YHS Talks Returns!
Students and staff gathered on the morning of Wednesday, May 4th for a York House School tradition, YHS Talks, an event where students share personal stories and life lessons. Speakers included three Grade 11 students, as well as a surprise staff speaker, Mme Jensen. The event was incredibly inspiring – there was certainly a strong sense of togetherness and community in the theatre! Below is Cassie’s speech on her journey with juvenile idiopathic arthritis (JIA) and starting the Cassie + Friends charity.
My Journey with Juvenile Idiopathic Arthritis
By Cassie, Grade 11
When I was twenty months I was diagnosed with a rare illness I have had to manage my whole life. My name is Cassie and I am in Grade 11 at York House. If you do know me, you would know that I have a positive attitude, but what you may not know about me is that I have a chronic rheumatic disease called juvenile idiopathic arthritis.
When I was only twenty months juvenile arthritis struck, and over the last fifteen years, I have learned different ways to cope with this disease. The two strategies that have been most valuable to me are making connections with people going through the same experience and maintaining a positive attitude.
Let’s rewind fifteen years. When I was twenty months I woke up one morning and I wouldn’t walk, not couldn’t walk, but wouldn’t walk. This was an abrupt change and as you can imagine my parents were terrified. My left knee was so swollen, and the last thing anyone was thinking was that it was arthritis. Immediately my parents took me to the emergency room at Children’s Hospital where they did thousands of blood tests, x-rays, MRIs, and examinations until I eventually was diagnosed with juvenile idiopathic arthritis.
You might have heard people complaining “my arthritis in my back hurts” or “my fingers are sore from arthritis”, and that would usually come from an older person but, contrary to what you may think arthritis can be found in kids as well, but it is called juvenile arthritis. It is an auto-immune chronic illness that comes out of nowhere, where your joints become swollen and sore making it hard, and sometimes impossible, to put weight on them and do many activities in everyday life.
Initially, only my knees were affected but it rapidly spread until sixteen joints were involved, and I became very limited in all of my movement. The first few years after my diagnosis were rough, trying different medications until I found what was right for me. My parents would have to pin me down because I would scream not wanting my mom to give me my second injection of the week. I took pills with horrible side effects making me vomit; all the while my family searched for different strategies to make this easier for me. I was just a kid and I couldn’t understand why the medication that was supposed to make me feel better, made me feel so sick. Early on, these physical aspects were harder for me, but as I got older I understood what would help with my pain and how to manage it better. It got more under control due to the medications I take and now is mainly in both my ankles, knees, and wrists.
Many people believe when you have a disease that causes you physical disability you are unable to do any sports, but actually, physical activity allows someone with juvenile arthritis to maintain mobility and ensure their joints don’t get stiff. I dance competitively some weeks in the studio for over fifteen hours. Because of the pain in my joints, there are times when I have to sit out and watch, or I can’t participate in a performance or competition but how I’ve learned to push through this is what I would like to share with you.
As I got older the physical pain became easier to cope with, and the mental aspects became more difficult. I felt alone and it was unfair that I was the one who had arthritis. Through all of this, the two things that have helped me the most to get through this are surrounding myself with people who support me, and maintaining a positive attitude.
Soon after I was diagnosed, my parents wanted to make a difference and help other kids and their families living in the same situation as us. In 2008 my dad participated in the Scotiabank run, and we all went out to watch him in the pouring rain to run his first-ever charity race. He had sent out emails to his friends prior asking for donations to raise money for The Arthritis Society, which resulted in a huge contribution. Like me, my parents were searching for support for kids and their families with juvenile arthritis. The Arthritis Society mainly focuses on all people suffering from arthritis but there was no separate branch for children. That rainy day under the tent at the Scotiabank run, while my dad was running, Cassie and Friends was born. This organization was started by my parents to support kids and families suffering from juvenile arthritis across Canada, and is now involved in research all around the world! If you want to learn more about what the charity does, visit Cassie and Friends and we are always looking for donations or volunteers!
Now back to how it helped me, Cassie and Friends gave me the opportunity to meet and make connections with other kids going through a similar experience. As I said before, I felt very alone as if I was the only one going through this. I would cry at night feeling like this was so unfair and why was I the one who had to manage this disease. Meeting kids my age allowed me to build a network of people I could rely on. I get to talk to others who are on the same medications as me, dealing with the same side effects, and having the same pain as me. These connections are very valuable and I know I can always reach out to the friends I have made for help. This has shown me how important it is to seek out others who have gone through similar struggles as me no matter what I am dealing with. Of course, support from friends and family is very helpful but support from people who have shared experiences and can actually understand what you are going through is something different.
The second strategy that has been helpful to me throughout all these years is maintaining a positive attitude. I know you have probably heard this over and over. Everyone says to be positive! Things will get better! And maybe you don’t believe them but, I can show you that this works, and it’s within your power to make things better for yourself. I am not saying to hide your feelings. Being upset should never be ignored. Sometimes it is necessary to cry or be angry, but finding the positives in situations has really helped me in many ways; such as how I have learned to take control of my own health, the positive impact I have made on others, and making sure to starting each day fresh. My attitude has allowed me to push through the physical pain and the accompanying mental challenges that come from arthritis. Even on the most difficult days when I have to watch my dance group rehearse without me, this is when I need this optimism the most, and it brings me back to the studio the next day with an open mind. This is the final message I would like to pass on to you. This positive attitude makes a bigger impact than you may think. It has allowed me to push through the hard days and achieve my goals.
Okay, now that you know me, you know that I have juvenile arthritis and you also know that I have a positive attitude that allows me to overcome every challenge that this comes with.
