Recent reaction pertaining to the new CDC Guidelines, the implementation of the National Pain Strategy (NPS) and the current coverage in the presidential campaigns has 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. In fact, the pain community is misrepresented daily with biased and inaccurate statistics by mainstream media and governing officials.

 

This is unacceptable. Yet to manifest the change we need, it is going to take us all coming together. We must harness a message that is clear, concise and powerful. We cannot continue to let the negativity of being stigmatized cloud our ability to join together as one voice. I am here to simply state that who you are -  your journey, your story and your life - matter.

 

I have always said that while 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 fell into a deep depression when forced to sell my businesses. I had identified my worth by my profession as a chef; with that gone, I no longer knew who I was anymore. The pain had also put a huge strain on my already rocky marriage (ending in divorce) and my close relationship with my six siblings and parents (whom I stayed away from and did not speak to for years).

 

Yet it was from this horrible time in my life that I found my true calling.

 

I saw the need for an organization that focused on the patient perspective. It would be patients helping patients through support and community interaction. 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.

 

U.S. Pain Foundation helps individuals find a new, redefined purpose in life. 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.

 

After my personal hardships, I know how important it is for a person with pain to feel heard and understood. I still remember how I used to live  in pain every day; thankfully, I now choose to live  with pain every day.  This is something I want every person who is suffering to recognize - you can live with it, you are not alone and you do matter.

 

It is my unyielding belief that each one of us plays an important role in generating positive change. Too often, we discredit our own ability to contribute to something great. We tell ourselves that we are in too much pain or we do not have anything valuable to offer. We are defeated before we even begin, mainly because of being forgotten and not listened to for far too long.

 

This is a travesty. By disregarding how powerful we are, we are giving away our strongest asset: our power. I know if I was able to find my way through my pain then anyone can do it too. I did nothing special: except I did not let pain win. I reclaimed my life.

 

So how does this tie in to our current landscape?

 

The stories from concerned, legitimate people with pain are missing. Instead, most coverage showcases the defensive patient. I get the angry reaction. I understand feeling like no one cares or is listening. Trust me, I am mad too. 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, 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.   So despite what a medical provider feels is the best course of treatment for his or her patient, they either cannot prescribe or recommend it, or worse, refuse to do so. 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.  In my opinion, 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 $1billion 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. Both people living with addiction and chronic pain are brutally stigmatized and inadequately treated, but both groups of people need different forms of therapy to heal. There is a difference, and that is not being discussed in today's media.

 

We need to stand strong, holding the medical system (clinicians, health insurers, pharmaceutical companies, government) accountable for access to the best care and treatment. For those who have received unethical treatment, file a complaint.  To others who fear changes brought about by the CDC Guidelines or have hope because of the National Pain Strategy, 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. If this is not happening, then that is not right. 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.

 

Complaining to each other is not going to generate positive change. Action will. It is time to turn this frustration we feel into action. Will you join U.S. Pain Foundation and myself 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?

 

What could the outcome be?

I believe the change we seek, deserve and need will ultimately come from us. It is our personal experiences that hold the most clout, which is why it is imperative that we, the pain community, find our collective voice and unite. So to those who feel no one is listening, I am. You are not fighting this battle alone. U.S. Pain Foundation is here to offer you hope, support and information. And on behalf of the organization, I am imploring you to join our efforts in unifying together for the benefit of those living with pain. Help make it easier for future pain warriors to have needed access and treatment. My wish, my hope, is that no one has to go through the hell countless of us have to or had to go through to receive optimal pain care and the best treatment options available.  I have hope that our futures will be brighter because we will see to it that they are. 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.