I cherish the caregivers in my life:
A family member who would drop everything a week before Christmas and fly hundreds of miles to be by my side when I undergo a difficult medical procedure;
The physicians who might dread to see me coming (but nevertheless try everything in their power to help me) because first of all, I have severe chronic pain, and second because I cannot tolerate most of the medications that would provide me enough relief to cope;
The pastors and fellow members of my church who comfort me, get me back and forth to medical procedures when I cannot drive myself, and hold me up in prayer;
The pharmacist who takes the time to go over my medications with me to try to discover which ones are interacting in ways that increase my problems;
The employer who knows of my disability and my age, yet values my skills enough to hire me anyway;
Friends near and far throughout the world who immediately respond to any hint of a problem with their words of comfort and care;
…..and this is only part of a long list that comes to mind today. There have been so many in my life through the years, and even now there are so many others.
I cherish these all the more because through the actions of many legislative bodies and a large percentage of law enforcement agencies, many perfectly legitimate physicians and other medical personnel who care for those who daily suffer chronic pain are being targeted, their patients ostracized, labeled “drug seekers” and/or hypochondriacs, and malingerers. Physicians who try to help me and other patients in pain are labeled “pill mill operators” even though they do nothing to break any laws whatsoever, yet in some places they face threats of incarceration, even death.
I am neither ignorant (unknowing) or unteachable. I have graduate degrees in four disciplines. Before retirement I was a full professor, and for seven years the vice president for academic affairs/academic dean of a college. I have lived and worked in another country, and traveled to many places on this planet. Before all that, as a nurse in a county jail I regularly came into contact with drug and alcohol addicts, dealers, and both straight and “dirty” law enforcement officers.
I have also been subjected to chronic illness and chronic pain since the age of 4 years, and have often been confined to bed, once for a period of two years. As a former nurse, and as a member of a family whose history and present lives include chronic illness and chronic pain, I am also one who fully understands the freely given sacrifices made by those who care for people who are too ill to care for themselves. Although people in pain often feel isolated and alone, the truth is that their pain affects a large network of caregivers who support them in many ways.
I am convinced that it is therefore also long past time for us as a nation to be educated about the differences between addiction (a disease of the brain that can only be managed, not cured), medication dependence (I depend on a medication when I need it, and my body may need to be carefully weaned off when I no longer need it), and tolerance (over time I may need more of that medication because my body learns to tolerate it—this, too can be carefully managed).
Bottom line: Opiates are consumed as a source of pleasure to illegal drug users and addicts, and used as a source of income to their dealers from all walks of life. For the former group, opiates ultimately decrease the quality of life. But opiates are also a source of life-sustaining relief to patients in pain, and when that pain is chronic rather than acute, the correct management of opiates may allow relief enough for the patient to cope and to have an improved quality of life.
We need to understand the difference, and not add to the problems of legitimate pain patients and their caregivers.
If anyone can understand the difference between illegal drug activities and the care of patients who require medical assistance at least to survive and perhaps be productive citizens, I am one who can, because of my own experiences and education. I have been fortunate, despite being unable to tolerate medication, to have received enough support and alternative treatments to lead a productive life.
Chronic pain, untreated, destroys life. Brain research studies show deterioration in brain function where chronic disease goes untreated. That deterioration is very similar to the effects of taking too much medication, and in part also to that of addiction. Through all of this, families and other caregivers also suffer, along with the patient. Much is required of them, and it may also be difficult for them to cope. But they do it, day after day, year after year. This is my way of saying thanks to my caregivers now and through the years.
What we who share this situation ask of you is to proclaim one day: March 20th, the first day of spring, to honor the dedication and love shown by these heroes. To honor those who willingly give of themselves and their resources to make life possible—even bearable—for those who daily suffer in pain.
During the month of September we celebrated National Pain Awareness Month. Let’s now look forward to the end of the long winter months when pain and the difficulties involved with treating it seem so much worse. Let us have a day of new hope, of renewal and light in the former darkness of cold and pain. Most of all, a day to support those who give their lives to support others.
March 20th, 2015. The first National Pain Caregiver’s Day.
Please join us!