5 Tips for Navigating School with Arthritis
Steve Sutherland was in the thick of his master’s degree and facing a 120-page thesis when he started experiencing swelling in his joints.
“The symptoms came on quickly,” he said. “Within a month and a half, I was diagnosed with rheumatoid arthritis and had permanent joint damage.”
Sutherland thought arthritis only affected older people. He worried about burdening his family and questioned how he would finish school while dealing with extreme exhaustion and joint pain in his hands. For a long time, Sutherland concealed his arthritis and its toll on everyday life. Now, years after graduating, he wants students living with chronic disease to know that prioritizing health is necessary.
“Students always have concerns about grades and graduating, but your body’s needs are more important than everything else,” he said. “I now live with complications, so don’t be afraid to talk about your arthritis and take care of yourself.”
As students of all ages head back to school, Sutherland is sharing advice to help individuals living with chronic diseases, like rheumatoid arthritis, navigate their education experience with less stress and strain on their health.
Reach Out for Resources
Schools and teachers – from elementary to high school and post-secondary – can’t help if they don’t know what’s going on. “It took me a long time to share my arthritis with folks and talk about my needs,” Sutherland said. His biggest piece of advice: don’t suffer in silence; ask for available support. Student unions can be a great place to start when searching for resources and services on campus. Colleges and universities have departments and centres dedicated to accessibility, as well as counselling services, adaptive technology departments and more.
For students at elementary and high school levels in Canada, parents should reach out to a child’s principal and teacher after an arthritis diagnosis. Many people don’t understand that arthritis, and the medications used to treat it, can cause extreme exhaustion and other symptoms that interfere with a child’s ability to function in school and complete homework. Since provincial governments are responsible for education in Canada, parents should also check their province/territory’s website for inclusive education resources. Some children with Juvenile Idiopathic Arthritis require Individual Education Plans (IEPs), which describe services and supports needed at school.
Helpful Links:
- Disability/education advocacy: National Educational Association of Disabled Students
- Post-secondary accessibility services example: University of Toronto’s Accessibility Services
- Provincial government website examples: Inclusive Education Resources in British Columbia, Special Education in Ontario, Resources for Students with Disabilities in Alberta, etc.
- Middle/High School Resource Toolkit by Cassie + Friends
- Talking to Your Teacher About Your Juvenile Idiopathic Arthritis (JIA) by SickKids
- Individual Education Plans: A Guide for Parents
Make Mental Health a Priority
Students living with a chronic disease, like arthritis, can experience added levels of stress in school due to uncertainty caused by symptoms and medication side effects. Up to 75 per cent of mental health challenges are diagnosed between age 16 and 24 and individuals with arthritis are more likely to experience anxiety and depression. Sutherland emphasized the need for mental health support. “When I was first diagnosed, I wish I had sought out mental health help to better understand what I was going through,” he said. “It’s really important that you access supports even if you don’t think your mental health is struggling because arthritis is just as much about the ‘mental’ as it is about the ‘physical.’”
While Sutherland admitted mental health care isn’t always easy to access, he said services do exist at most universities and colleges. And more help is on the way as, in the 2024 budget, the federal government prioritized youth mental health by dedicating $500 million over five years to the creation of a new Youth Mental Health Fund to help younger Canadians access mental health care. The Government of Canada said the fund is designed to help community health organizations provide more care for younger Canadians and refer them to additional mental health services when necessary.
“Don’t be afraid to ask for help,” Sutherland said.
Helpful Links:
- National Standard for Mental Health and Well-Being for Post-Secondary Students by the Mental Health Commission of Canada
- Kids Help Phone
- Mental Health Research at Arthritis Research Canada
- HelpStartsHere in British Columbia
- Erase = Expect Respect & a Safe Education
- Kelty Mental Health Resource Centre at BC Children’s Hospital
- Post-Secondary mental health services example: Student Psychotherapy and Mental Health Services at the University of Ottawa
Turn to Tech
Writing, typing and sitting for long periods are part of school at all levels and can be challenging for people living with arthritis. Sutherland’s symptoms were concentrated in his hands, and he needed to type a 100+ page thesis, so he reached out to his faculty and advisor. “I needed a plan for completing my degree,” he said. “The university was really helpful in bringing in adaptive technologies like speech recognition software.”
Sutherland also had trouble adjusting to his medications. “They made it difficult for me to sit for hours in lectures and discussion sessions,” he said. This was back in 2016, before pandemic-driven virtual learning. Some of Sutherland’s professors allowed him to join virtually; others permitted him to stand, walk around the class and have fellow students take notes on his behalf.
“The technologies are there now,” Sutherland said. “Use every piece of technology available to you.”
School Tech for Arthritis:
- Speech recognition software for writing: Dragon Naturally Speaking, Google Docs voice typing, Otter.ca, etc.
- Recording pens for note taking: Livescribe Smart Pen, Neo Smart Pen, Moleskine Smart Writing System and more
- Lecture recording software like Microsoft One Note and Panopto or even Zoom and PowerPoint
Helpful Links:
- Many post-secondary institutions offer the above technologies to students. E.g. University of Victoria, British Columbia Institute of Technology, University of Toronto, University of Calgary, McGill, Inclusive Technology Lab at UBC Okanagan, etc.
- Assistive Technology BC
- Students at the elementary and high school levels should reach out to their school boards for information on available assistive devices: E.g., specialized equipment at the Toronto District School Board
Know About Nutrition
Student life isn’t always healthy. College and university students are often juggling jobs, lectures, seminars, assignments, studying, extracurricular activities and more. This lifestyle can lead to grabbing meals on the go and relying on fast food. However, highly processed foods can cause inflammation in the body, worsening symptoms for students with arthritis.
“School keeps you very busy, and I was working, so adjusting to eating properly and removing foods that might cause issues with my arthritis was super difficult,” Sutherland said. “I had to avoid all processed foods.”
While it can be challenging to work healthy eating habits into the university lifestyle, nutrition is an important aspect of managing arthritis and being successful in school. In addition to school and university resources, family doctors and rheumatologists can provide nutrition advice and information and refer to other care providers.
Helpful Links:
- Guide to Healthy Eating at the University of Waterloo
- Eating Well as a Student in Residence (Concordia University)
- Food and Nutrition at the University of British Columbia
- U of C professor on the critical role nutrition plays in improving mental health
- Healthy Eating Resources by Alberta Health Services
- Healthy Eating Education Activities by PHE Canada (by grade level)
Find Your Balance
Sutherland’s master’s degree was a two-year program in political science. It took him four and a half years to complete. “There were times in school when I was just exhausted,” he said. “It took me a long time to learn my limits.”
Initially, Sutherland struggled to accept how arthritis was impacting his education. “Taking longer to finish my degree was difficult because I like to get things done in the timeline I set for myself,” he said. “Arthritis disrupted my plans, and it wasn’t easy at first, but eventually, I looked at it as an opportunity to dig deeper into my project.”
Today, Sutherland is the Director of Communications and Public Relations for the Métis National Council and, in general, he finds most employers to be accommodating and supportive of his arthritis.
People living with arthritis experience different symptoms, take different medications and find different coping strategies. Looking back, Sutherland regrets not finding ways to adapt his hobbies to help with balance and self-care.
“I gave up a lot of my hobbies and didn’t’ try to find new ones while in school” he said. “Find time for hobbies that work for you because they’re good for your mental health.”
