ulcerative colitis

Life is unpredictable. We can make plans and do our best to follow through, but we don’t always have control. Things just happen. No matter how old we are or experienced we may be, we have to adjust each time — and the adjustments never get easier, whether they’re good or bad.

A lot of these happenstances will be happy ones. But there’ll inevitably be an event that’ll disrupt your life in an unfortunate way. Arguably, one of the most difficult curveballs is a new life-altering diagnosis.

Since my diagnosis of ulcerative colitis at 17 years old, I’ve had over 15 major operations. This all began when I was in high school, and I was terrified. I didn’t know how to go back to school surrounded by people who thought I was a normal, healthy teenager. Now that I’m 23, I have a permanent ileostomy (which means I wear a bag on my stomach to collect waste). I’m still in community college, working on general education courses.

I’ve had my fair share of ups and downs when it comes to school and my illness. It took me a little while to feel confident again, and to figure out how to carry on throughout my day like anyone else. But if I’ve learned anything from all of this, it’s how to adjust. Here are a few tips and tricks to help you manage going back to school after a life-changing diagnosis.

1. Stop and breathe

It’s important that you understand the key words in your diagnosis. For example, “chronic” doesn’t mean that you’ll always feel this ill. There’s also a difference between “life-altering” and “life-threatening.”

Making this distinction — and truly understanding it — will change your outlook. Your condition is always going to be part of your life, but it doesn’t necessarily have to be your life.

My amazing ostomy nurse, Bev, came into my room today to talk to me. In September, a nursing student event is being held at another nearby hospital and it's all about ostomies! Very few nurses work with ostomies on a regular basis and this event is set up like a Q & A. Bev asked me if I would like to be on the panel with other "experts" so that nursing students could learn from someone who actually has an ostomy and knows how to take care of one. I couldn't be more thrilled! More than 80 nursing students have already registered for this event so far and I can't wait to be a part of this. Opportunities like this make all of the hardships worth it. If I can raise awareness or educate someone or even help a nurse help the next ostomy patient they have, it's all worth it. I cannot wait!! . . . . #spoonie #spooniefamily #IBD #IBDfamily #ulcerativecolitis #crohns #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #ileostomy #stoma #ostomy #urostomy #colostomy #surgery #girlswithguts #chronicallymotivated

A post shared by Liesl Marie Peters (@lieslmariepeters) on

2. Give yourself a break

An important part of taking care of yourself is being aware of your limitations. If you can’t go to school full time, there’s no shame in that. What matters is that you’re healthy and doing well in your courses.

Stress is also a huge component when it comes to how we physically feel, and it can make your condition worse. Make sure your schedule is going to accommodate you and what you need.

3. Coordinate with your school

Speak with your doctor and coordinate with your school’s disability office or access services. Usually, we associate “disability” or “access” with ramps and elevators, but accessibility isn’t exclusive to those with physical limitations.

You may not feel that you need any sort of accommodations in school, but it’s always better to be safe than sorry. For instance, my letter of accommodation has it marked that I’m allowed to sit closer to the door and that I have permission to step out for the bathroom without disrupting class. I’m also allowed food and water if need be. These are simple accommodations, but really helpful.

4. You don’t have to discuss your condition with your instructors

All your instructors need to know are the accommodations recommended on the sheet you give them, and they’ll do their best to make sure you have them. You don’t owe any of them an explanation.

The only people that need to know what’s going on with you medically are you, your doctor, and access services themselves, so they can help you get the accommodations you need. If you have problems with any instructors, go to access services and speak to them about what to do.

5. Hope for the best, but be prepared for the worst

I don’t know about you, but I always keep an umbrella in my car just in case it decides to start raining on my way to school. You should do the same with any medications or medical supplies you might need. I have a bag sitting behind the driver’s seat of my car with ostomy supplies, just so I’m prepared for the possibility of my ileostomy leaking when I’m not at home.

6. Above all else, build a supportive community around you

As if having a chronic illness isn’t difficult enough, it’s also exhausting — mentally and emotionally — when your friends aren’t supportive. The sad truth is that many will fall away and family will have a hard time understanding. (I have a close relative who’ll visit me in the hospital after a major operation and will still ask me if I’ll make it to the family get-together that weekend.)

Having a supportive network of people around you who are understanding is key. When you’re too tired or ill to go out with friends, it’s much more comforting to hear, “It’s honestly fine! It’s totally out of your control! We can absolutely reschedule!” instead of, “You were just fine yesterday. Why is today different all of a sudden?”

Hashtags on Instagram are how I found other people with the same health problems as me, and now I have an online family to turn to when no one else understands.

Going back to school is stressful for everyone, healthy or not. But knowing how to manage that stress and being as prepared as possible can help ease your anxieties. It may take a couple of weeks to get into the routine that’s right for you, but believe me when I say that you can do this. You have a chronic illness, but it does not have you.


Liesl Peters

Liesl Peters is the author of The Spoonie Diaries and has been living with ulcerative colitis since she was 17 years old. Follow her journey on Instagram.