Cynthia Coney, MEd, CAPP, was the keynote speaker, and spoke as a patient living with lupus, at ACR’s ARHP Keynote Address: Happiness from the Inside Out. Coney is a nationally recognized speaker, trainer, and author. She holds a Master’s Degree in Educational Leadership and is a Master Trainer for the Centers for Disease Control and Prevention (CDC) and The Center for Prevention Workforce Development. Her publications include: Earned Income: A Critical Resource for Sustainable Nonprofit Health Organizations, Intellectual Property for Nonprofit Organizations, and The Wild Woman’s Guide to Living with Chronic Illness.
As a patient who’s been diagnosed with lupus in 1980, she shared her experience as a patient receiving care and support for more than 30 years. She had one advice to offer health professionals, that is: offer empathy, not sympathy.
She told the ACR Daily News that “There is nothing harder for me than someone looking at me with really sad eyes, because I feel like a victim. I love empathy. I love someone being able to say, ‘I understand.’ And in your roles it’s okay. I’ve had people like you put their hand on my shoulder and say, ‘Cindy, it’s okay to be afraid, but we’re here for you.’ It’s okay to acknowledge that fear, to listen with your heart and to remind us that we are lovable even when we feel unlovable.”
Before she was diagnosed, Coney was running nine-mile road races on the weekends. She lived one year with recurring fever, fatigue and joint pain before her doctor told her she has systemic lupus erythematosus. After her diagnosis, Coney was barely able to walk a couple of steps to pick up her mail from the mailbox. She had to revisit her life plans with the diagnosis of an illness with a life expectancy of five years.
She fought back and tackled life with resiliency, which in her words mean: Learning to unleash your unsinkable spirit and embrace Plan B – a new life with lupus. She declared to herself: “Cindy has lupus, lupus does not have Cindy.”
According to Coney, “The gap between Plan A and Plan B is the hardest time because. You can’t do what you could do before, but you’re not quite sure what you can do. It’s this trial and error time of trying to figure out a life that is worth living.” She identified the following as important factors that assisted her as a patient trying to achieve a new ‘normal’: social interactions, problem solving, autonomy, and purpose. Tackle life with creativity and optimism to find a new direction and meaning in life.
It is also important to counteract unwarranted worry and fear. Learn to understand that there are certain problems we have no control over. Also, learn to live in the moment and experience the joy of today to reduce stress. In her interview with ACR’S Daily News, she said: “When my mind starts to worry about something I tell myself, ‘not helpful, not helpful Cindy,’ and reframe and change that self-talk. If it’s something that I have control over then it’s time to take action. If it’s not something you have control over, let it go.”
In her address to health professionals, she emphasized the importance of avoiding stress and burnout. After all, you can’t give what you don’t have. “When you’re stressed and when you’re burned out, it is very, very challenging to give to others,” Coney concluded.