I do my best to keep this blog on the theme of food but every now and then I need to go off topic and talk about the other biggest thing in my life…Crohn’s Disease.
To refresh some of my newer followers, I have had Crohn’s Disease for over 40 years. My life has been like a country road…it has curves, bumps and detours. It can be a road that at times seems unnavigable or under construction. Sometimes things come out of nowhere and it may scare me….but I keep moving forward.
In my life, I have chosen to see the beauty of a country road. I see the trees or the formation of different items in a cloud. I take joy in each stalk of corn and how they change over the seasons. My country road is a slower path than most but it is the road I have been put on and I won’t stop until I reach my destination.
One of the things I deal with on a regular basis is the anxiety that goes with going to a large public place where bathroom access may be questionable. I go thru a regime of wondering if there will be an accessible bathroom and how long the lines will be. (And if you are wondering….I have pulled over on my country roads more time than I’ll ever want to admit!)
I have to calculate when I eat, what I eat and how long it will take before I have to go to the bathroom again. I have to worry about the pain I experience WHEN I eat and if it will last for minutes or hours. I also think about the people I am with and if my frequent bathroom visits are going to impair their fun.
If the event is a long event, I may choose not to eat. This is hard for so many reasons. Besides the fact that being hungry is no fun, not eating doesn’t mean I won’t have a stomach ache. Also, not eating tends to make me a little cranky. (I’m not in denial.) I can’t think straight because my blood sugar will get so low that I get dizzy and incredibly shaky.
Not eating does not mean I won’t go to the bathroom a zillion times. It is just the maddening unpredictability of Crohn’s disease.
So today, I was at an event where they have a “special” bathroom for people who may have bathroom challenges… it could be they are older and need assistance or maybe someone in a wheelchair that may need a larger area. It is also a bathroom that is SUPPOSED to be available for people with inflammatory bowel diseases. I know this from previous experiences here and having talked to the management in the past.
It usually has a short line of 2-3 people compared to a line of 40-50 at the “regular” bathroom. It is one of those things that can almost come off as a luxury to someone with Crohn’s disease.
You see, this bathroom privilege allows me to go to something that I would normally never be able to attend. It gives me a few seconds of feeling normal because I’m not standing in a never-ending line dancing like a five-year-old who drank one too many juice boxes.
I had used this particular bathroom today before my event started and asked the attendant if she needed my little card that explained that I have a disability that she could not see. (And yes, there is a card for that!)
This woman was young and so kind. She didn’t look at me with her eyes….she saw me with her heart and there was no other explanation necessary. It was so sweet that it actually helped me go into my event relaxed.
Unfortunately, that feeling didn’t last the entire day because I had to go again. The young gal was not there anymore and instead it was a different woman who proceeded to SCREAM at me at the top of her lungs in front of a few dozen people.
I was half angered and half humiliated. People were looking at me like I was a monster and I didn’t know what to do but plead “I have Crohn’s and I’ve had it for 40 years….can’t I please go to the bathroom.”
If this woman would have spoken to me with kindness, I would not have found this dialogue so hurtful. It was the judgement in her voice and the anger in her eyes. It was contagious and it spread through a group of people within a matter of seconds.
In all fairness, she did apologize. I used the restroom but I didn’t feel better. I felt embarrassed, chastised and ashamed over a disease that I have no control over. I’ll confess that I cried for a second in that bathroom. I left that space to the whispers of women around me with their heads cocked in a way that I couldn’t tell if they felt sorry for me or if they were mad at me…I wish one of them would have asked if I was okay….but no one did….it was awkward…and I hurried with my head down as I cut through what remained of the initial crowd.
I kept saying to myself “Please don’t let anyone know I cried…don’t look up…I am strong…and I’ve fought bigger battles than this.”
I relayed the story to my husband….the guy who drives with me back on my country road. He kissed my hand and we both kind of sighed it off. It isn’t the first time I’ve had this experience, it sadly won’t be the last.
Why do I have to beg to use the washroom after all I’ve been through? The bigger question is why does anyone with an inflammatory bowel disease have to tell the masses that they might have an accident? Why can’t we all look at each other with compassion and understanding?
IBD patients look “normal.” We don’t have any real outward signals that we are ill or need help. We rely on people understanding that when we say we have to go to the bathroom, they realize that sometimes folks just have to go. We don’t abuse this privilege…we actually hate it. I would take your average bathroom life over my daily personal battle any day of the week!
You see, this was like a tree that falls on a country road. I could look at the experience of how this tree tried to take us out but instead I will feel bad for that tree. I’ll keep going down the road no matter what is in my path. I may notice a barrier but I’ll keep rejoicing in the landscape that makes up my journey.
