Shanon McQuitty | Becoming a Patient Partner
Shanon McQuitty’s journey to getting a rheumatoid arthritis (RA) diagnosis wasn’t an easy one. She was diagnosed with bilateral tendonitis for almost 8 years and assumed her chronic pain was related to this. It wasn’t until the summer of 2011 that the pain and curling of her index finger first indicated that something wasn’t right. Her family doctor requested a blood test that confirmed that she had RA.
“I have flat feet, which combined with the tendonitis diagnosis masked my arthritis,” she says. “Because of the delay in my diagnosis, I knew remission wasn’t going to be in my future, I was mad at first and then I just felt deflated.”
Her sister recommended a book written by an arthritis patient that covers the experience during the first year after a diagnosis that was very helpful for her.
“The first year is the most challenging, there are so many uncertainties, the pain is excruciating, and it’s good to be mentally prepared for what is coming,” she explains. “My best friend had lupus from a young age so I had some information from her experience, it is meaningful as you navigate those first stages to learn about other people that went through the same.”
Shanon started a journal to track her symptoms and brought it to the appointments with her rheumatologist. Writing things down was also a great help to set reminders for herself. She found that not being able to rely on her memory was a big shift for her and how she lived her life.
“I have come a long way from that, I now know which medications to take and how they will affect me,” she says, “I know that applying either cold or heat pads on my joints helps me during flares and until my medication kicks in. I know how to manage my symptoms.”
Participating in Arthritis Research
“I thought volunteering would involve stuffing envelopes,” Shanon jokes.
In 2013 when she attended a forum organized by Arthritis Research Canada’s Arthritis Patient Advisory Board (APAB) she was pleasantly surprised by the work they did and decided to sign up to become a member. On the first meeting she went to, Shanon felt intimidated sitting in a room with scientists and wasn’t sure how she could contribute.
Time proved that her perspective as a patient was key to the scientific teams she worked with. Since then, Shanon has participated in many studies and continues to bring valuable contributions to life-changing arthritis research. One that is special to her is the PEIRS research because it focuses on patients’ experiences and creating meaningful ways to facilitate their engagement in research.
“I know the importance of an early diagnosis because I didn’t get one myself,” she explains. “I’m really interested in being part of research about the future of healthcare and advocating for people in remote communities that don’t get the access we get living in a major metropolitan center. This is what I want to bring attention to this Arthritis Awareness Month.”
Sharon is currently a patient partner in the FlexCAre research, led by an Arthritis Research Canada multidisciplinary team this study aims to create a care delivery for patients currently underserved by the healthcare system.
Is arthritis standing in your way? Check out our Arthritis Awareness Month
page here for helpful information to navigate the challenges of this disease.