Thursday, September 13, 2012

Guest Post: Jaime's Story

We're so excited to be featuring Jaime, an accomplished advocate for those with IBD. Jaime is a weekly contributor to Healthline’s  This Week in Crohn’s and IBD support advocate for Support Crohn’s Disease and Ulcerative Colitis.

'A Letter to My 15-Year-Old Self'

A couple of weeks ago, a member posted a question on the Facebook page I help admin. She was asking for tips on how to survive going back to school. This wasn’t just your every day run of the mill question for me; it tugged at my heartstrings a little. 

You see, the question came from a 15-year-old girl who was getting ready to head back to high school in a few days. She was filled with all the same, familiar (haunting even), worries that your typical teen would have before heading back to high school after a two-month hiatus — only in this case, she has ulcerative colitis. Now pile those worries on top of feeling like you’re under a microscope every time you have to abruptly leave your seat and head to your teacher’s desk to request a bathroom pass while your peers stare at your back; and we all know, sometimes waiting is not an option and an abrupt exit is necessary. And those extended absences, don’t even get me started on those … I started getting anxious for her. 

So as I started writing out my “back-to-school” tips for this girl, I saw my own experiences and struggles flash before my eyes. Before I knew it, the list started to take shape like the letter I wish I could have left for my 15-year-old self over half a lifetime ago. 

Here’s how it went… (P.S., I’ve edited certain parts to help organize it better and added additional information I intend to pass on to Jane.)

Hi Jane,
If I could bring my 15-year-old self back to talk to you, I would. But since I can't, I will have to go off of my memories of 15 years ago. By now, you probably know to mentally map out where every restroom is located. Coming and going from school during flares and other illnesses is the pits. I remember those days well... always felt like I had to work hard and refriend my friends. 

Tip #1. Maintain Friendships.
Whenever I came back to school, I always had this awkward feeling when rejoining my friends for lunch or on a break. It was if I had missed a lifetime. Certain inside jokes I once would have been part of, were now lost on me.  When it came to lunchtime or breaks we’d usually meet in the same places. On occasion those spots would have to change for one reason or another, and when they did I felt awkward wandering around looking for my friends. 

Who were these new people? I’d only been gone for a week, maybe two (sometimes more)? New people had joined our group and now looked at me odd as if I was the “new person.” I felt abandoned in some ways. 

But in reality, I had abandoned them — unfriended if you will — because when I was not at school, I barely spoke to a soul. In teenage land a lot can happen when you’re gone for 10 days or 5 weeks, let alone two-whole semesters. 

Talking to some of them now (15 years later), a few didn't even know I was so sick or what with. So maintaining your friendships at school even when away will help alleviate some of that "heading back to school" anxiety that creeps up when you are coming off an extended illness and are physically ready to go back. Here are some other helpful tips...

Tip #2. Back-Up Clothing. 
Keep an extra set of clothes in your locker and/or car. I considered this a mental trick, I knew they were there and never had to use them; but felt safe knowing they were there. If you keep your spare clothing in the car, this means that if you have that “oh no” feeling while out and about — it’s okay, you have backup. Always keep a sweater or jacket in your backpack that you can tie around your waist, just in case something was to happen.
Tip #3. Educate Your Educators. 
Either go by yourself, or have your academic adviser/guidance counselor speak to your teachers when they are on their planning hour or before class starts. I recommend having an advisor or counselor with you. These are the most important areas to cover:

a) The CCFA has an amazing guide to help educate your educators. Yep. You will have to be the teacher in this instance. I recommend visiting the link and reviewing the entire page. Next, copy and paste the relevant areas that apply to you on one document, and then print it out to dispense to your advisor/counselor and teachers. Here’s the link.

b) Reinforce the fact that you may need to abruptly leave class and can they buddy you up with someone who is a good note taker (every class has one); if you don't feel comfortable with that, ask if you can leave a digital recorder running at their desk to record the lesson. 

c) Along with having to leave abruptly, you may be out of the classroom when this class ends and the next one would begin. You may need them to hold your belongings at their desk so you can retrieve them as efficiently as possible so as to avoid disruption of their next class.

d) Your illness may cause extended absences, how can you best communicate with them (email, voice mail, school website) to keep your assignments on target.

Tip #4. Get a Permanent Bathroom Pass!
Get a permanent bathroom pass. If your school doesn’t have one yet, have them make you one. In the U.S., IBD is now recognized under the ADA and you cannot be denied bathroom access at school or even while out and shopping. I waited far too long to speak up, and wish I had asked for one sooner. Once they made one for me, my school’s secretary was nice enough to laminate the pass. What a smart lady!

In the meantime, you can get a Medical Alert Restroom Access pass from; this may be especially helpful to get the ball rolling at your school. But I do recommend getting a school-issued pass. Why? In the event someone not familiar with you or your situation challenges your being out of class in a not-so-opportune moment, this is your safety net.

So, I got a little exclamation mark happy toward the end; it happens. I also might have been overcompensating with those marks, because of some of the darker memories swirling around my brain as I wrote the tips out. 

I didn’t get into all the intricacies that led up to my figuring out these tips, like a decade’s worth of misdiagnoses and failed treatments before I was diagnosed with Crohn’s, or how educators whom I had once trusted as confidants began to doubt my illness. Instead, I wanted to give Jane as much information as possible free of the baggage that led me to learn it in the first place. I can leave those stories for another post.  

But for now, Jane said the tips helped and I’m patiently (okay excitedly) awaiting to hear how her first week went. In the end, I think my 15-year-old self would approve.


1 comment:

  1. and take lots of immodium in you pocket just in case of a flare it will make you fill a little more at ease