The following is a submission to Patients Rising on the role of personal engagement.
Personal engagement in the community of patients, caregivers and advocates has transformed my life with a chronic illness by opening the door to endless opportunities for friendship, networking, and advocacy through organizations like the American Chronic Pain Association (#theACPA) and Patients Rising (#thePatientsRisingFam).
When the United States Air Force medically retired me for intractable chronic pain, I felt alone, isolated, uninformed, afraid, rejected, and useless. The military tribunal told me I would never be able to do anything for the rest of my life.
Upon my forced retirement, my wife and I found ourselves without support, directionless, with no hope for the present or the future. I was then able to attend a pain management course (30 days of in-hospital treatment and therapy) where I learned of the American Chronic Pain Association (ACPA), established by Penney Cowan, and its peer-led support groups.
From the initial contact with the ACPA, I knew I had hit the “motherlode!” The members of the group were just like me! I did not feel judged as inferior because of the pain. I had not known that others were fighting the same problems I fought. I was not alone in my struggle! I now had friends who fought similar battles every day to live a life of quality! Other people were willing to share experiences and resources to help me. I learned how to deal with my anxiety and fear. I gained confidence in my ability to deal with the world and to advocate for everyone suffering chronic diseases.
Joining this community was just the start of my “new life” as a patient advocate. Soon I became a peer-led support group facilitator. I have now facilitated six different peer-led support groups (face-to-face meetings, telephone meetings and Zoom meetings) for over twenty-six years. I have been able to reach out to others through conventions, Zoom calls and panels, telephone contact, interviews, and article submissions. I have found a connection with caregivers and advocates across the world. I have been able to represent people with chronic disease through organizations like the Alliance to Advance Comprehensive Integrative Pain Management, the American Psychological Association, and the World Patients Alliance.
With the guidance from Patients Rising, I have helped make the voice of sufferers of chronic illness heard at the state and national policy level. I am a patient representative in the rating of requests for research funding through the Congressionally Directed Medical Research Program. For the past five years, I have worked on the development of guidelines for treatment for musculoskeletal pain and provided guidance of clinical trials research through Patient-Centered Outcomes Research Institute. I will soon testify in front of a California state legislative committee.
Now I am looking forward to working at the national level to help guide policy with the family of Patients Rising. Not too bad for someone who “would never be able to do anything!” However, none of this would have been possible without my being part of this community.
These opportunities are there for everyone who is part of this community. Being engaged in this community of patients, caregivers and advocates has re-opened the world for me and enabled me to reach out and empower others on their journeys dealing with chronic illness. I now know that I am not alone in dealing with my situation. This association has provided me with contacts and sources of information and research and has been effective in improving both the quality and productivity of my life, as well as it does for others.
This community of patients, caregivers and advocates has become a family for me that does not judge, supports, and encourages everyone who deals with chronic illness. All of us dealing with chronic illnesses need the support and opportunities provided in a family of patients, caregivers, and advocates.
What roles do patient engagement and patient empowerment play in your life with chronic pain?