What Is An Invisible Illness?
The term invisible illness applies to conditions that are not easily visible or apparent to others. These illnesses can have a significant impact on a person’s daily life, but their symptoms may not be externally visible.
Students grappling with invisible illnesses face challenges like social isolation, lack of understanding, and academic hurdles. They might experience denial of the validity of their illness, exclusion from social activities, bullying, or difficulties in explaining their condition (or being believed), which affects their overall wellbeing and academic performance.
“[Student] looks like a healthy child but Eosinophilic Esophagitis (EOE) is an invisible disease causing inflammation. My child gets headaches, sore stomachs, needs to go to the toilet a lot, generally feels unwell, and eating is tricky.”
Five Things To Know About Invisible Illnesses
1. Range Of Conditions
Invisible illnesses encompass a wide range of conditions covering both physical and mental health. Examples include chronic pain, Crohn’s disease, diabetes, depression, fibromyalgia, heart conditions, juvenile arthritis, lupus, ME/CFS, lupus, rare diseases, and undiagnosed health conditions.
2. Limited Awareness
Because the symptoms of invisible illnesses are not apparent, students with these conditions often face challenges in getting their condition recognised and understood by others. Families may have to make difficult decisions about when and how to disclose the condition affecting the student.
3. Self Advocacy
Students with invisible illnesses, and their families, often have to be their own advocates and actively communicate their symptoms and needs to education and healthcare professionals. Often there can be resistance because the young person “looks fine”. This is compounded in cases where a diagnosis is not clear.
4. Support And Understanding
Support for students with invisible illnesses may not always be readily available, as these conditions are often not well understood. Lack of visible symptoms can lead to skepticism or disbelief from family, friends, teachers and even healthcare professionals. Students who are rarely or never admitted to hospital are excluded from hospital-based education services such as hospital schools (if available).
So, what are a few ways we can give better support to students with invisible illnesses?
1. Expand Our Understanding Of The Condition
Develop an understanding of the student’s specific condition, its impacts, triggers, and treatments. Gather information from healthcare providers to discuss how the condition affects schooling. MissingSchool’s National Insights for Education Directories is a database of on-demand information at the intersection of health and education and organisations that can help.
2. Keep Family-School Communication Open
Parents, educators, administrators, and healthcare providers will need to keep communication lines open and work together to make sure there is a common understanding about how the invisible illness affects the student and what accommodations might be necessary to enable school and social connections and continuity.
3. Document Adjustments Through An Individual Education Plan (IEP)
If you’re an educator, you can lead the development of an IEP that outlines necessary adjustments and support services. This supports the student in the best way possible, and will help the school to access funding and resources so the plan comes to life and is sustainable.
4. Build A Support Network
Connect with family groups, online communities, and community organisations for advice, supports, shared experiences, and recommendations for strategies and resources. MissingSchool’s parent community and our soon to launch teacher forum are great places to start.
Working together, families and educators can make a huge difference in the school journey of students facing invisible illnesses and in doing so, transform their future.
At MissingSchool, we know how the power of community can galvanise and empower everyone. Together, we can foster an environment where every child feels like they belong. It would be impossible for us to stay the course without your incredible support. There are many ways to help:
- follow along and cheer us on Facebook, Instagram, and LinkedIn
- share this newsletter with your family, friends, or colleagues so we can reach more sick kids, and
- donate towards getting kids with complex conditions back into their classroom.
Every action moves us closer to the finish line: a world where every sick child is seen and heard at school.
Let’s keep connecting!