Resources and Strategies for Managing High School and College with Autoimmune Disease

By Julia Ellis and Alonna Kolobakken, Members of the Young Adult Advisory Council

High school and college can be challenging for any student, but for those living with chronic conditions like autoimmune disease, it can come with unique hurdles. From managing specific meal plans and medication schedules to securing accessible parking or requesting special accommodations from teachers, students with chronic illnesses must often balance their health needs with school responsibilities. Keep reading for practical tips and strategies to help you advocate for yourself and get the support and resources you need!

Navigating Special Diets

Navigating restricted diets like dairy and gluten-free on a high school or university campus can be challenging for autoimmune patients. However, many schools recognize the importance of accommodating these dietary needs and offer various resources to support students. For example, Florida International University (FIU) provides allergen-friendly food sections in dining halls, allowing students to easily identify and choose safe options. Clear labeling of food items is crucial for students with dietary restrictions. FIU ensures that allergen-free options are marked, often with symbols or color-coded labels. Their 8th Street Campus Kitchen has a G8 dining section where the meals are free of the eight most common allergens. Additionally, the university has a dairy-free milk alternatives refrigerator and a gluten-free toaster to prevent cross-contamination.

💡 TIP!  Most universities offer allergen-free handbooks online that give you guidance on how to navigate your university life with a restricted diet. We recommend searching “[Your school’s name] Allergen Guide” – this will help you discover resources that could ease your dining difficulties.

Accessing Parking and Building Entries

Navigating a university campus and its buildings can be challenging, especially those living with physical limitations. High schools and universities are required to implement measures to ensure that students with disabilities, including autoimmune conditions, can access all campus facilities. For example, they must provide ramps, elevators, and automatic doors to eliminate physical barriers. Additionally, they must offer designated parking spaces closer to buildings for students with mobility impairments.

Common accessibility issues include narrow doorways, uneven sidewalks, and lack of accessible restrooms. Ramps and elevators can also be difficult to find. Universities such as Illinois State University, Santa Fe College, Florida Gulf Coast University, and others provide accessibility maps that illustrate where ramps and elevators are located.

Another way to improve building accessibility is to collaborate with students when planning for the implementation of accessibility improvements. For example, FIU’s Disability Resource Center works closely with the Disabled Student Union to gain insight from students with disabilities and what should be done to better their experience at FIU. By collaborating with students, and providing valuable resources such as maps, universities and high schools can create more inclusive and welcoming environments for all students.

💡TIP! Find out if your school provides a map that illustrates options for accessible parking and entryways. If not, offer to collaborate with them to create one!

Managing Pain and Fatigue

College life can be challenging when you’re experiencing pain and fatigue. There are a few steps you can take to support yourself during times of increased pain or fatigue:

• Establish formal accommodations: Establishing formal accommodations with your college or university can protect you during flare-ups. It is best to apply for accommodations before classes start. The school you are attending should have a person or group of people, likely called Accessibility Services—that helps students set up these programs. If your school does not, consider reaching out to an orientation counselor, dean, or student union representative.
• Reach out to professors at the start of the semester: While it may seem intimidating at first, meeting with your professors or teaching assistants at the beginning of the semester to introduce yourself and your accessibility plan. It is not necessary to disclose what condition(s) you are living with (unless you would like to), but alerting the professor to what kind of accommodations you have been granted helps to make sure everyone is on the same page. If you are uncomfortable having this conversation on your own, consider reaching out to accessibility services to see if there is a representative that can accompany you to this meeting.
• Engage with treatments: During times of increased pain or fatigue, it can be difficult to keep up with responsibilities related to your treatment or condition management. It is important to communicate with your treatment providers if you are struggling to keep up with treatment tasks to coordinate a plan that works best for you.

Extracurricular Accommodations

Extracurricular activities such as club participation are an important part of the college experience, and students with disabilities should have the opportunity to participate in these activities. Reaching out to student organizations to see about accommodations to attend meetings and events in a way that works for you is one way to help with your inclusion.

💡TIP! If you are leading a student organization or planning an event, Northwestern University has a guide for creating accessible events. Find the guide here.

You’re not alone—support is available to help you succeed!

Managing life as a high school or college student with a chronic condition requires patience, resilience, and a proactive approach. While the challenges can feel overwhelming, knowing your rights, communicating your needs, and utilizing available resources can make a significant difference. By understanding the specific circumstances you may face and applying the tips offered here, you can advocate for the accommodations you need and create a supportive environment for yourself. Remember, you are not alone! There are communities, resources, and tools available to help you succeed in school while prioritizing your health and well-being.

To learn more about the Autoimmune Association’s Young Adult Advisory Council, click here.