Too many friends and family members are dealing with serious medical issues these days. In their honor and on the 14th anniversary of dealing with my own, I am sharing some lessons learned from my perspective as a patient. These tips are brief excerpts from my Health Literacy from A to Z book in the chapter, “Communicating When Patients Feel Scared, Sick, and Overwhelmed” and an On Call column I wrote in 2006, “Communicating when Naked: My Perspective as a Patient.
Talking about health and other medical matters had always been easy for me. As an occupational therapist and health literacy consultant, I felt confident and in charge of conversations no matter which professional “hat” I was wearing. But after a routine mammogram turned out not to be so routine, I felt more than hatless. I felt naked. Now I had to communicate not as a provider or consultant, but as a patient. I was often so flooded with emotion that I had trouble thinking and remembering. Eventually conversations got easier and I learned what I needed to know and do. I learned something else, too. Health literacy truly matters—to all of us who are, or ever will be, on either side of health conversations. Here are some tips and lessons learned:
- Invite family members or friends to act as advocates. It can be extra hard to advocate for yourself when feeling vulnerable, scared, overwhelmed, or ill. If you anticipate that conversations might be difficult, consider inviting a family member or friend to help by taking notes, voicing concerns, and later remembering what was said in the appointment.
- Overcome communication barriers. If you use hearing aids or eyeglasses, bring them to your appointments. Tell your provider if he or she is speaking too softly, if the print size in written materials is too small to read, or if there are words, concepts, and numbers you do not fully understand.
- Learn only as much as you want to know. What surprised me the most was that, for at least a while, I did not want a lot of outside information from websites, books, articles, or well-meaning friends. The educational materials from providers was sufficient, at least at first. I’ve come to appreciate that there is no right or wrong amount of information. My advice to patients is to learn only as much as you want to know now. Later, you can always find out more.
- Create your own medical record. Just as health providers keep records about our diagnoses, treatments, and test results, patients should do the same. There are many ways to do so including on paper or with techno-tools. Mine is a simple three-ring binder. I put a zippered pouch in this binder to use as a catch-all for identification and business cards, appointment slips, and a pen for taking notes. I have several tabbed sections in the binder, including:
- Tests, test results, and medical instructions
- Print-outs of patient education materials
- Medication lists, healthcare proxy, and other important papers
- Questions to ask, with space to write the answers
- Extra pages for notes or whatever else I want to remember
Happily, I am feeling fine and doing well. But these lessons learned will last a lifetime. Please share them with your colleagues, friends, family, and anyone else who cares about clearly communicating illness, wellness, and health information.