Healthcare settings can be difficult places for people living with sickle cell disease. People with sickle cell often face discrimination in emergency rooms while dealing with the periodic episodes of extreme pain that bring them there. Christine Harris understands this all too well as someone with first-hand experience and an innovator fighting to make a difference in healthcare outcomes for people with pain disorders.
Diagnosed with sickle cell disease at a young age, Christine was an active and dynamic child, defying the realities of what it might mean to live with sickle cell. “I was doing a lot — track and field, ballet, piano, theatre, choir — on top of school,” she said. “When I entered my early teens, that’s when I started to slow down a little bit and realized I couldn’t do everything that I wanted to do.”
Despite the challenges she has faced, Christine has lived a life rich with diverse accomplishments. After 17 years of working in marketing and communications, driven by her desire to work in health design, she went back to school to earn her Master’s Degree in Design for Health. Today, she works as an Innovation Manager at the Canadian Cancer Society.
“Having sickle cell disease was a large part of my motivation for wanting to make an impact in health,” she says. Christine is using her knowledge and lived experiences to create an intervention to help people like her living with pain disorders communicate more effectively with healthcare professionals.
Understanding and telling patient stories have been central to many of Christine’s past professional experiences. In her previous life as a theatre artist, she told stories about how illness can impact people’s lives. Today, she is using new mediums and pathways to ensure the voices of people living with sickle cell are heard in a world where they often go unheard.
“I have been through experiences which have deeply shaped who I am, and I have really had to strongly advocate for myself in order to get the care that I am deserving of,” says Christine. Although a skilled communicator with the in-depth health knowledge to self-advocate, she has also had to navigate harrowing situations while seeking healthcare where she has been ignored, misled, and neglected by care practitioners.
These difficult experiences formed Christine’s drive to empower those who aren’t as well-equipped to advocate for themselves, particularly in the hospital/emergency room context where healthcare providers do not know them. She stresses the importance of care providers valuing the knowledge, thoughts, and input of people living with sickle cell disease and allowing them to take an active role in their care. “I am an expert in my experience and should be valued and treated as such,” says Christine.
Through her work, Christine hopes to bridge gaps in understanding to contribute to better patient experiences and health outcomes. She is optimistic that there can be a different experience for people living with SCD, but it will take systemic change at every level. For healthcare practitioners, Christine wants to see more education and awareness about sickle cell disease and stresses this should also translate to compassion for the people they are caring for. “It is important to have knowledge about sickle cell disease and to care for people with sickle cell disease just as you would anyone else.”
