I recognize that not all patients are like me. I can challenge a doctor and push when I know something is wrong with me without feeling intimidated. I can speak up when I know that the situation doesn’t feel right. We should all be our own best advocate. We must be. In the end, no one can speak for us individually or help us or fight for our interests like we can. We know what it’s like to live with these diseases day in and day out.
Each of us has certain gifts. Mine is the gift of gab. I can talk to all kinds of people and love doing it. I love to hear stories, ask questions and learn as much as possible about others. I am also analytical, organized, logical and intuitive. A doctor tells me something and I ask a million questions.
Being able to understand my conditions, what to expect from them, and how to handle life have been what’s helped me stay sane ever since I first received a rheumatoid arthritis diagnosis.
Not knowing how I would feel from day-to-day, experiencing pain 24/7, getting diagnosed with one disease after another, and feeling my body was out of control—all these things have increased my drive to understand and know even more. These traits give me an advantage and a certain responsibility.
I must speak out for those who cannot do it themselves.
I am empathetic to others’ struggles. I have a way with words, so I am driven to be an advocate. I am driven to speak for those who cannot voice their pain. I am driven to take up the mantle for those who struggle just to get through the day. I am driven to be honest and to push.
As patients, there are so many more things that we need for a better quality of life and I want to be a part of that voice screaming to be let in from the other side of the door– as patients we must be heard!
I believe that ArthritisPower is an important part of that struggle.
I was ecstatic when I first learned that CreakyJoints was building a patient research network. I am a data person and numbers speak to me. Telling me that lots of people with RA struggle with depression is one thing, but saying that 39% of patients report that struggle with it sings in my ears and brings the reality home.
When the beta version was first released, I was one of the first to sign up for ArthritisPower. In my head I could see a research lab and numbers flying across a computer screen that told a scientist how to better help us. I could see those numbers helping us discover new treatment options, things to avoid with medications, and even giving us a voice in how we want to be treated and what good healthcare looks like to us. Every time I thought about it I smiled. I couldn’t help it.
Several years later I learned about the role of Patient Governor. It was as if the heavens opened up and the sky began to sing – just like a Disney movie! I learned from Seth Ginsberg, CreakyJoints Co-founder and President, what the role was all about – patients having a voice and driving the research based on the data collected through the app. I couldn’t believe my ears. Thousands of patients had signed up and the database was beginning to build beautifully. There was a current Patient Governor team, but several people were going to be moving on from the role so there were openings.
Seth connected me with Dr. Ben Nowell, Director of Patient-Centered Research for the Global Healthy Living Foundation, CreakyJoints, and I got the application. I had to submit my current resume and fill out a questionnaire about why I wanted this role. The next step was a phone interview and then I had to wait for a month to find out if I had made it. I found out I got the role and was just beside myself with pride. It was a very rigorous process just like getting a full-time job. But once I got the position the real work began. We had to go through training, monthly meetings, and attended the ArthritisPower Patient Governors’ Summit to meet one another and discuss research.
The conference was fantastic. There were so many intelligent people with diverse experiences in research and living with their arthritis or related conditions. We had doctors presenting theories and research proposals to us for our feedback. We got to freely express our minds, ask as many questions as we wanted and discuss the current state of healthcare. I was totally geeking out.
This is what healthcare should be.
Our voices should be loud in the room. Our thoughts and ideas should be sought after. We shouldn’t be a list of symptoms or an attempt to quell an ongoing disease with minimal effort and no real connection or care. We pay the salaries of all these doctors with our issues and our chronic conditions. What we say should matter.
This is why I am proud to say I am a patient advocate and an ArthritisPower Patient Governor. I can give voice to the patient perspective, ask questions and probe for answers. I do it for myself, but I also do it for other patients out there who can’t do it for themselves.
Created by CreakyJoints in collaboration with the University of Alabama at Birmingham, and the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions.
The free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while simultaneously participating in research via informed consent. ArthritisPower Patient Governors serve as gatekeepers for researchers seeking to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit www.ArthritisPower.org.