Rowe Jones considers himself a "professional patient.” At the age of 17, he began to have stomach pain, originally diagnosed by his hometown doctor as just a simple "nervous stomach.” After that, he began developing face and neck pain. Over the years, his pain became chronic, and Jones visited countless physicians and specialists to get a diagnosis for his symptoms.
In 2003, his condition worsened. His pain dramatically increased, his appetite dwindled and Jones lost 60 pounds. After doing extensive research about his condition, Jones came up with a diagnosis on his own and confronted a doctor friend about it. It wasn’t until 25 years after his initial symptoms began that Jones finally received a diagnosis.
Stricken with a complex neurological disorder, Jones discovered that he had multiple neuralgias – pain in one or more nerves – affecting his head, face, neck and stomach along with several permanent spinal injuries.
Later in 2003, Jones had brain surgery in an attempt to improve his health, but the results of the surgery were not as positive as Jones had hoped. It was shortly after the surgery that Jones decided he wanted to help other people dealing with pain, and the idea for his self-help program, Happy With Pain, was born.
Jones, an, author and prolific voice-over artist, is a featured speaker at the Professional Patient Advocate Institute’s upcoming 2011 Patient Advocate Conference taking place on Dec. 5 in Orlando, Fla. Jones will deliver the luncheon keynote address.
Jones sat down with the Professional Patient Advocate Institute to answer some questions about being both a patient and an advocate.
PPAI: You describe yourself as a "professional patient.” What do you mean by that?
Jones: It was something I didn’t realize I was getting into. I entered professional patienthood at the age of 17 when I was beginning to have some stomach pain. As I got older I still have stomach pain but I started having face pain and neck pain as well. I went to a lot of doctors, from my hometown doctor in Missouri to all kinds of specialists. In my late twenties I began to have more episodes of pain, and then the episodes became closer together until the pain became chronic. Then I began to have throat pain. As a voice-over for a living that was very difficult to deal with. I went to an ear, nose and throat specialist. A professional patient goes through experiences like that. At that point I had to study. I had to not only be a patient but be an empowered patient and do a lot of research. I was a patient who really had to take responsibility for my condition. We can’t just rely on the medical community to have the answers for us.
PPAI: What was most frustrating part about dealing your illness?
Jones: I had a surgery early on that I shouldn’t have had because it didn’t improve my condition. Other than that, I think the most frustrating thing was that healthcare providers have to be a bridge for [patients] and they weren’t in my experience. Doctors would tell me they didn’t know what was wrong with me.
PPAI: Why is it important for patients to be their own advocates?
Jones: Going back to my small town roots, I put my doctor on a pedestal. I grew up with that very naïve notion. I realized that doctors are people just like everyone else and they’re going to make mistakes and they have a limit to their knowledge. You have to pick up where their knowledge leaves off.
PPAI: What advice would you give to other patients and their advocates who are trying to navigate the healthcare system?
Jones: You really have to be responsible; you are responsible for your own pain or condition. For advocates, we need great patients who are proactive. From the patient side, we need advocates to listen to us; we need their compassion and attention.