One of the things that drives me is knowing that chronic pain is so pernicious that it must be aggressively addressed. I think of 'the dis-integrating' effects of chronic pain. Left untreated, individuals are separated from their careers, their friends, their families and ultimately themselves. Our job as clinicians is to try to put those pieces back in place one patient at a time. As advocates it is to ensure that pain is appreciated and treated, and that no one individual or group stops the life saving work that is desperately needed.

Pain has many faces. Too many of them are shades of brown and black. Pain doesn't discriminate; it just waits for an
open door.

Giving is receiving. Giving time to tell the stories of others has been the greatest gift of learning, support and hope that I have ever received. Focusing my energy on other people's pain has relieved my pain by distraction. I'm able to focus on that person and their particular situation; to present a complete picture and ask for a solution via the media, the legislative process or both.

The wonderful thing about our system of government is that every citizen may participate in the process at many levels. It may seem intimidating at first to be interacting with politicians that are like celebrities. Always keep in mind that they are people just like us with experiences very much like our own. They are doing a job for citizens in their home districts. Speaking up and letting them know your concerns will educate them and may just provide the motivation to put healthcare and pain at the top of the legislative agenda. The power of change is within all of us just waiting for each of us to speak up.

As a professional dealing with end of life issues for more than two decades, I’ve often championed the essentials of effective pain management, but as a spouse of someone who’s lived with occasional debilitating pain for more than 30 years, I can also attest to its toll. The insidious nature of chronic pain too often depletes and distorts life not only for its primary target, but all those caught in its web. Daily, we must choose resilience over resignation and solidarity over silence. Our convictions must be fierce and we must be relentless in our efforts to overcome scientific barriers and societal biases.

Since the American Chronic Pain Association began in 1980, many things have changed in the world of pain management. With the changes—some good, some bad—it is important for the person with pain to take an active role in the process of moving from patient to person. We need to ensure that the consumer voice is heard at the very beginning of the process of designing research through how health care is delivered. By taking an active role we have the ability to influence positive change in our health care delivery. It is possible to live a full life in spite of pain but you must get involved . . . each voice counts!

Individuals suffer from unrelieved pain every second of every day; it is unfair and unjust. As a health care professional I can not imagine the allowing this to continue, it is a battle we must fight, allowing for no other outcome than our patient's comfort.

Be persistent. Don’t give up. Take an active role as a partner with your health care team. Finding quality pain care is often difficult and requires vigilance, persistence and strength, often when you have little of each. But being a partner in your care and advocating for your needs usually is the best way to go.

Pain is the most common and prevalent symptom occurring in several conditions and patients around the globe are suffering needlessly, even when effective treatments have been identified and made available. We, as representatives of professional organizations, the academia, in collaboration with the pain and palliative care workers from all countries in the world, need to bring this to the attention of policy makers, and advocate for increased access to effective and safe treatments to improve the quality of life of those we care for.

We, at the American Academy of Pain Management, understand that the best way to treat chronic pain is through an integrative approach that brings together conventional treatment and a wide range of complementary and alternative modalities and addresses the person as a whole.

Improving the quality of pain management remains as one of the most important aspects of care around the world. It is essential that we share knowledge and resources to support clinicians in the assessment and treatment of pain as one of the most important factors influencing quality of life in chronic disease and terminal illness.

There is no debate among public health experts about the fact that pain is under-treated. Under-treatment of pain has been recognized as a public health crisis for decades. The consequences are often catastrophic for patients, in terms of suffering and disability, as well as for the healthcare costs we all share, since untreated and under-treated pain often lead to expensive utilization of resources. But turning away from patients in pain simply isn’t an option. Not if we are to meet our ethical responsibilities, and not if we care about our patient’s well-being. If we are true to an age-old ethic of medicine, that we “cure when we can but treat suffering always,” we must first and foremost respond to our patients’ pain.

Pain and Policy Studies Group is concerned about the extent that state laws and regulations create barriers to patients’ access to effective care for chronic pain. I’m very impressed that many healthcare professionals, policy-makers, licensing authorities, patients, and members of the general public are collaborating to remove these barriers and improve their state’s policies. Fortunately, now there are a number of valuable resources to empower anyone to become an informed and effective advocate for policy change. Such efforts will help achieve a regulatory environment that facilitates, rather than hinders, access to adequate relief for people living with pain.

Historically the voices of women, especially women of color have been silenced. As we begin to uncover our past, the oppression, the pain we experienced is being detailed, however embarrassing it may be. To continue the silence would be a detrimental step backwards. The more we learn about our historia, the better we can serve our gente.

Pain is an equal opportunity discriminator – no more than a common thief in the night. It steals the victim’s health and well-being, sense of self, friendships, life’s work, and peace of mind regardless of age, race, gender, or social class. Whether pain is short lived, chronic, or due to cancer, we have the ability to alleviate pain and suffering. My vision is for the millions of people living with pain to come out from the shadows and to live fully. Committed people: patients (and their loved ones), health care professionals, researchers, and policy makers, working together, can create fundamental change and transform the way we think about and care for people living with pain.

There is a desperate need in pain management for a collaborative, interdisciplinary approach to challenge current practices and bring about change.

No kind of sensation is keener and more active than that of pain; its impressions are unmistakable.

Although we have evidence to guide assessment and treatment of pain in older persons, quality pain care is still inconsistent and many elders struggle with pain and its impact on their quality of life. We should not accept “live with the pain” or “there is nothing else we can do.” Older persons, especially those unable to speak for themselves, need strong advocates to assure pain is recognized, carefully evaluated and effectively treated.

I have been a pain relief advocate for over 30 years. In 1975, I fought for every milligram of medication that my Dad received in his last two weeks of life. In 1997, I again was faced with a family member NOT receiving good pain care. My sister was labeled a drug seeking, addicted, anxious woman after repeatedly (for three years) complaining to her physician about abdominal, back and leg pain that did not go away and continued to get worse. She got second, third and fourth opinions. But due to the blinding effect of the labels her symptoms were dismissed. To make a long and frustrating story short she eventually did find a compassionate physician (a gynecologist) who listened, assessed and looked for the cause of her pain. After a simple laparoscopic surgery she was diagnosed with advanced invasive colorectal cancer. She died one year later leaving behind a grieving husband to care for their three young children as a single parent.

My sister, Althea, is my inspiration and what drives my passion as I work with and advocate for people in pain. I am a tireless pit bull when it comes to fighting for respectful, compassionate and just pain care for all who suffer unrelieved pain. When you label your patient it will cloud your vision and critical thinking. Listen to their story and then do something to try to lessen their burden of pain. Pain care and advocacy requires a commitment of time and spirit, it is not for the faint hearted but believe me when I say - it is the most rewarding work I have ever done.

I no longer just fight for milligrams of medication, I fight for respect, compassion and justice for persons in pain.

My sister Althea, My inspiration and strength.
(1956-1998)
Althea on her 40th birthday in 1996 just two years before her death.

The true secret of happiness is built upon the bedrock of giving. The greatest gift we can give someone is our ear. Many lives have been changed simply through the art of listening.

Working together with a sense of urgency, we can make a huge difference in the suffering of cancer patients and survivors today. The passion that patient advocates offer to the cause is a force like no other.

We must remember that pain is often the tip of the iceberg. Covering up the symptoms does not fix the problem. It is through an investment in your patient of time and caring that you begin to get a feel for what is really going on. In an age of 15 minute appointments, we can only scratch the surface. In traditional Native Healing ways, we invest the time to help our patients take control of their own healing which includes responsibility for
their own lives.

Undertreated pain continues to be a pandemic in this country despite incredible advances in understanding and technology. Education of patients and the primary care provider is necessary to overcome this national tragedy.

Cancer survivors deserve to have their pain managed effectively so that they can focus on living life to the fullest. We must ensure people have access to care that promote the highest quality of life possible.

People who live with chronic pain learn to focus on the gifts of living -- even with and because of pain -- and giving. Living experiences with a continuing renewal of appreciation and dedication to work with high productivity, family, friends, expression. Giving and supporting not only other people with pain but anyone who needs a kind word or an action. Why? Because to live with pain requires a knowledge that none of us stands alone, that we are all better off helping each other rather than retreating to loneliness.

The goal of APF’s Military/Veterans Pain Initiative is to improve the quality of life of military/veterans who suffer from pain by collaboratively working with other organizations to provide resources, information and support to veterans with pain, their loved ones and caregivers; and to advocate for quality acute and chronic pain care and increased research. We have enormous concern for our men and women serving in Iraq and Afghanistan, who have survived battlefield injuries that previously would have been fatal, thanks to improvements in battlefield medicine and evacuation. The result, however, has left some suffering with chronic, daily, disabling pain. We know the high, multidimensional costs of untreated or under treated pain on individuals and their families. Chronic pain conditions such as those that can come from traumatic brain injury, multiple fractures, traumatic amputation, crush injuries and other battlefield injuries can be devastating to individuals and their families as they try to cope with the impact physically, mentally, socially, psychologically and economically.

Those who suffer severe chronic pain see their daily lives disrupted—sometimes forever. Their pain and their constant search for relief affects their function, their relationships with those they love, their ability to do their work effectively, and often their self esteem. Chronic pain is often accompanied by or leads to sleep disorders, emotional distress, anxiety, depression, and even suicide. We need to provide our armed service men and women and their families with the resources necessary for effective pain relief from the point of injury and throughout their lives. Our veterans, all of our men and women who have served, past, present and future, who have suffered the wounds of battle, have earned the right to consistent high quality pain management – have earned the right to freedom from pain - and it is our obligation to them to provide it. It is the
least we can do.

There is an uncomfortable truth whenever we speak about the disparities in pain management that many patients continue to face. We, as a society, must move past our discomfort and work together to understand the complex causes of these inequities. And then, we must work together to empower our patients and their families to expect optimal pain control regardless of race, gender, or economic status.

Attention to Pain and Suffering of all individuals seeking healthcare is a requirement by the highest standards of professional practice and excellence.

Practice the ABCs of pain management Assess, Believe the patient and Care for them.

The negative impact of unrelieved pain on the lives of individuals and their families, on the health care system, and on society at large is no longer a matter of debate. The unmet needs of millions of patients combine into a major public health concern. Although there have been substantive improvements during the past several decades, the problem remains profound and change will require enormous efforts at many levels. Pressure from patients and the larger public is a key element in creating momentum for change.

Is there life with chronic pain? I used to wonder about this after I was diagnosed with CRPS in 1998. I educated myself with all I could about CRPS, I searched until I found a doctor knowledgeable and willing to treat me. With the help and support of others, and my wonderful husband John, I found other things I could do, and I soon found I could have a life with chronic pain.

I saw this written not to long ago, "If not us, then who? If not now, then when? I really liked it, I decided then that I had to make my voice heard. Being a person with pain makes this a daily struggle, but I can't stop-we can't stop we have to push on.

I've also noticed that when I'm helping others in pain, my pain level usually goes down even if only for a moment, it’s a moment free of pain. I love the way helping others makes me feel, and often find myself craving this, like a choco-holic craving chocolate!

The advice I would offer to anyone dealing with Chronic Pain, don't ever give up hope, educate yourself on the diagnosis/condition, don't be afraid to ask for help, and last but certainly not least- you're not alone, were here to help. Together we can make a difference-together there is hope, together we must unite and become- A United Voice for Chronic Pain.

Now well into my 11th year as a chronic pain patient, I’m still waiting for my body to “get a clue” and for the pain meds to go beyond allowing me to be “functional” to helping me get my life back. Trying to maintain a positive attitude and hope for a pain-free future becomes more challenging every day. Still, I’m grateful to my pain management team for never giving up on me. I also know that focusing on helping others facing difficult health challenges helps me to keep my own situation in proper perspective. While my physical body holds me back from doing so much of what I once enjoyed, I know in my mind that I’m free to soar, and my dreams and memories will still take me where ever I desire.

Photo credit: Photograph taken by Richard JP Cavosora

To be or not to be a patient advocate was never an issue; I knew had it in me. The real question was how to be an effective patient advocate. I found my answers in the advocacy tool kit I was given during the advocacy and leadership training's in which I participated in collaboration with other nonprofit organizations, such as the National Fibromyalgia Association and the American Pain Foundation. The first time I was handed the tool kit, I noticed that mine was red, quite different from the pretty ones being distributed. The reason for the red binder was that they were short on the correct binders for the advocacy tool kit. Instead of remaining disappointed, I simply named it my Red Book, as a reminder to me that the color red is symbolic with empowerment and achievement. Since then, through P.A.N.D.O.R.A. we have had our own advocacy and leadership training titled Advocates Extraordinaire©, and I have of course shared with others this wonderful training and have given out the extra advocacy tool kits I received. But not my Red One. That one is mine to keep.

For too long, patients and their families have suffered due to a lack of information, its communication from their health professionals and general societal perceptions about disease management and quality of life. It is every patient's right to receive the best standard of care including a life without pain.

Emergency physicians have the expertise and the tools to treat a person in the midst of a pain crisis, but those with chronic pain need support beyond the hospital’s walls.

Managing chronic or recurrent pain over a long period requires more than an emergency department can offer in a single visit, and one of our goals is to help people navigate a fragmented healthcare system.

When I lost my career as a performer 25 years ago due to CRPS and fibromyalgia, my life was turned upside down and I truly believed it was over. Pain advocacy was what saved me, providing a new path to direct my passion. And a new life emerged, full of purpose and challenge.

I always encourage people in pain to re-invent themselves, leaving their boxed-in world of suffering behind. We can’t allow our pain to define us; instead, let’s use the experience to enlighten and educate. Each of us can find the courage to take on the risks of advocacy. Speak up—and when they don’t hear you, bang that drum even louder. Believe in yourself, and know first and foremost, your message must be heard.

Here’s a promise. If you remain resolved and determined in your role as pain advocate, you will save lives! And please borrow this battle-cry which has inspired me on many occasion; “Be bold, and mighty forces will come to your aid.”

Pain Management professionals have a moral and ethical obligation to let their voices be heard in public policy development. It is only through education of policy makers and participation in these endeavors that adequate access to appropriate pain care can be extended to all people with pain.

I once heard someone say that “the best life lived is a life lived for others.” Once we, as pain patients, have regained our quality of life, our time is the greatest gift we can give to “the cause” and others who are in need. No allocation of time is too small. Simple acts, such as writing a letter to your elected official, offering a listening ear to a person who is suffering or volunteering your individual talents to community advocacy groups, mean so much. If we each do just a little, cumulatively, our efforts add up and ultimately, this is what is making a difference in the
fight against pain!