Cynthia captured our attention with her insightful post on our Facebook page: “After several years of disease, I eventually found doctors who treat me like I am a member of my medical team. I listen to their advice (i.e., not orders), share my concerns and ultimately make the decisions. They know the science, but I know my body, and our combined expertise has led to my improved health.” Here’s what else Cynthia has to say:
IGL: What is your diagnosis?
Cynthia: Scleroderma, myositis, and rheumatoid arthritis - the trifecta, as I call it. Most of my symptoms have been musculoskeletal rather than internal. Although some of my symptoms are in remission, I have persisting physical disability. My hands are severely impaired.
IGL: How did you learn to become your own healthcare advocate?
Cynthia: I learned to become my own advocate because there were different approaches to treating my conditions. I was interested in complementary medicine. I wanted an integrated approach, and I found that traditional doctors were either not fully informed about or disagreed with complementary approaches, and the opposite was true as well. I did a lot of research, listened to my doctors, asked numerous questions and made decisions in my best interest. Ultimately, this included traditional and complementary medicine, along with diet and lifestyle changes and physical therapy. I paid attention to how my body responded to various treatments and provided this feedback to my doctors.
IGL: How do you keep your illness from defining who you are or what you can accomplish?
Cynthia: I still allow myself to dream. When I had to let go of former dreams, I dreamed new ones. I have hopes for my family, dreams for my daughter, aspirations for myself and a vision for the world. Dreams have an amazing capacity to override physical characteristics of race, gender, heritage, economic status, age, diagnosis or ability. Both dreams and limitations originate in the mind, and one can choose to believe and live based on one or the other.
IGL: What have you learned about yourself since your diagnosis?
Cynthia: I have learned to accept myself for who I am. I believe that people tend to pick up on self-acceptance and follow suit. I have learned to focus. To the extent that I have limited energy, I realize the importance of focusing on what is most important. I have learned that I am much tougher than I once thought. I have learned that spirit, mind and body, are much more connected than I once thought. Listening to my body, reducing stress, meditating, resting, playing with my daughter, going on a date with my husband, eating a healthy diet, spending time with friends, praying and having faith are all important components of physical, emotional and spiritual health. They interact to create a whole, balanced life.
IGL: If time, money and health were no obstacle, what would you do or become?
Cynthia: I would complete a graduate creative writing program and pursue my dream of being a published poet and nonfiction writer. I would teach at a university. I would become an advocate for people with disabilities. I would travel more in the U.S. and abroad. I would dance more, play basketball, learn to surf ... shall I continue? OK, so except for the basketball and surfing, I will definitely pursue these dreams and goals anyway.
IGL: What advice do you have for others?
Cynthia: I would say “do not despair.” Receiving a diagnosis is a “loss,” and one has to grieve that loss of health. However, at a certain point, you will need to rise above the grief, put on the boxing gloves and get ready for the fight of your life. Equip yourself with everything you need medically, spiritually and emotionally to overcome this challenge. You are worth it. Your family is worth it. Surround yourself with people who believe in you, including medical personnel. And remember, no matter what, there is always a reason to hope.