Making My Pain Into My Purpose
Written October 2016
Making My Pain Into My Purpose
I founded my Pain Activism & Education initiative to promote dialogues about the social and political dimensions that influence the marginalization, stigmatization, and discrimination of people in pain and people who have chronic “invisible” illnesses and disabilities. My mission is to increase empowerment of people in pain and influence change about how society thinks about pain and people in pain.
My skills, knowledge, and insights gained
Prior to my pain disabilities, I took great pride in my ability to help others, whether practically or through my convictions and actions to influence change. Assumed in my role as a “doer” was that I myself did not require help. Becoming ill, no longer being able to work, and being declared “permanently disabled” in my early 20s was a rude awakening. My experience no longer being “self-sufficient” and becoming dependent on public assistance such as Social Security, food stamps, and HUD section 8 housing woke me up to the pervasive assumptions and prejudices about people with disabilities, illnesses and pain in our society.
I spent most of my 20s sharply focused on “fixing” myself, determined not to be what I saw as an inferior category as a person dependent on others. Until becoming ill, I had always experienced the privilege of successfully attaining jobs and having the physical and emotional resources to accomplish what I wanted. I viewed independence as synonymous with being able to work, being productive, and “functional” by the societal standards I accepted, even though I didn’t question where they were coming from.
I have learned an extraordinary amount weathering this path of living with ongoing pain disabilities; taking the step to establish my Pain Activism & Education initiative has capitalized on this learning and introduced new discoveries about how I work best, including:
My aptitude for and enjoyment of developing concepts and theories and conducting supporting research; I have good instincts about where to go next in my research (though I still have much to learn about research)
Taking a risk/not letting fear of criticism and judgment keep me from putting myself out there
Analysis of biases in the medical establishment, in research practices, and medical ethics when treating—or not treating—pain
The value of community and interdependence: Everyone has something important to contribute
Examining disparities in social services/public assistance and systematic discrimination
Using my passion and commitment as a launch-pad to engage others
The importance of communicating my mission in relatable and inspiring ways; communicating effectively about complex information
Using “rejection” for grants and other support, and/or when people don’t understand, as opportunities for feedback to improve my approach
Being open and willing to be creative and experiment with different angles and approaches
Not becoming overly concerned with others’ opinions to validate the importance of what I’m doing
Patience, knowing the results will not be immediate and that this is a long-term mission
It’s necessary to set expectations with sustainability in mind as part of the whole picture
Believing in myself has proven one of my greatest ways to lead and to gain other’s support
My lessons learned
One of my primary lessons learned is that we don’t know where our experiences are going to take us. I have become more trusting of my intuition and instincts as a result. I have also strengthened my ability to comprehend and consider multiple influences and sides of the situation and how social, political, and other factors inter-play.
Asking for help and understanding what it means to need and receive help has been a huge lesson. I have had to make friends with having different capacities, being more limited and relying on people and government agencies in ways I never previously thought I would have to. Implied in my identity as someone who provided help to those “less fortunate” was an assumption that I was somehow stronger and/or smarter and that I was not subject to the same vulnerabilities. Through my disabilities and living below the poverty line, I recognize how many covert prejudices I used to hold which were unknown even to me. I see the world differently as a result of now being “one of those people” and this increases my compassion toward other people. I see more of the social and political power dynamics that promote inequities for marginalized people. I have also gained an immense appreciation for all there is to be learned from people rejected by the dominant culture, because they have skills and ideas that are not commonly considered.
Questioning my own thinking and conducting socio-political analysis has helped me to question my assumptions and not simply take a position and dig in, which has earned me respect in the committees that I am a part of in my community. Applying my past activism experience advocating for controversial issues has taught me how to be diplomatic and not overly strident while staying true to myself and my positions on an issue. I can see this as being useful in future situations in which I am prioritizing action items and objectives as well as in finding methods to engage my supporters that does not alienates other prospective supporters. For instance, my “target” supporters include medical professionals as well as patients: two groups that can be very critical of one another. It will be essential to evaluate what approaches to use with these different constituencies based on the core goals of the mission, and stay focused on progressing change.
One of my greatest challenges in the past has been pushing myself too hard in my work, physically and emotionally paying the consequences. When I began my Pain Activism & Education initiative in 2015, I was coming out of a major backslide from a couple years before in which I pushed myself beyond my limits. Having just gone through years of rehabbing and adjusting to an increase in my impairments and decrease in what I am able to do without pain, I knew in no uncertain terms how important it is that I not go back to old patterns. This is so much easier said than done! I have made it part of the mission of my activism to find ways to achieve my goals while making the work fit my needs and capacities. I have incorporated this as part of the mission of my activism: to deliberately create an alternative model that prioritizes health and wellbeing over the traditional values of our able-ist, results- driven culture.
The importance and impact
I envision my Pain Activism & Education work making an impact by influencing change and giving people hope. I know that witnessing other people with disabilities reduces my sense of isolation and contributes to my dedication. I aspire to be a model for others and to provide resources that I wish had been available to me. My own quality of life and my interaction with others benefits from the sense of empowerment and agency that I have from pursuing this mission to use my own pain and anguish to make a difference. My thinking about inequality, suffering, and oppression has changed as a result of my own experiences and the research I have done for my Pain Activism & Education initiative. The impact of what I’ve learned extends to my sense of spirituality and faith as well. We are all connected and important!