Since September is Pain Awareness Month, we’re highlighting three more important pain awareness organizations: U.S. Pain Foundation, For Grace, and the group that started Pain Awareness Month, American Chronic Pain Association.
A few months ago, we told you that pain awareness groups were founded to help you and your loved ones connect with others experiencing chronic pain. And that these organizations provide many valuable benefits – including resources, research, education, advocacy, and ways to stand together – all at no cost.
Here’s how pain awareness groups help people like you:
American Chronic Pain Association (ACPA)
Since 1980, the ACPA has focused on the needs of the individual living with pain. Their mission is:
- to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain
- to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain
The ACPA provides a path to dignity and empowerment, so that people with pain can leave behind the role of passive patient and become an active participant in both their health care and in life.
How this pain organization can help you
Support groups – ACPA support groups focus not on the experience of pain but on learning and practicing pain management skills in daily life. In many countries around the world, members support and encourage each other toward meeting realistic goals that improve quality of life. Through the Veterans Administration, they also offer support groups specifically for members of the armed forces.
Education – The ACPA provides a wealth of educational materials, including self-help manuals, videos, workbooks, and other resources that help people with pain and their families. These materials – created by people with pain for people with pain – offer unique insight into the reality of chronic pain and its management. They focus on step-by-step learning and personal growth that can offer hope for improving quality of life for those who live with pain daily.
Communication tools – The ACPA believes that people with pain and their providers should work as a team. To facilitate quick, accurate, and productive communication among team members, they have created an array of graphical tools that can visually present key information about symptoms, their triggers, and the impact pain has on the ability to function. Many of these tools are available interactively on line and also apps for hand held devices.
Websites – The ACPA website makes tools, videos, and other educational and informational materials, with the exception of our workbooks, available for everyone at no cost to them. In addition to their general site, they also host Growing Pains, an interactive site for young people with chronic pain, and VIP, a website for veterans living with pain.
Pain Awareness Month
In early 2001, the ACPA organized a Pain Awareness Campaign pulling together more than 70 organizations across the country. This effort resulted in the establishment of September as Pain Awareness Month. Over the years, many others have joined to bring greater attention to the social, individual, and economic impact of pain in our communities.
U.S. Pain Foundation
Created by people with pain for people with pain, the U.S. Pain Foundation team understands and validates the challenges 100 million Americans endure daily. Since no one can better understand the grief, struggles or minor triumphs than a fellow pain warrior, they view themselves as family: a family that will be by your side during the bleakest moments to offer hope and provide information as well as celebrate the smallest of victories.
U.S. Pain Foundation validates the experiences of those with pain. By recognizing the courage it takes to fight each day, the organization emphasizes the importance of viewing each other as “pain warriors.” The foundation believes that each one of us inspires the other; while we each can make a difference on our own, together – with one resound voice – the impact becomes greater.
How this pain organization can help you
Education – U.S. Pain focuses on improving pain-coping skills and redefining a new normal through various informative materials, including brochures to learn more about your pain and complementary treatments as well as fact sheets on the federal and state pain policy issues. They educate the newly diagnosed about their conditions, and teach others about the issues surrounding access to care as well as the pros and cons of each medication.
Advocacy – Becoming empowered is the first step to advocating for your own care and finding purpose in life again. The organization advocates for many key issues that are important to the pain community, such as medical cannabis and insurance-covered-access to alternative therapies as well as pain medications. You can even track bills by state on their website. Their goal is to engage people to become more involved in advocacy and take a leadership role.
Programs – The U.S. Pain programs empower and educate those with pain to become proactive and better informed. The foundation’s flagship program is the INvisible Project, which brings visibility to the invisible, internal struggles of people living with chronic pain. Other programs include Pain Medicine 411, Take Control Of Your Pain, Pain Warrior bracelet, Learn About Your Pain and the Pain Ambassador Network.
Website – The website shares a wealth of information about programs, advocacy and awareness campaigns. As well as many resources to help those with pain find information, including caregiver articles, informative videos and links for pediatric support.
Support groups – Support groups meet in-person and via conference calls. Find support group listings on the website – an extensive list organized by state.
People with pain matter
U.S. Pain Foundation is dedicated to educating and empowering those with pain, creating societal awareness and public compassion, and advocating for positive policy change. As the leading national nonprofit for those with pain, it is their mission to provide real hope, resources and information to everyone affected by pain.
For Grace is the only pain advocacy organization that focuses specifically on women in pain and their unique challenges. It was founded in 2002 by Cynthia Toussaint and John Garrett, Cynthia’s partner in life and caregiver.
The organization’s mission is to promote self-management care and wellness for women in pain – and they focus their work on the gender bias women face in the management of their chronic pain.
Women and pain
Women are pre-disposed to all of the chronic pain diseases. They feel pain more intensely than men and have a lower pain threshold. However, when women report their pain to their physicians, they’re told that it’s hormonal, all in their heads and are often given sedatives and psychiatric referrals, men in pain are much more likely to be believed and given pain treatment including opioids.
How this pain organization can help you
Legislation – For Grace has spearheaded two California Senate Informational Hearings. The first was about CRPS and the second explored the gender disparity toward women who experience pain (that hearing is still the most requested video in Sacramento Capitol’s history.) For Grace also championed a Sacramento staff briefing to launch a California pain commission. They’ve sponsored two California bills: one for CRPS awareness and the other to abolish Step Therapy.
Website – For Grace’s award-winning website puts a spotlight on the unique plight of women in pain. Share Your Story project gives women in pain the narrative therapy opportunity to share their pain journeys – including the abuse they suffered at the hands of the doctors they trusted to help them.
Events – This September, For Grace hosts its 9th annual Women In Pain conference. Each year the conference has a theme that teaches women in pain and their caregivers the importance of self-management. It’s a wonderful day filled with laughter, tears, education, bonding and hope for better wellness. The conference is “for women in pain, by women in pain” with a planning committee comprised solely of passionate women challenged by high-impact pain.
Focus on creativity
Due to the leadership’s performance backgrounds, For Grace uses the creative arts to compliment the awareness and educational goals of the organization. They have a dedicated list of “supporting artists” (singers, actors, dancers, illusionists, visual artists, etc.) who contribute their great talents for PSAs, conferences and other projects.
An important spokesperson
For nearly 15 years, For Grace has generated much local, national and worldwide media that brings awareness about the plight of women in pain to the masses. Cynthia Toussaint has generated most of this media and she consults for, produces and co-hosts many of these articles and TV/radio programs.
To learn more about Cynthia, read our book review Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.
So that’s how pain awareness groups help people like you. Which pain organizations have you been involved with? Please share your experiences below.