Lupus Advocate + Youth Mentor
Maryse Hendi, 20, suffered from unexplained stomach aches, muscle pains, and joint pains throughout her childhood, eventually becoming so bad that she had to miss school. At first, her family doctor brushed her symptoms off as ‘just growing pains.’ With persistence, several tests, and finally a referral to the Alberta Children’s Hospital Rheumatology Clinic, she was diagnosed with Systemic Lupus Erythematosus (SLE), also known as lupus, at just 10 years old.
When asked what life with lupus is like, Maryse shares that due to the many challenges of her disease, she constantly feels like she is working twice as hard as a “healthy” person to compensate for lost time. Frequent medical appointments and treatment sessions as well as just finding the energy to take care of herself have led to falling behind in her schoolwork and missing out on social activities with friends. A day doesn’t go by where she isn’t wondering what new health challenge is waiting around the corner for her – an anxiety that has made it difficult to plan for the future.
Maryse credits Cassie + Friends (C+F) – a national charity working to transform the lives of youth and families affected by childhood rheumatic diseases – for helping her to see that she is not alone. At C+F, she’s been able to connect with other youth, attend educational events, and take on a leadership role as a Youth Ambassador. Those opportunities, along with the ongoing support of her pediatric rheumatology team, helped her to gain skills to manage and cope with her lupus symptoms and stressors in a healthy way. That’s why when the chance presented itself, she was thrilled to step-up to support others as part of the new C+F Youth Mentorship Program launched in partnership with researchers at SickKids and Jane App.
“Lupus may be a disease of a thousand faces, but we can still help each other feel seen and validated in our experiences,” says Maryse. “It’s so important to believe youth living with Lupus when they say they are in pain or feeling unwell, and to provide emotional support in the ways that they need.”
C+F’s Youth Mentorship Program is one piece of their newly announced strategy to transform youth mental health in pediatric rheumatic disease over the next three years. The program was launched on May 7th – National Child and Youth Mental Health Day – alongside a new research partnership with Brain Canada that will provide $480,000 in funding to improve our understanding of the prevention, diagnosis and treatment of mental illnesses in children and youth with rheumatic disease.
Through the years, Maryse has learned the value of taking care of her mental health and minimizing stress, which can cause her symptoms to flare up. “Anxiety, depression, and ‘chronic illness burnout’ are far too common among people with lupus, and we need to change that. Never be ashamed to reach out for help,” says Maryse.
She also believes that awareness creates kindness, which is why, she says, we should be striving for widespread lupus awareness in our communities, not just in May – Lupus Awareness Month – but all year round, in our day-to-day lives.
If you are a young person between the ages of 12-26 who has been diagnosed with a rheumatic disease and would like to speak with a trained peer mentor who also lives with a rheumatic condition, please visit http://cassieandfriends.ca/youthmentorship to get connected.