, and I get tired of trying to explain and justify myself. But before I continue, where is your bathroom?
And there’s the truth of the situation, until I know that there is a bathroom, right there, where I can get to it when I need it, I can’t relax. I try, but I can’t. The weight of not knowing encroaches on me like an insidious virus, threatening to wreck havoc with whatever peace of mind I might have started with. The toilet rules my life. I try not to let it, but let’s face it, I have INTERSTITIAL CYSTITIS (IC).
From what I understand, I am one of the fortunate ones. Some statistics say 66% of those with IC don’t work. I do. I work full time at a job I love and am good at and that is fairly bathroom friendly. I am an Assistive Technology Specialist for a school district and, for the most part, I can arrange my schedule so I can easily get to a bathroom. I can go a couple of hours without one, but I need to watch what I drink. If you have a restroom related disorder you know what that is like. If you don’t, try to imagine having to constantly monitor your intake of liquid and often food, to make sure you won’t have to go to the bathroom until you can (I have the timing down fairly well for most days). Ever sip I take is a conscious thought on my days where I am with a lot of students or in a lot of meetings. Every sip. Something as simple as drinking water has to be present in my conscious mind. That takes a lot of mental space and it gets very tiring. But I AM one of the fortunate ones, I can work.
Traveling is another story. And I don’t just mean long distances. Going shopping for something where I haven’t been before gives me pause, too many hours ahead of time worrying, will they let me use their toilet? Sometimes I don’t even want to go at all. Sure, stores like Target and Kohls have bathrooms, but what about that furniture store? Or the oil change place? My mind becomes consumed with fear, possible embarrassment at having to ask, worry about pain if I am not allowed. Memories of being mocked for needing the bathroom when I look fine. OK, those instances have all been at varying airports, so maybe that oil change place is ok. And then there is flying. I live a distance from my parents and brother, and, well, Texas is really too hot to enjoy in the summer anyway. So I do fly. But that is perhaps one of the largest stressors in my life. Because I have been looked down on and condescended to when I have politely asked to use the bathroom, whether before boarding after a close call layover, on the plane waiting on the tarmac, or stuck on line checking in or the like. And yes, I finally did need to write a complaint letter to American Airlines over one incidence. The entire day I fly I am just curled up in a tight ball inside myself, trying to remember sooner or later, it has all been ok. Traveling by car can actually be worse, anything over an hour threatens to push me over the edge. Again with the monitoring the drink, the straining out the window looking for gas station signs just so “I know”. Because sometimes, especially in TX with its lack of forested side roads, there are long stretches of rural terrain with no towns in site, and no trees to hide behind. I must confess, sometimes I have had pain for short periods, but it has all been ok in the end. So why do I panic, why do I stress? Because more than anything, I fear the physical pain, the emotional pain, and the embarrassment. And I want to avoid the pain. But I also just want to live my life.
Coping, I don’t always do well with it. As I mentioned, first I need to find that bathroom. Luckily, my husband (or family, close friend) is often there to remind me I will find that toilet. I often need that external voice to help me remember I have gotten through this before. And then there is God. My faith has been essential on this journey, knowing He is looking out for me, and will help me step through this pain and this stress. Prayer goes a long way towards calming my mind. And then there is the hardest thing of all, opening my mouth, and asking a question that is, to me, an admittance of my failure. But really, only an admittance that I am, in fact, sick. And I do, in fact, have a bladder disease. And that question is this: “Can I please use your bathroom?” Or a call ahead of time: “Is there a bathroom there if I need it?” I rarely have to even explain I have a disease, but if I do, it is only the truth, and I am only asking because I really need to know. So if you don’t mind me asking: “Where is your bathroom?”