My dear friend Bea from http://www.notsocheesykitchen.com and I talk about health on a regular basis. Not only because she has been an amazing supporter and friend in the past few months, but because life has thrown her her own set of health challenges- both of her beautiful daughters suffer from a condition called galactosemia. It’s a genetic disorder that affects the metabolizing of milk sugars. When unrecognized can be deadly, especially in infants. As a result, Bea has become a health advocate, avid blogger, and generally a go-getter and hell-raiser. What neither of us likes, is pity. People use the phrase “I am sorry” inflationary. Did you cause my Crohn’s? No. Worse, “I am sorry to hear that.”- You’d rather not know that I have Crohn’s and just judge me as unreliable when I cancel something last minute? Similarly, I am rather put off when all I hear from other Crohn’s patients is complaining. “I can’t do this, I can’t eat that, my life has changed.”
My harsh words and lack of empathy may stem from the fact that I didn’t undergo such a huge shift in my life as some did. I was four when I was diagnosed, and certain things were just not possible without major consequences. A little example: Back in the 1980’s one of the major dietary recommendations/rules were “no white sugar, no white bread.” As a result, my mother ended up starting to bake her own bread, often buying the grains from a miller, grinding it herself (that machine was the loudest device you can imagine). She did this BEFORE IT WAS COOL, HIPSTERS! It also meant, that when I was invited to a birthday, I had to bring my own cake, or was watching as the other kids ate their colorful, sugary crap. It meant no chocolate and it meant no soda/pop/lemonade (whatever you want to call it!), and a limited amount of ice-cream. So when someone who was diagnosed in their 30’s tells me about how hard it is to give up soda, I can only offer them a blank stare.
Despite most people’s horrified looks and comments, I can tell you that, no, I did not have a terrible childhood because I did not have these things. And contrary to people’s expectations, I did not ever feel deprived of life. Was I occasionally pissed that I have Crohn’s? Absolutely. Did I have long stretches of self-hatred and shitty body image, due to cortisone and other meds? Oh yes. But at no point in time did it occur to me that I couldn’t follow my dreams, or that I could not fully participate in society.
The reason for this, I believe can be found in my upbringing. At no point was I pitied, or if so, my parents, aunts and uncles and grandparents hid it well. It did not even occur to my mother (who was happy that I didn’t died before I was diagnosed) that not having ice-cream could destroy my childhood. I also had great role-models: My grandfather had Ankylosing Spondylitis. Until his death last year at the age of 82, this man got up every damn day, got dressed and did his work. He also had diabetes and a head injury in the 70’s that had required several surgeries. I rarely ever heard him complain. He had what he had and he dealt with it.
I don’t subscribe to the “suck it up and shut up” camp, even if the above may sound like it. On the contrary, I do want to get the word on Crohn’s and Colitis (and other conditions too!) out there. Advocacy will hopefully educate people, foster a better awareness and make things better (free access to clean public restrooms! I am talking to you, Germany!) for IBDers and non-IBDers alike.
Crohn’s sucks. It sucks quite a bit. No way around it. And there are plenty of days when I am howling and gnashing my teeth (both literally and figuratively). Felt terrible, ugly and unlovable? Been there. Too weak to make it from the toilet back to my bed? Yep. That has happened. But what has also happened was me graduating from high school even with long stretches of absent days, living in New Zealand with a marvelous host family, living in Minnesota and making great friends, moving to California to go to grad school (and getting that PhD!), finding love and getting married, – I could go on. Life is a present, and as such it should be treated.