By guest author, Nicole Hemmenway
Although chronic pain affects more than 100 million Americans, according to the U.S. Institute of Medicine, most people still do not understand the challenges that those with pain endure. Pain affects every aspect of a person’s life. It can destroy families and friendships, careers and livelihoods and the joys of life. It can even make a person feel insignificant and alone.
The U.S. Pain Foundation [U.S. Pain, website here] was founded in 2006 as a nonprofit organization dedicated to serving those with pain and their care providers. Created for people with pain by people with pain, our mission is to inform, empower, and advocate on behalf of the pain community. As an organization, we recognize that we may not all have the same diagnosis or disability. With that said, U.S. Pain believes that the physical agony and emotional heartache each of us faces is universal. Each of us deals with the same struggles and frustrations, just as each of us possesses the same internal strength and desire to find answers.
It is our commitment to share and validate the stories of the pain community. We want to become the leading source of support and hope for those living with pain and their caregivers. To do this, we offer positive programs that educate and inspire.
In 2010, U.S. Pain launched the INvisible Project. This national campaign creates chronic pain awareness through the photographs and stories of persons with pain. Showcasing the day-to-day challenges of real people with chronic pain, the INvisible Project makes visible the experiences associated with pain that are often hidden behind the walls of hospitals, bedrooms, and the confines of our minds.
Michele Gargan, PsyD, a clinical psychologist in Connecticut summarized the importance and need for such a campaign as follows:
Why do we need an INvisible Project to raise awareness of pain? Hasn’t everyone experienced pain at some point in their lives? If you start a conversation about your aches and pains in a social setting, you will most likely unleash a torrent of complaints about headaches, back trouble, arthritis, and trick knees, with each person outdoing the other in describing the severity and persistence of his or her pain. So, pain is a universal experience, right? Not so. The type of pain presented in the INvisible Project is invasive, intractable, insistent, and truly impossible to describe to anyone who has not experienced it.
Remarkably, nearly one quarter of the population suffers from severe, chronic, incurable pain. I say remarkably because our awareness of pain as a real illness is in no way proportionate to the extent of the problem. The medical profession has only recently identified chronic pain as an illness, and doctors vary widely in their understanding of how to identify and treat serious and unrelenting pain. The psychological components of debilitating pain are also seriously misunderstood, and too often pain patients are given the message that their experience of pain is imagined or exaggerated.
This is why the INvisible Project is so important. We need to raise awareness of and appreciation for the fact that pain is a real, measurable, and treatable illness that affects millions of people. We need to reach people in pain, people not in pain, and anyone who treats a person in pain.
Most of the persons chronicled in the INvisible Project, as well as countless others like them, were not initially the sort to participate in social conversations about aches and pains. In fact, they, like so many who live with unrelenting pain, were more likely to avoid drawing any attention to their situations. Years of treatment disappointments and negative societal judgment often make pain sufferers self-conscious and unwilling to expose themselves to further misunderstanding or criticism. This is how the invisibility of pain is perpetuated. Not only is the pain condition itself unseen, but also the people suffering from pain become invisible as they withdraw from social contact.
The brave individuals who have shared their stories in the INvisible Project have learned the importance of helping break the circle of invisibility. They know that what is not obvious is often not acknowledged, and so they are placing their struggles and triumphs in full view in order to draw attention not to themselves but to the multidimensionality of chronic pain conditions.
The people whose stories are shared here are true pain survivors. They identify themselves not merely as pain sufferers but as people for whom pain is only one aspect of a full life. They have learned to make the distinction between pain, which is physical, and suffering, which involves the mental, emotional, and social components of pain. They strive to manage the suffering aspect of their pain through meaningful activity, satisfying relationships, a rich internal life, and a focus on what is healthy in their bodies and minds. They are role models for all of us, and they inspire us to live in generosity and hope.
Since its inception two years ago, the INvisible Project has been viewed hundreds of times in more than 15 states at various medical conferences, state capitals, and U.S. Pain events. It has validated the lives of millions while informing the public about the toll pain has on a person’s life. It is the belief of the U.S. Pain Foundation that the photographs and stories from the INvisible Project are helping to lead a movement: we feel it is because of the courage, conviction and resilience of the pain community that change is occurring in the medical field. Here are two comments from project participants:
- “I don’t want to be remembered as someone who pitied herself; I want to be remembered as a person who tried, a person who made a difference, lived life, and found joy.” –Ellen Smith, EDS patient and chronic pain advocate.
- “I now view myself as disabled, but with the benefit of not always having to feel as though I am. I move forward because giving in and giving up are not an option.” –Wendy Foster, unidentified chronic pain disorder.
U.S. Pain is currently preparing for the 2012 INvisible Project. If you are interested in becoming involved in this national campaign, please visit http://www.invisibleproject.org.
About the Author: Our correspondent, Nicole Hemmenway, is author of No, It Is NOT In My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon and is a leading voice for chronic pain awareness and an advocate for patients’ rights. She created Heroes of Healing [heroesofhealing.com], a site for caregivers and those with pain to share personal stories of struggle and triumph. Nicole serves on the board of the U.S. Pain Foundation and is Director of the national chronic pain photo exhibition called INvisible Project. She can be contacted at email@example.com.
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