Thursday, September 8, 2011

An IC Moment

Recently I had an experience that typically signified what it is like to be an IC patient in my world. In an effort to try to elimiate some of the pain associated with my IC, I had agreed to a series of treatments that involved instilling medication directly into my bladder. I wrote about it here and here.

After the second treatment, I developed a lot of pain, more than the usual amount associated with the instillation. It was brutal. I had constant burning, and was urinating every 20 minutes with no relief, and every hour at night. Life became a blur of pain, burning, meds and drinking copious amounts of water in an effort to sooth the fire.

I assumed that I was suffering a reaction to the treatment, but had a difficult time contacting my doctor. After two weeks of trying to cope with it, I finally went in to my local medical centre to see a resident. Knowing that I would most likely be required to produce a urine sample, I drank several glasses of water before I went in to the appointment.

Halfway through my appointment with the doctor, a lovely, compassionate young woman named Dr. Nikkel, I had to go to the bathroom. Badly. By the end of the appointment, I was desperate. Knowing that I needed to hold it in at least until I got to the lab to do the urine test, I still really badly wanted to throw the whole thing to the wind and hit the can on the way out of the medical centre. At this point I was no longer able to stand upright, because of the pain.

Leaving the medical centre with Grace, who had graciously agreed to come with me, I debated driving the short distance from the medical centre door to the front door of the hospital. Unfortunately, that would have involved sitting down in the car, which I knew I would not be able to do, so I walked. Actually, shuffled would be a better word. Bent over. Wincing.

Once we got inside, we went to the front desk where the receptionist was going over a stack of files with one of the lab technicians. I limped into her office, where she looked up at me doubled over her desk and told me to take a number. Sigh. There was one other person in the waiting room, an older man sitting across from the office. I took a number and waited near her door, unable to sit down. I leaned, hunched over, against the wall. I was obviously in a lot of pain. I watched the secretary as she worked with the techician and silently willed her to move faster.

After what felt like an eternity but was probably no more that a minute or two, she finished what she was doing and called me into her office. I handed her my form and explained to her that I was there for a urine test, and was in a lot of pain. She handed me a cup and I shuffled off to the washroom.

Once the urine sample was collected, I felt 100% better. One good thing about being in such extreme pain is the almost giddy sense of relief that comes when the pain is lessened or gone. I came out of the bathroom walking upright and smiling. I dropped off the sample at the lab window and marched out into the sunshine, awash with relief.

It was only later, when Grace mentioned it, that I thought about the man sitting in the waiting room. Grace thought it was funny, that I had been in so much pain when I went into the bathroom and came out looking ready to take on the world. It occurred to me, though, to wonder if perhaps he thought I was faking the pain, maybe to get in to do my test sooner.

One of the consequences of having an invisible chronic illness is the tendency to expect people to think that I am faking. After all, it happens. Whether it is said to my face, or communicated in more covert ways, it always unnerves me. I know that I sometimes don't look sick. When I am in pain, I often just look tired or cranky.

It is entirely possible that the gentleman in the waiting room thought that I was faking. After all, who goes into a bathroom in agony and leaves looking perfectly healthy? Still, I have to allow for the possiblity that it's not even an issue. There's nothing I can do about it, either way. Except to accept the experience as a reminder to be open-minded and open-hearted when it comes to others. I am just as likely to have pre-conceived notions about others as others are to have pre-conceived notions about me. It's a lesson I need as much as anyone.

I mentioned this in my previous post about September being IC awareness month, but it bears repeating. The real challenge in our world is to allow ourselves to be others-aware.

Still, it's a challenge worth taking on, for all of us.

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