Opinion: It's Time for the Pain Community to Organize!
By Paul Gileno, Founder and President - U.S. Pain Foundation
Recent reaction to articles pertaining to the new CDC Guidelines, the implementation of the National Pain Strategy (NPS) and the current coverage in the presidential campaign have me somewhat disheartened. While pleased to hear the voices of countless pain warriors sharing personal experiences, I am discouraged by the echoing sentiment: those living with pain are wildly misunderstood with inadequate care.
This is unacceptable. To manifest the change we need, it is going to take us all coming together. I am here to simply state that, who you are - your journey, your story and your life - matter.
I am proud to be the founder and president of U.S. Pain Foundation (the largest patient-advocacy organization in America). I am first and foremost a person with pain. I take pride in the fact that I am a pain warrior. The journey to acceptance was not easy for me, just like many of you who are struggling today.
I saw the need for an organization that focused on the patient perspective. What started as a way for me to connect with other pain warriors ended up being the missing link the pain community had been searching to find for so long.
Through the INvisible Project, Take Control of your Pain workshops, advocacy summits, ambassador and volunteer programs and an online support community called Heroes of Healing (to name a few!), we strive to connect the pain community so each person with pain feels supported, validated and recognized.
I understand the feeling like no one cares or is listening. I am dismayed that so many roadblocks exist for people with pain. First and foremost is the lack of validation for those suffering. Society minimizes the hardships while marginalizing the pain of that which they do not understand or cannot see.
To make the situation even more horrifying, is the majority of patients do not have access to the appropriate treatments. It is a disgrace to know medical professionals are forced to decide to follow the oath they took to do what is best for their patients, or follow guidelines provided to them by the government due to fear of losing their medical license. Furthermore, these same clinicians' hands are tied because other treatments that hold much potential to bringing relief - such as integrative and complementary therapies - are not covered or paid for by health insurance companies. It's a sad day for the American people when our own medical system will not do what is right for patients.
However, lashing out against rhetoric is not going to solve this tsunami of a problem. The community needs a solid, strong, unified voice. A message that is honest and real. A call to action that is needed and obtainable. Those with pain, those caring for people with pain, those invested in pain care, must ALL rally together in unison to create the change we need. It is our time to channel a collective energy toward a productive outcome.
For starters, we need to see our worth. As a community of people living with pain, we must recognize that our lives matter. Becoming empowered is key. It is only then that we can properly advocate for our fellow pain warriors and ourselves. In turn, we invoke a positive, productive conversation about chronic pain filled with compassion, knowledge and courage that commands national attention.
What can we do?
Perhaps a White House petition asking that part of the $1-billion granted toward the opioid epidemic is utilized to help the chronic pain pandemic in America. Or how about educating the public about the difference between a person who seeks relief from pain and the person who is abusing medication or is dealing with the disease of addiction.
Write to your lawmakers and tell them how your life is impacted due to pain. Each of us deserves to be treated for his or her pain individually, following the best course of treatment deemed by a medical provider. People with pain must have access to all therapies and treatments, and our government should not only support that but also mandate that such action occurs.
It is time to turn this frustration we feel into action. Will you join U.S. Pain Foundation in advocating for further pain research, access to all forms of care (including integrative and complementary therapies), and legislation that fulfills the needs of people with pain and help the general public and healthcare professionals better understand chronic pain?
This is our moment to stand as one, to be unified and to make the change we need, the change we desire and the change that is right.