Coping as Individuals

The National Center for Health Statistics reports that over 76 million people live with pain. I was reminded recently that we must not just think of this huge number but of the individuals that comprise it. I met a woman who is living with disabling pain, trying to cope and support herself, even though the Social Security Administration has informed her that she does not qualify for disability insurance; she isn’t in enough pain. We spoke for a few minutes and I was reminded that each of us is experiencing pain in a different way, facing life’s barriers and coping with the impact pain can have on our work, relationships, finances, mobility, and emotions as best we can, while few around us can even begin to realize the challenges we face. The first time I heard the number of people reported to be living in pain I was amazed, and I wondered how these people were all coping. Were they working or on disability? Were they seeing pain specialists? Was their pain being effectively treated? Have they ever had the experience in which a medical professional doubted their pain, or the intensity of their pain, and accused them of being a drug seeker? I wished I could know more about the individuals who make up the 76 million people the Center refers to, but obviously I can’t. A few weeks after learning about this huge number of people living with pain, I attended a conference for volunteers in the Power Over Pain Action Network (POPAN), a grassroots project of the American Pain Foundation (APF). I had recently been accepted as a volunteer spokesperson by the Foundation and this was the first time I was going to meet other volunteers and staff of POPAN; I looked forward to learning more about the educational and advocacy work I would be doing. I knew that most of the volunteers were people living with pain and I was interested to see how they were all coping on a day-to-day basis. I’ve lived with pain for over 45 years and while I mostly cope pretty well, there are still some days on which I feel as though I am not coping at all. I volunteered for this work because I believe that others can benefit from the experiences I have had in relation to my chronic pain over the years, both good and bad. What I didn’t stop and think about is that since each of us is very different in so many ways we will naturally react to our pain differently, and often uniquely. At the conference I met people who have lived with pain for many years and deal with it in ways I would never have thought of. Some feel comfortable saying they must lie down in the middle of a seminar, while others would rather bleed from their very pores than ‘make a scene’ and lay down on the floor. Others are taking strong pain medication, which is the only treatment that gives them relief, while others have doctors who refuse to accept their pain is that bad and won’t prescribe medication. And still others have nerve stimulators, morphine pumps, and other more recent methods for treating pain; methods that some doctors don’t even know can be used for this. The lack of knowledge by some medical professionals about the physiology of pain and the impact it can have on a person’s life is appalling and the more I heard the more determined I became to help bring about change. Many people at the conference have had to give up their careers. With all that I have had to give up and/or lost due to my health problems, this one action stands out as a defining moment for me; the rest of my life is divided into two phases, before and after I stopped working. For a few years after I left work I saw almost everything in that latter portion of my life as a negative, a continuation of my loss and the progression of my illness. The truth is I had good reason to feel that way, in a 13- month period I had several bad falls and broke both of my wrists, my right tybula/fibula, and my right hip, which together required a total of 8 surgeries to repair. During those months, and the six that followed while I recuperated from a total hip replacement, my life did feel as though it was all about loss and I felt I needed to do something to stabilize my emotional and physical well being. I needed to remember that this was not always what my life had been like, that I had accomplished much in spite of the many physical and emotional obstacles I faced, and that I could accomplish more. I knew that I was meant to use my experiences and accomplishments in a way that would help knock down some of the barriers I had faced and increase awareness about pain by the general public, but more importantly by the medical profession. I put a great deal of thought and time into how I could achieve these goals and in 2002 I founded the Chronic Pain Awareness Project, for which I wrote a concept paper outlining the goals and objectives I hoped to attain. Having worked in non-profits and universities my entire career I knew what I needed in terms of infrastructure and funding to fulfill the goals of the Project, however in my enthusiasm I forgot that I had left my full time job for a reason; I could not maintain the pace and meet the demands required of me in my position as a dean in a professional college. I had to make another difficult choice and either put my energy into building an organization or use the limited amount of physical energy my MS and chronic pain didn’t drain from me to implement some of the specific project related goals, without worrying about building a sustainable organization. I decided on the latter and spent the next few years advocating for positive public policy on behalf of people with chronic illnesses, chronic pain or physical disabilities, speaking at various public and health related meetings, and writing my own blog, until I discovered and began to contribute to this web site. Last spring I became acquainted with the American Pain Foundation and POPAN, and I was thrilled to be accepted as a volunteer Advocacy Spokesperson. When I first saw the web site for APF, I was struck by the similarities between their mission statement and goals and those of the organization I founded several years before. I had been on the right track then, and now I could volunteer for a formal organization with an existing infrastructure and truly use my time to: • Affect public policy in ways that will assure access to the most effective treatment for pain; • Inform those in pain on how to be their own best advocate with their medical professionals; • Increase everyone’s awareness about the impact chronic pain has on all aspects of one’s life; and • Use my voice to help make this a more accessible and welcoming world for the millions of people living with pain. Each person living with pain has his or her own challenges in life, whether they are at work or home, physical or emotional, and each of us must accept in our own way the changes in our life and lifestyle this pain may cause. I urge you all to look at the APF website at, www.painfoundation.org and see how you can participate in our efforts to help assure that every person in pain has access to effective pain treatment. I welcome your comments and feedback on any of my Share Posts. I have found those that I have received to be interesting and informative, and look forward to receiving more in the future.