The Assumptions People Make About My Illness Because I Focus on the Positives

My family brought me up on values that taught me to always find the silver inning. So naturally, when I tell people about my condition I choose not to focus on the 28 surgeries or the catheters I have to carry around in my bag. I pull the silver lining out of the situation and make jokes about my illness or make jokes about how I pee standing up or how during any long road trip I never have to stop to pee anymore because I’m connected to a bag. This creates two big assumptions:

1. They think it’s easy to live with a Mitrofanoff or an augmented bladder. They wish they could pee out of a tube for convenience.

Yes, using a catheter has its conveniences, and yes it has worked to better my life. But don’t think for a second that I would choose this form of urination over the way most of the human population does it. Don’t think that I enjoy sticking a tube in my belly button four times a day to pee. Don’t think that all my hospital stays are full of fun and games because I never look sick around you. I know how to handle my situation and illness and just because I do, don’t think that it doesn’t suck.

2. “Your life is so good, don’t be depressed! You have survived this far!”

I roll my eyes at almost every comment like this. I have come this far and I’m thankful for it, but I’m going to need some anti-depressants and anti-anxiety medications to help me along the way. I’ve missed out on a lot of life and family events because of my illness — a family wedding, my 16th birthday, my first semester as a sophomore in high school. And with every surgery or long hospital stay comes an anniversary that makes its way around every year. These anniversaries come with tears, panic attacks, and sleepless nights. I’m happy I’m still on Earth, but I struggle with the challenges I face to stay here.

I think it’s important to remember that there is purpose behind everyone’s words — maybe a purpose you didn’t mean to convey but is seen when told to someone with a chronic illness. “Don’t be depressed;” sure I try, but it’s not always that easy. People with chronic illnesses have been and will be living with this for the rest of their life. So maybe instead, skip the jealousy remarks and the depression pick-me-ups because it’s old. I’ve heard them all. How about we talk about things that aren’t going on with my illness? Instead of telling me not to be depressed, how about we do something to take our minds off the pressing problem of my illness? Depression doesn’t stop when you tell someone to be happy. It doesn’t work like that and it doesn’t help. It helps when we crack smiles and hear our laughter filling the hospital corridors.

Please don’t be jealous — you don’t have a whole lot to be jealous about. OK, I might pee in a cool way but it took a lot to get here. My veins are shot it takes six times to get an IV in. I have a large cross that runs up my abdomen and only recently did I become comfortable wearing bikinis. My therapist told me she believes if I didn’t have all the medical traumas I did, I wouldn’t have anxiety and depression. 

So next time I see you, I’ll show you my cool pee trick, but please remember that you’re lucky you don’t have to live with it, or the repercussions it took to get here.