Why Can’t They Understand…? By: James E. Hagen, M.S.
Pain is real when you get other people to believe in it. If no one believes in it but you, your pain is madness or hysteria.
Naomi Wolf, author Violence, The Beauty Myth
In a letter to the editor of Clinical Journal of Pain a few years ago, Dale I. Genova-Strickland shared, “My pain is hard to explain. People look at me and cannot believe the hell I live day in and day out.”1 How true this statement is for those living with chronic pain. For those of us who work with these individuals, we know how the perception of acceptance from others is lacking.
If there was an obvious amputation, or even a cast on a limb, those without experience with pain might better comprehend what one goes through with this “invisible disease.” Without apparent physical abnormalities it is difficult to understand, or “believe” how one might be suffering. One of the responsibilities of those who care for and treat the person suffering with pain is to help him or her deal with the lack of understanding or appreciation of their physical circumstances.
Pain affects almost all aspects of a person’s life: interpersonal, physical, emotional, psychological, social, financial and employment. How do we deal with this? There are many answers to this question, as each of us has our own perspective. If you are a person with pain, your response to this question might vary from those of us who care for the pain populous, which often can disagree with what employers and insurance companies believe. Those people who share a personal relationship with someone living with pain probably have an entirely different perspective than the rest. How perplexing this can be for all involved.
Chronic and acute pains are not the same. Acute pain serves as a warning sign of injury. This can be a traumatic damage, as in an accident or burn. Chronic pain often has no known explanation. Differing from acute pain, chronic pain may result in physical, psychological, and social changes of function in varying degrees relating to preexisting internal and external reasons. The concept of suffering is closely related to chronic pain. 2
When The National Pain Foundation began gathering information on what was important to the pain population, we organized nationwide focus groups to address this question. What was the most important issue for those attending the focus groups? Validation. These people, not unlike most of you who use the web site of The National Pain Foundation, wanted people to believe that their pain was real.
This is an educational process for not only “patients,” but for all of those around them. We polled 122 physicians with the following question: “In medical school and residency, how many hours were devoted to treating pain?” Although not surprising, the answers were abysmal – 92% of respondents answered, “one hour or less.” The remaining 8% were in the range of two to five hours. The only physicians who described having any type of formal training during this time in their education were anesthesiologists who were educated in acute, postoperative pain relief. Admittedly, this information was elucidated outside the constructs of a formal research study, but the inclination from this group of primary care and specialty physicians was that their formal training was vastly lacking in the care of those people dealing with chronic, painful conditions. This is changing, but not quickly enough.
Education for everyone needs to address not only validation of the real pain that people suffer, but the anxiety, depression, sadness, loss, anger, low motivation and other factors that arise when someone is in pain. From a psychological standpoint, John Mark Disorbio, Ed.D., has addressed many of these factors here on the web site, Psychological Factors and Pain. Psychological Assessment addresses the rationale behind the important aspect of psychological testing in the pain community.
A patient’s ability to work is often affected by chronic pain. This includes the ability to carry out normal household tasks or leisure activities. A study was conducted concentrating on this issue and researchers reported that 91% of patients living with chronic pain were affected in some manner.3 Assisting people with this troubling matter is part of not only the education process, but also with various therapies, either physical, psychological, or both.
Major depression and insomnia are frequent findings or complaints of members of the chronic pain segment of society. In a recent study of patients participating in multidisciplinary pain centers, a high percentage of people presented with major depression (30%) and insomnia (64%). These patients with both sleep disturbances and major depression had the highest levels of pain-related impairment.4 The medical community needs to understand this information and provide education and treatment for these issues. Medication alone is probably not the “magic bullet,” but along with psychological counseling these disabling concerns can be effectively treated.
Where does one living with chronic pain find the needed information to assist them with these quality of life issues? Often times, finding a health care provider who specializes in pain medicine is the answer. Many times, participating in a multidisciplinary pain center program that offers a variety of specialists working together closely with the patients can provide the desirable treatment outcomes. These are options for those who have resources in their community.5
The Internet presents many web sites that address chronic pain. Today, if “pain” is searched on the search engine, Google, one will find almost 17 million references. Many of these are fraught with misinformation or are provided as an advertisement for products or services.
There are few sites that present peer-reviewed, accurate information for those living with pain. The peer-review process provides an invaluable screening service that can provide access to quality and relative importance of the data presented.6 The Internet can be a starting place to obtain pertinent, quality information if one uses information that has been under scrutiny of experts in the field for the subject. The National Pain Foundation’s web site strives to be expert in the field of obtaining useful, peer-reviewed data for all of those living with chronic pain and those who interact with this group.
Support groups and quality Internet sites offer much hope, information and sharing for the pain population. This can be of significant value to all involved. How better to gain validation of one’s pain than to work with others who either share the same problem and those who work with pain patients on a daily basis? This is a cost-effective and mutually beneficial way to gather help and share experiences with people of the same interest or medical situation.
We all need to be part of the continuing role of education for those concerned with chronic pain and those who live with it. All of us can make a major change in someone’s life by sharing care, support and valid information with others. Be a part of this process. Join a support group, as you have much to offer to others. Find Internet sites that address your issues, concerns and interests. Be a part of the pain community in anyway that you can. You will help other people living with the same challenges and, in turn offering support to others will help you.
Be an educator in your own way. Teach that pain is real. Help validate another’s pain. Who better to teach than one who knows?
Whoever is spared personal pain must feel himself called in to help in diminishing the pain of others
Dr. Albert Schweitzer Recalled on his death; September 4, 1965
References 1.Genova-Strickland: Clin J Pain 13(2) 1997.178-179 2.Breen: Adv Nurs Sci 24(4) 2002. 48-59 3.McHugh: Nurs Stand, 15(52) 2001. 33-37 4.Wilson: Clin J Pain, 18(2) 2002. 77-83 5.Gallagher: Clin J Pain 15(1) 1999. 1-3 6.Perouth SJ; Dreon DM: Analysis of Internet sites for pain. In Krames E, Reig E (eds): The Management of Acute and Chronic Pain: the Use of the “Tools of the Trade”, Proceedings of the Worldwide Pain Conference 2000; San Francisco (USA); July 15-21, 2000; Monduzzi Editore; Bologna, Italy