Learn how students living with lupus, parents and caregivers can prepare for school, request accommodations, navigate a return after a lupus flare and build skills for self-advocacy.
Starting a new school year or returning to the classroom can bring a mix of excitement and uncertainty. School accommodations for students with lupus can help address individual needs and create a more supportive learning environment.
Students living with lupus may have additional concerns about managing symptoms, keeping up with schoolwork, explaining an often invisible illness and making sure the right supports are in place.
Fatigue, pain and other lupus symptoms can fluctuate and may not always be visible to teachers, classmates or school staff. A lupus flare can also affect a student’s ability to attend school or participate in their usual activities.
Having a plan, communicating your needs and knowing where to turn for support can help make school more manageable.
Natasha Tran, founder of the non-profit Take a Pain Check Foundation, shared her personal experiences seeking accommodations while living with juvenile idiopathic arthritis (JIA). Natasha was diagnosed with JIA at eight years old and experienced challenges managing her symptoms while at school.
“There is no one-size-fits-all accommodation… but accommodations need to be student-centred.”
Because of these experiences, Natasha has made an effort to support individuals living with invisible illnesses in learning how to advocate for themselves in academic environments.
Preparing for School with Lupus
When possible, begin conversations about accommodations before the school year or academic term starts. Developing an appropriate accommodation plan can take time, and advance notice gives students, families and schools an opportunity to make sure the necessary supports are in place.
If you already have an accommodation plan, check whether it is still active and whether anything needs to be renewed or updated. Lupus symptoms and individual needs can change over time, so accommodations that worked previously may need to be adjusted.
For younger students, parents and caregivers may take the lead in these conversations. As students get older, they can gradually become more involved in communicating their own needs and managing their accommodations.
How to Request School Accommodations
Accommodations should reflect the individual needs of the student. What helps one person living with lupus may not be appropriate or necessary for another.
Students and families can begin by contacting their school to discuss what support may be available. Depending on the student’s age and school, this could involve teachers, guidance counsellors, accessibility or student support staff, disability coordinators, professors or school administration.
Schools may also request supporting medical documentation when developing or updating an accommodation plan. Your health care team may be able to provide information about your individual needs and recommended supports.
Requirements and available accommodations can vary between schools, school boards, provinces and territories, and post-secondary institutions. Ask your school what process and documentation are required.
Examples of Accommodations That May Help:
Depending on a student’s individual needs, possible accommodations may include:
- Additional time to complete assignments, tests or exams
- Flexibility around attendance or absences related to lupus symptoms, medical appointments or treatment
- Additional breaks during the school day
- Extra time to move between classrooms
- Access to class notes, recorded lessons or other learning materials when appropriate
- Adjustments to physical education or other physically demanding activities
- Ergonomic tools or seating supports
- Flexibility with workload or deadlines during periods of increased symptoms
- A plan for making up missed work following an absence
These are examples only. Students should work with their school, family and health care team, as appropriate, to determine what supports meet their individual needs.
Tips for Advocating for Yourself at School:
Learning to communicate what you need can make navigating school with lupus easier.
- Connect regularly with your school’s accommodation, accessibility or student support staff.
- Let teachers or professors know about approved accommodations early in the school year or academic term.
- Learn about your school’s accommodation policies and the supports available to you.
- Have any required medical documentation, such as a health care provider’s letter, prepared when needed.
- Be clear and specific when communicating what you need.
- Build relationships with teachers, professors, guidance counsellors and disability or accessibility coordinators.
- Speak up if an accommodation is not working or your needs have changed.
- Understand how lupus affects you personally so you can better communicate your needs.
- Practice self-care and recognize your limits to help avoid overexertion.
Returning to School After a Lupus Flare
Lupus flares, medical appointments, hospitalizations or periods of increased symptoms can sometimes result in students missing school.
Returning after an extended absence may take time, particularly when fatigue or other symptoms continue. Depending on the student’s individual circumstances and the advice of their health care team, a gradual return to school may be helpful.
This could include shorter school days, a temporarily reduced schedule or workload, additional rest periods, or gradually increasing participation over time.
Students and families can work with the school and health care team to develop a return-to-school plan that supports the student’s health while helping them reconnect with their education.
Staying Connected to School Life
School is about more than academics. Friendships, activities and feeling connected to the school community can also be an important part of a student’s experience.
Where possible and appropriate for the individual student, accommodations can help students living with lupus continue participating in the social aspects of school. This might include spending time with friends, attending school events, participating in clubs or taking part in physical activity within their abilities.
Every student’s experience with lupus is different. The goal is to find supports that help the student participate in school life while respecting their health and individual needs.
Tips for requesting accommodation:
- Regularly schedule check-ins with the student accommodation facilitator or department.
- Email professors before school starts so they are aware of your accommodation needs, such as recording lessons or extra time to and from class.
- Invest in ergonomic tools that make you comfortable, such as wrist guards, a gel seat cushion or pencil grips. Most occupational therapists can provide these items.
- Know your rights, research school policies and available accommodations.
- Be prepared and have all medical documentation ready if necessary, such as doctor’s notes or accommodation letters.
- Be assertive, clear and state your needs directly (“I need this,” or “I need extra time”).
- Be persistent and do not give up when facing ignorance, as advocating for yourself also helps other students with disabilities.
- Build relationships with teachers, professors, and disability coordinators.
- Practice self-care and know your limits to avoid overexertion.
Helpful tools for students:
Request for Accommodations Letter: Use this resource to help communicate accommodation needs with your school.
Back to School Accommodations Checklist: Use the checklist to help prepare for the school year and make sure important conversations and supports are considered.
Supporting Your Child with Lupus at School
The self-advocacy journey for students living with lupus often begins with support from their parents or caregivers.
Having an open dialogue about what is and isn’t working is important. Listen to your child’s experiences and encourage them to communicate when they need additional support.
As children and adolescents grow, they can gradually take a more active role in understanding their accommodations, communicating their needs and advocating for themselves.
Parents and caregivers can support this process by involving their child in conversations with teachers and school staff in ways that are appropriate for their age and individual needs. Building these skills over time can help students become more confident in speaking up for themselves.
“Advocating for your child will encourage them to advocate for themselves,” said Natasha.
Tips for parents and caregivers:
- Listen to your child’s concerns, believe them and be proactive when something isn’t working.
- Maintain communication with the people involved in supporting your child, including school staff and their health care team when appropriate.
- Ask your child what is working well and where they may need additional support.
- Encourage your child to participate in conversations about their accommodations as they become ready.
- Keep records of important conversations, accommodation plans and relevant incidents or concerns, including dates and details.
- Review accommodations periodically, particularly if your child’s symptoms or needs change.
Watch: Let's Talk Lupus — Back to School Accommodations
Hear more about navigating accommodations and advocating for students living with chronic illness.
Discover More Lupus Resources
Having the right information and support can help students living with lupus and their families feel more prepared to navigate school.
Explore the Everything Lupus Resource Hub for additional Lupus Canada resources, tools and information.
Additional community resources for students and caregivers are available through Take a Pain Check Foundation, Inclusion Canada, BounceBack Ontario and other disability support organizations.
Whether you’re a student, parent, caregiver or educator, learning about lupus, communicating individual needs and knowing what supports are available can help create a more supportive school experience.