A Q&A with Paul Gileno, U.S. Pain Foundation
Q: Has there been a change in the major concerns of people in pain over the past several years? If so, what are those changes?
Paul Gileno: Sadly, YES! What I have seen as Founder and President of US Pain, and as an experienced person with pain — and what we hear from people with pain — is that people are concerned about being denied treatments and being denied access to needed help to relieve pain. For a long time, people with pain have had a stigma around them that we are lazy and drug seekers. People have been embarrassed to take their medicine. As we worked to break that stigma and help people realize pain is real and it’s ok to need help, abuse of pain medicine was on the rise from non- pain patients which has led to the multiple barriers people with pain face today to gain access to needed medicine to help lower their pain.
Q: What is the purpose of the US Pain Foundation? Are you satisfied with your accomplishments?
PG: US Pain Foundation is created by people with pain for people with pain. Everyone who is involved with US pain has pain or is a caregiver of a person with pain. Our purpose is to first and foremost connect, empower and educate people with pain. We want people with pain to realize they are not alone, and that they can, and will, have fulfilling and hopeful lives despite having pain. We tell people all the time: you have pain, and pain does not have you. We work to reduce the suffering pain brings with it, the isolation, depression, stress and the stigma. We also work to advocate for people with pain making sure we have a voice in both state and National issues, making sure our needs are fought for.
I am extremely satisfied with our accomplishments to this point but, sadly, they are a drop in the bucket compared to what is needed, and we cannot do it alone. Together, we can, and we will, make huge a change.
Q: What one thing would you like to see that seems out of reach for you and the US Pain Foundation?
PG: This is a tough question but, if I had to boil it down to one thing, it would be that people with pain are not looked upon as second class citizens starting with our families, friends, HCP’s, legislatures, and the public, and that people with pain are empowered to learn they deserve the best treatment possible, and that pain is not a four letter word.
Q: How can professional medical association help the mission of the US Pain Foundation?
PG: I think working together for the same goal in pain care is important. A professional medical association can help US Pain with our mission in many ways. One way is to stand with us when we work on advocacy issues, and help buttress our concerns. Another way is to become more involved in education and empowerment of people with pain. A third way is to make sure people with pain know that the medical community is on our side and they are listening to our concerns. A fourth way is being open and honest, and giving us the best help and options to reduce our pain.
Q: What question would you like to be asked by the media?
PG: This is simple. The media never seems to want the positive stories of people living with pain, showing how they can have fulfilling and hopeful lives. I would like the question to be: “Can you share with us positive stories of people with pain so we can show that people with pain are much more the pain meds, but they are people who are productive in society, inspiring to others with pain.”
Paul Gileno is the founder of the U.S. Pain Foundation, and a strong force in the chronic pain awareness movement. His mission in life is to empower and support those living with pain. Having pain himself makes the issue of pain care a personal and public matter for him. The U.S. Pain Foundation is a nonprofit that exists to connect, inform, empower and advocate for the pain community. This grassroots organization continues to grow with over 45,000 members with representation in every state. You can follow them on Twitter and Facebook.