Pretty Please, No Pity Please

I’ll admit it - when I’m wrapped snugly in my clothes, bent over at 90 degrees, moaning, I look more like a wounded animal than a nineteen year old girl. But nonetheless, this is where I found myself - again - this past week. It’s like I think I get frequent flyer miles at ERs, or some health consolation prize. Whatever the reason, it seems to be my favorite hang out spot this semester.

Armed with my current ever-present companions of pain, nausea, and an empty ostomy bag, I didn’t need a fortune teller to hint that an ER might be in my future. And before I knew it, I was back in the world of the Emergency Department, and everything was the same - the way the IVs beep, babies whimper, doctor’s crocs squeak on the floor, the smell of disinfectant and alcohol swabs, and those blue tourniquets that smell like baby powder.

Infamous for sucky veins - like many IBDers - they called in the IV team to stab me once or twice. The nurse who came from the team recognized me - we had meet a couple of weeks earlier when I was getting another test done. We had the same sentiments for each other - lovely to see you again, but wish I’d rather not. But my day of familiar faces was far from over. The inpatient nurses remembered me, and my own night nurse was who had discharged me a month ago. Semi deja-vu, semi reality.

This time I was smart. I packed a bag and left it in my dorm room for a friend to bring, instead of having her rummage through my things. My friend dutifully brought the bag to me, and stayed for a nice visit - a dose of teenager-ness is always welcome when the average age of the other floor patients is 6. As we were sitting there laughing, a Child Life worker came in to see if I needed anything. After I shook my head, she then informed me that ‘Good Charlotte’ would be in the activity room later. My friend and I looked at each other, laughed, and then asked “Really?”

Yes really. My association of ‘Good Charlotte’ conjures images of my older brother humming their songs years ago. And now they were going to be in the same hospital as me? What an impromptu event: I’d never been to an activity room for any length of time before, but my friend and I agreed to mingle with some famous people, shorten our six degrees of separation.

We were the oldest there. Duh. But really, probably at least a decade older than anyone there. I maneuvered my bulky IV pole beside me and sat down at the kiddie table. The band was supposed to arrive at 2, but they were running a tad late, so we all got to drawing/coloring the hats and bags with fabric markers. The little three year old next to me - we’ll call her Lila - was busy doodling all over her hat, my friend and I made thank you cards for the band.

When they walked in the door, there was a moment of everything being surreal. It reminded me of the token pictures in magazines of a celebrity with a sick child on their lap, and here I was, oddly one of the sick kids this band was visiting.

I expected pity. Maybe some uncomfortableness. But the band just sat down and started drawing right away. My little friend Lila instructed Joel Madden to make a hat, and then (very adorably) proceeded to tell him that “a band is coming at 2!” - which made him smile. They signed CDs and posters, and asked who our favorite princesses are (mine is Mulan, she saves China, best princess ever).

It’s easy for doctors to look at us as a collection of organs and ulcers in a hospital bed or on an examination table. Lately I’ve felt that my quality of life has been severely underestimated; just because I’m chronically ill, doesn’t mean I can’t have a full and wonderful life. I find the pity from the doctors frustrating, in my recent experiences it feels as though they’re fitting me into the typecast sick kid instead of evaluating me as a teenager who’s dealt with chronic illness for almost a decade.

I don’t want pity. I want understanding. When I start crying in an appointment, and the doctor pushes those darned pity tissue at me, I refuse to take them - I don’t want the tissue, I want to feel better. But today, one of the most remarkable things happened. I found myself crying from frustration and exhaustion with the surgeon. His nurse, who was hanging out by the door, was wiping away her own tears at what I was saying, and then went and found me some tissues. Those were understanding tissues, not pity ones.

It’s natural to feel sad for someone going through a hard time. But what if we tried inspired? What if our suffering could be inspiring for doctors to try more, research more, help more? What if our suffering inspired our community to volunteer more, speak up more, accept more?

We live in a deeply compassionate world where humans care for each other. We are programmed to connect, to feel, to love. In some ways, we are made to feel pity. But more often than not, pity does not equal fighting, it usually equals the acceptance of pain and sadness. If little Lila can be ever optimistic and cheery - albeit young and oblivious - then we can learn from her three year old ways.

IBD or not: action is always better than inaction. Fighting is better than resignation. Laughing is better than crying. Coloring with famous people is better than watching TV in your hospital room. Helping is better than hurting. Empathy is better than pity.

And finding a cure, well, that’s better than anything.

Jennie