Almost everyone is familiar with the paper bracelet that hospitals put on people to mark the change in their status to that of a patient. The bracelet identifies the name, age, admitting physician, and often now includes a barcode with additional data that confirms the medical condition, authorized procedures, and medications. As someone who, if I kept them all, would possess enough hospital patient ID bracelets to make into a garland for a Christmas tree of robust circumference, I can’t wait to gnaw, snip, slip, or cut off that bracelet as soon as I leave the view of the discharge nurse.
I realize that others can not so easily shed their patient identity. Their injuries or disabilities, temporary or permanent, continue to identify them instantly to the world as patients, evoking sympathy, empathy, pity, or simply unwanted attention. I’ve never wanted anyone to pity me, make exceptions, or deny me opportunities that I knew I could manage, simply because of perceived limitations. However, as an adult with a long track record of successfully overcoming the physical and emotional challenges of balancing chronic disease with school, work, life, I’ve started to question why I feel the need to escape or hide from the fact that I live with chronic and sometimes acute health conditions.
Three short vignettes from the past few weeks may help explore this evolution in my patient identification:
1. No blood from my hands
I don’t allow anyone to stick my hands with needles to take blood. I’ve had periods of my life that have necessitated repeated blood draws and IV insertions over the course of days, weeks, or even months. Add a few years on prednisone, a dash of dehydration and I have become what’s called in the trade “a hard stick”. Often the usual spot on the inside of my elbow is uncooperative and the tech, nurse, or phlebotomist starts looking at my hands. Recently in the hospital after explaining for the 3rd time that I don’t allow blood to be taken from my hands, I started to cry. The nurse stopped and gave me the opportunity to explain that my hands are the one unviolated spot on my body after years of medical treatments. They were unscarred. Frankly, I have beautiful hands, manicured hands, long fingers made to play the piano or show off fancy rings. When I left the hospital, I could take off the hospital gown, bracelet, put on long sleeves, and appear again as a “normal” person, a healthy person. I got to be in charge of when I revealed my patient status. If my hands were as bruised, bandaged, or scarred as the rest of me there was no hiding, not even from myself.
2. Donna Cryer – Liver Disease
Picking up my name badge at the registration desk at a workshop for patient representatives for the FDA I was a bit taken aback when I saw that it read Donna Cryer/Liver Disease. I understood the purpose of the identification to help us understand and interact with the other patient reps, but in all the hundreds of events I’ve attended, most on healthcare topics, I’ve never been literally labeled by my disease. Of course in this setting, I expected to be disclosing my conditions early and often, but it was no longer my choice in how I presented myself. Contrast with a visit to my doctor’s new office where the staff mistook me for a drug rep. What greater confirmation of polish and perkiness that that! It might have also spoken to the volume of my medical records I was toting that may have been mistaken for a same case, but I digress . . .
3. DCpatient/Donna Cryer
My business manager made me tweet. Let me explain, I am a lawyer, not only by education or training, but by essential temperament. Social media, self-disclosure, does not come naturally to me. In being pushed to blog, I thought, let me start with Twitter, 140 characters of opinion at a time. Also, rather than Tweet as Donna Cryer, JD, I would create an alterego, DCpatient, my patient identity. This blog quickly followed, but still I had this naïve attitude that I could keep these identities, these worlds, separate. How separate they could ever be since I run a healthcare consulting firm focused on advancing patient issues and perspectives? Still, color me surprised the first time someone recognized me as DCPatient while at an evening event with clients. After the E-Patient Conference in Philadelphia, most everyone was using my “real” name and my “patient” name interchangeably. The firewall was broken.
Yesterday, I redrafted my professional bio to include the words “a liver transplant recipient”. There that designation sits next to my Harvard education and Bar association membership. Wearing my patient identification publicly consistently may take more courage that the daily private struggle of living with my conditions.