Imagine this: You’re nine years old and you’re told you have an incurable disease. How would you react?  The way I saw it, I had two options: be afraid of this disease and let it control my life, or embrace the healthy times and make the most of every day. I chose the latter and since my diagnosis I’ve tried to make the most of every day, even if that means just focusing on the smallest of victories.

Oh, the dreaded d-word. Typically, I can't say I depend on US Government documents for my definitions, but I feel like this is one of those situations where I can. Per various acts, written over many, many decades, a "disability" is frequently referred to as something that is a physical and mental impairment that substantially limits one or more 'major life activities’. So, with that definition in mind, as offices on college campuses around the country change their names from "disability office" to "accessibility office," I'm left wondering what it is they're trying to achieve, and why so many people are scared of being classified as having a "disability."

If I knew then what I know now, going away to camp would be a whole different story. I was never one who liked being away from home-especially at night. The thought of being far away from home (in a completely different state mind you) and spending the night not in my bed was completely out of the question. I was not going to leave the comfort and security of my own home. Oh, how I wish I would have convinced myself to participate sooner.

As a patient with Inflammatory Bowel Disease, visiting public restrooms is an incredibly regular activity. Such a regular activity, in fact, that I have — on more than one occasion — considered making a photo-series of all of the restrooms I’ve visited (check this one out though, it’s pretty cool - https://tinyurl.com/ya6mbj7k). Over the course of my many excursions to public restrooms, however, I’ve managed to compile a list of characteristics that make them an absolute pleasure to visit. Here's the list:

This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.

Note: As a patient advocate, I wrote this article to raise awareness (not to make anyone feel badly). So please read it with an open mind and I hope you enjoy!

Living with IBD is very challenging. It’s hard work managing a chronic condition 24/7/365 – but somehow, we do it! We never give up, because we are stronger than IBD.

I believe that all my fellow IBD friends will agree with me on this list of concerns that we face:

Dear Younger Me,

I know you're scared and this past week in the hospital has not been all that great. All the tests and doctors are so new to you. The doctors said you have Crohn’s disease. It’s going to be okay, I promise.

I wish I could tell you these next few years will be easy, but they won't. You're going to go through some pretty tough stuff that many kids your age will have a hard time relating to. Most won't even understand it and that's okay.

It is human nature to want to learn and question the world around us. It is natural for us to seek innovation, invent new things and express new theories. This is how we improve and how we have achieved the advances we have today. Nothing is wrong with this innate desire to learn and be curious, except when you’re the one that’s being questioned and or are the object of someone’s curiosity.

When I was first told I had colitis I was only 7 years old. I had really bad cramps and started pooping blood. We went to the doctor and he checked me out. They didn’t really know what was wrong at first and we had to go back to the doctor again until my mom insisted that something was really wrong. They took some blood. After that, they put me in a special room where he put an I.V. in and covered it with what felt like a cast. In 30 minutes I was put on a stretcher and rushed out the door and into an ambulance. Off to a different hospital. I knew it would take a while, so I fell asleep, next thing I knew I was on a hospital bed with my mom. My favorite blanket was with me, but I didn’t know how it got there.

To my 12-year-old, newly diagnosed self:

For a long time, you will regret your decision to tell your parents that you were hurting. You will wish you had kept the pain and the blood and the fear a secret so that you wouldn’t be different and sick.  You will wish it very much, using up your wishes on birthday cakes and fallen eyelashes. But first, let me tell you, you did the right thing and that not telling your parents would not have kept you from getting sick.