By Ed Coghlan
Terri Lewis, PhD is another chronic pain advocate that is working to make a difference for people like her son, who suffers from chronic pain. The National Pain Report asked her for a few moments to share what makes her do this work.
What is the basis for your advocacy work–take a moment to briefly explain?
I am the oldest daughter of a parents with disabilities. My mother developed adult onset schizophrenia early in her twenties which eventually led to hospitalization – primarily because nobody understood how to manage this disease. My father had a back surgery due to a lumbar spine defect that bounced him out of the army as a young soldier and contributed to a lifetime of chronic debilitating pain. I am convinced this is the result of undetected connective tissue disorders and that it contributed to his premature death.
Multiple relatives expressed various degrees of ‘oddities’ throughout my lifetime which of course, were always kind of ‘predictive’ of my future. But many hands in my community supported me and my siblings, and somehow – here we are. To this day, my siblings and cousins reflect regularly on the impact of poverty and disability in framing the people we have become.
Until I was in my late twenties I waited for the ‘shoe to drop.’ And when it didn’t, I began to look at my own life differently and the role that disability played in framing my own personal outlook, values and culture. I’m relatively ‘normal’ and unimpeded by anything but my own history – I have an obligation to my family and community to use the tools that I have been blessed with. I’ve been fortunate enough to experience several roles in this process – daughter, care partner, parent, practitioner, navigator, friend.
Certainly my ‘schoolhouse’ has provided a rich experience that sensitized me to the fact that disability is a lifespan issue and that none of us are exempt from its influence. My own son inherited my Dad’s back, which produced profound problems in his teens that persist even today and will follow him for the balance of his life. He has been and will continue to be profoundly affected in so many ways. I have experienced this as his parent, as a professional, and observed how he has been limited by the expectations of community for his development and success. It has shaped his own view of who he is. Policy that rations access and resources have unnecessarily delimited his opportunities primarily because of flawed cultural beliefs about disability and pain care. It makes me angry because I know we can do so much better.
It’s not so much what happens to us as how we react to what happens to us. And much of how we react to our personal challenges depends on how the community reacts to us – whether it embraces our differences or stigmatizes, marginalizes, and withholds resources from individuals because of their limitations. It’s really all about expectations and assumption of roles. We are tribal and group oriented. Disability can lead to exclusion and that is a deadly force.
If I had had a different formative experience or been born into a different family, my perspective would likely be different. But I didn’t, so it’s not. I have a profound sense of social justice around the issue of participation. Chronic pain excludes people from participating in their daily lives.
Why did you feel you had to get involved in the way you have?
How can I not? I am first a member of a community of families. And communities need ALL of their members to contribute. Exclusion prevents communities from benefiting from the talents, capabilities, and potential contributions of all of its members. When we narrow the roles, we reduce the strength and diversity of the community and ultimately that harms all of us. And it weakens our family systems, creates greater costs, and so forth.
Why do you think the pain advocacy efforts are so fractured?
Invisible disabilities are poorly understood and bound up in cultural mythology – it goes to expectations for assigned responsibility. If we ask the wrong questions and respond to the wrong problems, we make systems more complex and less able to respond – all of the energy goes to preserving the system and is moved away from serving members of the community. We are seeing this now with pain care and health care in general.
Generally, specialization is not good for the practice of health care. As the medical community has become more complex it has not become more efficient or better able to deliver services to the community. Specialization leads to professionals seeking out people with shared characteristics and values –tribes are formed. But when we lose contact with people who are not like us we lose important learning. It leads to ‘preserving the tribe at the expense of the reservation.’
Efforts are fractured because this process has rationed resources to protect the tribes rather than the delivery of care. We’re measuring healthcare impact by the number of buildings, or practices and specialties rather than community outcomes. Human beings have become commodities – bodies that generate revenue as billing codes. Does this lead to healthier communities? Clearly not. Is the quality of life improved by the number of available specialized practitioners? There is no evidence to suggest that this is true. Is the quality of life improving? Access is reducing, injuries are increasing, and we’re losing the middle class – in part because lack of access to effective health care is so central to the ability of the economy to thrive.
We simply have to put our resources into working at this issue from the bottom up instead of the top down.
Other than the CDC Guideline (which you have argued punishes pain patients), what is the most important issue that faces the pain community?
Disability is a lifespan issue. We don’t need to be afraid of it. None of us will get off the planet alive and along the way, we will be touched by this issue through adaptation to one or more roles as we age. To some degree, we can plan for it. Variability strengthens the community because it increases resilience and adaptability. So it is important that we begin to frame this issue properly and design our communities to embrace and accommodate it. Barrier removal begins with re-imagining this issue based on who we are as a population today.
We can measure our failure to respond to this through workforce losses, and disruption to r community, family, and individual roles. I view it like entropy – the more specialization there is the faster and bigger this negative impact will become.
We have to face this issue. As practitioners, as advocates, as family members we have to get involved at the ground level. All solutions are local. The federal government is not going to solve this for us. It can’t because it is not equipped to do so, and that’s not its’ job.
What advice would you give other loved ones of those living in chronic pain?
Trust your instincts. Attack shame wherever you find it. Get out of your own way. Breathe. Be brave. Educate yourselves about your roles, rights, and responsibilities. Forgive yourselves. Reset your expectations. Teach the people you love to take control early in their lives. Choose the outcomes you will be responsible for. Hold others accountable. Don’t isolate yourself. Look for that community even when your own community has failed you because of a lack of understandings. There are others out there just like you – find them. Look for those who are different from you – they will teach you and make you more resilient and adaptable. They need you as badly as you need them. Keep your eyes focused on the road ahead. Articulate the supports you need. Be forceful and assertive but speak so people can listen and hear you. Fire those who get in your way. Laugh at yourself and others. Don’t take yourself too seriously. Be patient with your limitations. Don’t take any crap and don’t let people like me make you feel guilty.
We will all be you if we live long enough.
They can kill you – they’re not likely to eat you unless you let them.