An expert panel was convened by the National Institutes of Health (NIH), US Department of Health and Human Services, to discuss how to treat and monitor the estimated 100 million Americans in chronic pain. The medical community acknowledges relentless pain exists, yet there are numerous misconceptions out there from silently condescending judgement to open condemnation by loved ones, strangers, and health professionals of those desperately needing pain management to endure the day.
When I was diagnosed in my teens some 40+ years ago, medications for inflammatory rheumatoid disease were ineffective in halting the destruction of joints, cartilage, tendons, and bones causing permanent damage and losses. Each day for most of my life and the lives of hundreds of thousands of others has been complicated by consequences of on-going, and many times incapacitating, acute pain due to disease(s) with no known cure. Complex chronic complications add heavily to an overburdened patient.
The typical non-affected individual has nothing in their life experiences to compare and understand chronic disease pain. Since it is invisible to the eye, it is difficult to understand. Their silent, and at times whispered, judgement breaks the heart.
We can’t control the thoughts and unkind words of others. Many of us have found that a grateful attitude of joy goes a long way in coping with the discomfort, helplessness, and relentless hurts. It is never easy, but it has rewards. I have a dear friend (an angel) in my life who has been in long-standing acute pain for several years — not weeks or months — years! She is a light in my life; she has a strong spirit and is one of my support team. I am so blessed to have family and friends who have been with me for 40+ years, others with fewer years but immeasurable love.
Life with chronic disease pain is hard — mentally and physically. I read recently the older you get, the more you realize that it isn’t about the material things or pride or ego. It’s about our hearts and who they beat for. I have been fortunate to know of the work at NIH and of researchers who have dedicated their life’s work and hearts to answering complex questions surrounding disease. Chronic pain has been named a priority resulting in the institutes and centers intensively collaborating together to answer our cry to stop the pain. We are being heard and together we can find strength in knowing we are not alone.