Meet “Take a Pain Check”: Unmasking Juvenile Idiopathic Arthritis (JIA), Ableism, and Accessibility
Natasha Trehan and Trish Peters, two young adults from Toronto who live with Juvenile Idiopathic Arthritis (JIA) have started a new podcast called Take a Pain Check. Their aim is to create a platform for youth living with arthritis and other rheumatic diseases, to raise awareness about support groups and make a meaningful impact on the community. They relate their own life stories and involve guest speakers to share their experiences. Their mission is to empower youth with disabilities to advocate for themselves. Their podcast is available on Spotify, Anchor, Apple Podcasts and YouTube. Episodes drop weekly so make sure to stay tuned!
Introduce yourselves. Who are you? What’s your story?
Natasha: Hi! My name is Natasha. I am currently in my last year of high school. I was diagnosed with Juvenile Idiopathic Arthritis at the age of 13. My family and I were devastated. However, I must say that I have grown in so many ways since my diagnosis. I have developed a lot of resilience and also learned to advocate for myself and others. I joined a support group called Cassie and Friends and became the Toronto Chapter Leader to inspire children who are in similar situations as me. I am involved in multiple research studies and I aspire to go into the medical field. When I was initially diagnosed, I found it challenging to find support groups, so my friend Trish and I started this podcast to make sure that no one else with an autoimmune condition has to go through this tough journey alone.
Trish: Hi everyone! My name is Trish and I am 20 years old. I am currently in my third year of university, studying commerce. I aspire to be able to empower women in any way that I can as I graduate from university and am forced to grow up. I was diagnosed with Juvenile idiopathic arthritis at the age of 11 and it changed my life. I will always say that it changed my life for the better and that it takes a special kind of resilience to be able to fight through this disease and let it empower you rather than bring you down. Going through this journey was very tough alone but as I started building a community and raising awareness, I realized that I wasn’t alone in my fight and I never will be.
What drove both of you to create this podcast?
Trish: What drove me to create this podcast was the lack of youth voices in the arthritis community. This destroyed me as a child because there were always adults telling me what to do, telling me what my journey should look like. If I hadn’t met kids my age in my teenage years, I would never be as open about my disease as I am now. I want to pay it forward because this could be what kids need to not feel alone with this disease. I know it’s something that I needed and didn’t have.
Natasha: I always felt alone. I learned and realized that as hard as it can be - I have to advocate for myself. When I found a support group, I instantly connected with individuals who mirrored my journey. I wanted to help children and youth by creating awareness about chronic illness, and making it more accessible for youth looking to find support and resources.
In the first episode of your podcast, you talk about self-advocacy, especially around school accommodations. If you could change the accommodation process at your institution, how would you do so?
Natasha: I have personally struggled trying to explain to teachers and peers that I have swollen fingers and wrists that limit me from using my hands for writing. My experience has not been very pleasant. Since my condition is an invisible disability, I have faced ignorant and unkind comments and assumptions. I started to advocate for myself when I realized that if I didn’t speak up then I would never be able to survive. Although I had an Individual Education Plan (IEP), I still had to explain myself constantly. I would like for teachers to be educated about disabilities and realize that all diseases are not visible. It is necessary for teachers to go through training on different teaching methods and educate them on different accommodations. Everyone is not the same, and it is completely okay for everyone to learn differently.
Trish: There’s often an expectation for students with disabilities and/or chronic illness to reach out for support and accommodations themselves. Universities should create a standard across the board as well as communicate with high school students with Individual Education Plans (IEP). It shouldn’t have to be the student’s responsibility to ensure that their academic career is accessible to them.
How has ableism impacted your mindset, relationships, academic career, etc.?
Trish: This question is a tough one but ableism impacted my mindset because I always felt the need to prove myself whether it be in school, sports or just everyday things. It took me a long time to learn that my body doesn’t work like everyone else. I can’t work out like everyone else, I may not be able to do everyday tasks. My recovery time will always be longer, and accommodations aren’t always normalized or seen as acceptable. I feel like society pushes a “typical” lifestyle on everyone and when you feel even the slightest bit different, you stick out and feel as though you need to stop and change yourself. Even now, it’s hard for me to admit that I am in pain and that I may need more help doing things and I think ableism has a lot to do with that.
Natasha: I was a child; I used to cry, get upset and think ‘why me’ when students made fun of my inability to participate in gym class, or my fish looking orthopedic shoes. I was told that I was just lazy. Some of my science and math teachers thought I was making excuses because I was unable to draw diagrams, write out long equations and do the regular writing tests for 2 hours. I often wondered how they could not believe me or not see that my fingers were swollen. There were days that I couldn't go to school because I was in pain and there were some days that I didn't want to go to school because I felt defeated. Initially my parents came to school often to speak to the teachers and administration to accommodate me. However, I slowly started to speak for myself, building up the courage and confidence to ask for help and advocate for myself. My special education teacher was the kindest human being I ever met. She motivated me to believe and to achieve. However, she was the exception, not the norm, which absolutely should not have been the case. In our society we fit things for everyone rather than the individual. Just because you are different, it doesn’t mean that you can’t succeed.
In a year, where do you see your podcast?
Natasha: I want our podcast to grow to the point where people don’t have to endlessly search for support. I’d like our podcast to be given as a support resource right off the bat by doctors and other medical support. I hope that we can create an accessible source for people who are looking to be part of an inclusive community.
Trish: In a year, I see us making a name for ourselves in this community. Inspiring people to be open and honest about this disease and helping youth make their way through it regardless of what the adults in their lives are saying. I want to feel like we’re actually taking the time to make a difference in the lives of young people.
Often, conversations around chronic illness and disability can center pain and grief. Although these are incredibly important aspects of your experiences, I want to acknowledge that there are also many aspects of joy and love in your lives. What brings you joy?
Trish: I think what brings me joy is things like this. Advocating brings me so much joy, I am able to really advocate for myself and others. It brings me a sense of peace knowing that I am able to change the world with my voice. You know, 100 people following you may not be that much, but a 100 is still a 100. Little milestones in life bring me so much joy knowing that I have fought through a disease that could have changed my life negatively.
Natasha: When you’re first diagnosed it can be really upsetting and hard to get accommodations. I have felt frustrated when medication doesn’t work. I am happy when I listen to music, sing songs or even just watch Netflix. I know that a lot of people with chronic diseases don’t feel like they have the capacity to socialize, but I personally feel recharged when I spend time with my friends.
For readers with chronic illnesses or JIA, what advice would you give them?
Trish: Don’t forget that this disease makes you stronger and more resilient. This disease does not own you, you own it. Use it to better yourself and the world.
Natasha: You may think the world is ending. But remember, you are not alone, even when you think you are. Stay positive, although it is a long never-ending tough journey, you learn to make the best of it.