Pain is a lonely, frightening place; especially relentless pain that weaves in and out of your adult life. At the age of 16, I started experiencing stiffness and pain in my hands that would come and go. The discomfort was confusing but not significant. Three years later, I was homebound and unable to lift a glass of water to my mouth, brush my hair without using two hands, or do something as simple as sit down without stacking pillows to avoid bending my knees. I had a bald spot on the top of my head, weighed less than 100 pounds and was constantly fatigued. Rheumatoid arthritis (RA) is an inflammatory disease affecting multiple joints in the body resulting in pain, stiffness, and often, destruction of the joints. In addition, the internal organs and systems can be affected. RA had brutally invaded my life.
The pain was constant and unbearable. Medications were limited and nothing seemed to stop the destruction and intense pain. I wanted to die and be in heaven. Alone each night, I would cry and plea that, by morning, I would be in heaven where pain and suffering did not exist. But I would wake up each day still trapped here on earth unable to hold back the tears; somehow I had to find the courage to get out of bed. Years passed, many losses were endured; pain and sorrow stalked my life. But there were moments of joy and success. I had access to high quality medical care, Vocational Rehabilitation intervened, the Arthritis Foundation provided resources and support, and my friends and family lifted me up.
In the decades since then, I have taken quite a ride from that lonely, painful bedroom in Birmingham to completing a Ph.D. in Health Education and Promotion at the University of Alabama at Birmingham, to Atlanta where I served as the Vice President of the American Juvenile Arthritis Organization, and to Maryland where I worked at the National Institutes of Health (NIH). There, as the Director of the Office of Communication for the National Institute of Arthritis and Musculoskeletal and Skin Diseases (a component of the NIH with the Department of Health and Human Services), I was surrounded by some of the brightest scientists in the world dedicated to increasing our understanding of disease and improving the quality of life of people in pain and suffering.
I have never thought of myself as a particularly smart person; I can’t spell and my pronunciation of some words is quite comical, and yet I found myself at the nation’s premier research environment as the communications director. Because none of that is important — what is important is that you follow your dream, remain tenacious, balance rest with activity, eat well-balanced meals, see your doctor regularly, reach out to friends, nourish your mind and spirit, and never give up.
Serenity!Now is an outreach organization for those in pain from chronic diseases providing resources and support to enhance their functional, physical, relational, and spiritual capabilities setting them on a path to a better quality of life.
Please join us on Twitter at #AustinJanet for messages of encouragement and joy. Or visit our Web site to follow our blog at drjanetaustin.org. Be of good cheer.
Janet Austin, Ph.D.