You’re Not Alone: Finding Support from Others Living with Pain

Like most people who sustain an injury, I never imagined that the resulting pain would become part of my daily life.

For years, I was on my feet every day managing the gourmet food and catering business I owned and operated. In the spring of 2003, I severed my sciatic nerve in a workplace accident, leaving me with degenerative disc disease. I was later diagnosed with complex regional pain syndrome (CRPS), which can cause continuous burning or throbbing pain and sensitivity to touch. I had multiple surgeries and tried different treatments for my pain, but nothing worked.

The constant pain put a huge strain on my personal life. I got divorced, and my relationships with my six siblings suffered. Ultimately, once I accepted that the pain was chronic, I had to sell my business.

Once I realized my pain wasn’t going away, I started to look for support. I knew there must be other people in similar situations, and I thought it would be helpful to talk to them about our shared experiences.

As one of the nearly 100 million people in the U.S. who are living with pain, I quickly realized that the need for resources and support was great. I started the Connecticut Pain Foundation in my home state to provide a community for people living with pain. Interest spread, and I soon helped the Connecticut Pain Foundation grow into the U.S. Pain Foundation, a nonprofit dedicated to serving people who live with pain and their caregivers.

With more than 70,000 members nationwide, the U.S. Pain Foundation advocates on behalf of Americans living with pain. We track bills and engage with government officials on a regular basis to make sure the voices of people living with pain are heard when national pain policy is written. We have supported legislation in several states that encourages pharmacists to honor doctors’ prescriptions for pain medication, and we are working to get similar legislation passed across the country.

In an effort to raise awareness and eliminate the stigma that surrounds people living with pain, the U.S. Pain Foundation has started projects like the “INvisible Project,” a traveling display that brings to life the many faces of people living with pain through real photos. We also work to bring the pain community together through programs like Heroes of Healing, a private, online support community, and our Pain Ambassador Network, which relies on a network of volunteer advocates to be the voice of people in pain and who give hope to their communities.

While I am honored to have the privilege to lead a national pain organization, I consider myself first and foremost to be a person who lives with pain. I relate to the struggle and isolation pain brings, and I know how important it is to feel heard and understood. The U.S. Pain Foundation was created by people with pain for people with pain. Everyone involved with our organization either has pain or is a caregiver of a person with pain.

I believe that if we work together, we can reduce the suffering pain brings with it, along with the isolation, depression, stress and stigma it involves.

About the Author: Paul Gileno

Paul Gileno has become a strong force in the chronic pain awareness movement. His mission and message in life are clear — to empower and support those living with pain. He believes that by exploring new ways to cope, those with pain can find personal answers that enable them to grow and live once more with meaning and purpose.

In 2003, Paul suffered a workplace injury that severed his sciatic nerve and left him with degenerative disc disease. After multiple failed back surgeries, grueling physical therapy and various pain management therapies, he came to accept that his pain was chronic. In time, Paul discovered that he had a new calling in life — helping chronic pain survivors.

Living with degenerative disc disease, failed back syndrome and complex regional pain syndrome for over three years, Paul eventually founded the Connecticut Pain Foundation in 2006, which later grew into the U.S. Pain Foundation. U.S. Pain exists to connect, inform, empower and advocate for the pain community. In addition to his work with US Pain, Paul is on the Advisory Board for PainPathways magazine, the co-administrator of Heroes of Healing and co-director of the INvisible Project. As part of his work with U.S. Pain, he advocates for and supports legislation at the state and federal level that aims to ensure access to quality pain management. He supports various organizations that raise awareness and fund research on behalf of the chronic pain community, as all endeavors shift perceptions about pain and motivate change.

Teva Pharmaceuticals reviewed and edited this post prior to publication.


September 2016

Penney Cowan, Founder and Executive Director of the American Chronic Pain Association, discusses the importance of support groups and finding a balanced approach to pain management.