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Thursday, August 31, 2017

Back to School Special: What Educators Need to Know About IBD

Fun fact: before I worked in my current job in social media marketing, I entertained the idea of being a high school teacher. I “entertained” it so hard that I minored in secondary education, finishing all my courses and observation hours in a high school.

I opted for a different, more Twitter-centric path in the end, but I remember my classes well. I remember learning about how to help kids who have learning disabilities, and how to cater to different types of learning styles. What I don’t remember them mentioning much (if at all) is how to deal with kids who are chronically ill.

This isn’t an indictment of my education –– there are a million and one diseases out there, and it would be awfully hard to teach you what to do in all million and one instances during one college career. But if you’re a teacher, and you have a student with IBD, there are some things you need to know. And since your students might not have the tools to tell you how they’re feeling due to embarrassment, or nerves, or whatever else, I’m here to do the telling for them.

High school: a time for weird haircuts, hating Geometry, and life-altering medical diagnoses
Don’t make them prove that they’re sick
I understand that when working with kids, you have to be tough or they might try to pull one over on you. But when you have a student with IBD who is telling you they can’t participate in gym class, or they need to go to the bathroom fifteen times a day, they aren’t just trying to find excuses to get out of class. Questioning a kid with Crohn’s or Colitis on whether or not they really need to leave class again can make them feel like they have to hide their symptoms, which can make them a lot sicker. Believe them, believe them, believe them.

Work with them and their parents
A hallmark of being sick as a kid or teen? Missing a lot of school. Whether it’s a flare or a hospitalization or just a bad symptom day, your students with IBD are absolutely going to miss school sometimes. They’re going to do it a lot more than your traditionally healthy students. Work with the student, their family, and the administrators to help them catch up, and don’t make them feel like they’re being punished for being sick. Being sick is already a pretty hefty punishment. (And don’t even get me started on the ableism that is “perfect attendance awards.”)

Provide accommodations
A lot of schools don’t allow you to get up and use the restrooms during a test, but IBD students need special accommodations that allow them to do that. Some schools have policies that delineate how many classes you can miss before automatically failing –– IBD patients need accommodations for that, too. Many schools don’t allow you to have snacks in the classroom, but some IBD patients are on diets where they need several small meals a day rather than three large ones. Whatever the case may be, encourage the student and their parents to work out a 504 plan with the school. You can find a handy template for one here.

Be there for them
IBD can be a socially isolating disease. Kids (and adults, too, for that matter) often don’t want to talk about it because they’re embarrassed or afraid of judgement. For that reason, students may not have a ton of advocates at school –– but you can be that advocate. Try to make sure your students know they can come to you if they’re feeling overwhelmed balancing the spinning plates that are school and a chronic illness. They may not have a big circle of supportive peers to turn to, but they can have you.

Each individual student’s situation is going to differ, but it’s important to be aware of their needs going into this school year and forever. Crohn’s and Colitis are very mentally taxing diseases (there’s a significant association between having IBD and having anxiety and depression), and feeling stressed by not having advocates at school can make both the physical and mental symptoms worse. But a little education can go a long way! Whatever illness your student is suffering from, do a little reading up on it, and remember that chronically ill kids are a vulnerable population that need great teachers more than ever.

Tuesday, August 8, 2017

Sick and Tired, But Mostly Tired.

I've been fully living lately.

After a year and a half of extreme sickness –– spending all my free time in bed, not being able to eat, and pretty much never socializing –– my biologics finally kicked in this year, and I kicked back into the high gear of a "normal girl."

One problem?

I'm not a normal girl.

Don't take that the wrong way here –– I know my illness doesn't define me as a person, but it is definitely a big facet of who I am. Even when I'm going through a healthy phase, it's relative. I'm healthy by my standards, not the standards of a 25 year old woman without a chronic illness.

I've done a lot recently that I couldn't do at this time last year. I put on a hard hat and built a house with Habitat for Humanity. I drank the day away at the beach with my best friends on the 4th of July. I biked 20 miles with my co-workers. I traveled solo to London. I climbed a rock wall. I stayed out all night.
I got to spend this 4th of July on the beach with friends instead of in bed, and it was boozy and glorious.
Most recently, I went to Boston for the weekend with my family. It was a great trip, but it confirmed what I've been noticing over the last few months of a constant busy schedule –– that I can't do it all, all the time. That the underlying exhaustion that comes with a chronic illness means that I don't necessarily have the same stamina my friends and family have. That I can definitely go sightseeing and eat at great restaurants and cheer on my (White) Sox at Fenway Park, I am going to need to take a break after. I'm going to need to listen when my body says to slow the hell down.

I've noticed that even at my healthiest, if I do too much for too many days in a row, I crash. I get sicker. My body aches, and I get hit with a fatigue so bad I can't keep my eyes open. I was recently at a music festival (after 3 days of solidly booked, crazy plans), and I got so tired I felt like I had been drugged, and nearly passed out. Guess what? It wasn't drugs –– it was a week of being way too busy in a body that doesn't support that kind of schedule. That's how extreme exhaustion can feel for people with autoimmune diseases. We don't just want a break–– sometimes we physically need one.

Me and my very understanding sister at Boston Harbor - she gets me snacks and air conditioning when I feel faint, and never guilts a nap. These are people you need.
The term "exhaustion" gets a bad rap because sometimes celebrity rehabs use it as a euphemism, but for the sick, we know it's a real thing. And we know how quickly it can hit. And we know it doesn't care about our well-laid plans.

I spent the last night of our Boston trip posted up in a pull out bed at the hotel, room service in my lap and Wedding Crashers on the TV while my family went on a boat cruise. It wasn't the most glamorous bookend to a vacation, but it was what I needed. And that's what I'm trying to get at here –– not that chronically ill folks like myself can't do all the fun things we want, but that we have to be more aware of keeping a balance. That we have to listen to our bodies, and not let "healthy people" make us feel like we're not keeping up. That we may have to prioritize a little bit differently.

So if you've got a chronically ill loved one in your life, check in on them. Make sure they aren't overbooking to keep up with their healthy friends. Make sure they're taking breaks, and that they know that in your company, they should never be embarrassed to say it's time to rest.

And if you're the ill person in question, know your limits and don't be afraid to enforce them. People who don't understand the value of rest are missing out on a lot of great TV movies, anyway.