While our Instagram page is knowing for sharing incredible stories from individuals living with disabilities, we can only share so much. Here, we hope to expand, elaborate and share even more! Let's start with getting to know Tru Faces Ambassador Jenna! Jenna has lived with disability her whole life including mental illness, chronic illness, physical health challenges and anorexia nervosa.
"As a toddler, my hands were often swollen, I fell lots when I was walking and I had a super high pain tolerance which was very different from my peers. My mom always mentioned her worries to my family doctor but they often went unnoticed. I was told I had growing pains, I was just clumsy, I wasn’t active enough or I was just a very tough child. When I entered school my first year I was sick a lot more then average students my age. It seemed as if I had no immunity. My doctors simply said I’d outgrow it. As I got older through elementary school unfortunately none of my symptoms faded. In grade 6 I got very ill my body broke out in yucky rashes, had severe pain and felt the worst I had ever felt. My mom took me in to the children’s ER where I was quickly seen by a physician. The ER team told me I had a nasty flu and I had to go home and take it easy. I went home, drank my fluids and followed the doctor’s orders closely. Sadly my symptoms, pain and rashes only got worse. My mom had to take me back into the ER a number of times.
Finally after lots of pushing and prodding and being brushed off I was referred to the children’s rheumatology team upstairs in the hospital. The rheumatologist was fast acting and took my state very seriously. I had to get loads of physical exams, X-rays and blood work. I was tested for everything under the sun. It was for sure a scary time in mine and my family’s life. I was very nervous and overwhelmed as I couldn’t comprehend what was going on. After some time I went back into rheumatology and was diagnosed with juvenile enthetis related arthritis.
Initially, I felt very alone and scared. Next came trials on many different drugs & treatment plans and it’s been a long tiring journey. I’m lucky now that they seem to have found the right cocktail of meds, but remission is likely impossible for me. I have hope though!
As a child I dealt with a lot of abnormal stomach issues. I learned I was lactose intolerant at 14 and giving up dairy helped a ton but sadly didn’t fully cure me from my belly aches and pains. When I was 12 I was diagnosed with IBS-C. Unfortunately no drug or treatment has truly helped me manage this yet but I do my best each day to not allow my IBS to stop me from living my best life! At age 13, I started to develop some awful back pain. I talked to my rheumatologist about it and she suggested outpatient physiotherapy. I went to a local physio clinic for a year. The physio team was so kind and awesome but sadly physiotherapy didn’t help my pain at all. After giving physio a faithful go my rheumatologist decided to look into more things. I ended up getting a pressure point test and found out I have juvenile fibromyalgia. My official diagnosis happened a couple months before I turned 15. My fibromyalgia made a lot of sense because I deal with almost all of the symptoms from time to time. It’s sad that fibromyalgia hasn’t been studied much yet so we know very little. There’s no true treatments available yet which can be very hard. I push myself very hard and work hard to not allow any of my illnesses to hold me back from living life! My last challenge is math.
All through school I had a tricky time learning math and numbers. Sometimes it’d cause tears. In grade 11 one of my teaches really noticed me having a difficult time in math class. She recommended I go get tested right away. Luckily I was able to get into a psychologists office not long after to get my evaluation. The tests were very long and tiring but so worth it cause now I better understand myself and how I can help myself do better in life and learn better. I was formally diagnosed with dyscalculia. I’m very grateful for my schools, teachers and advisors who’ve been so kind, patient and helpful.
My story is long and bumpy but I feel like it has helped me see the world in a different light. I’m not judgmental of anybody. Being disabled has helped me learn so much about myself and society. I’m a firm believer everything happens for a reason. I’m understanding and open minded. I’ve had the great opportunity to become a disability and mental health advocate and I’m still working hard to make change in the world. Despite my illnesses I’m a proud high school graduate, college student, amazing home cook, great friend, gamer, adventure seeker and a hobbyist make up artist!"
To share your story, email us at tru.faces.connect@gmail.com or learn more about us at www.trufaces.ca