Claiming Multidimensionality of Pain: Part IV (Part B)
Claiming Multidimensionality of Pain: Part IVChronic pain is a disease and an illness, Part B
by Ma'ayan Simon
One way to think of illness is that, if the biophysiology of pain is a single point in a constellation, illness comprises the constellation in its entirety. Laurie Edwards, author of In The Kingdom of the Sick: A Social History of Chronic Illness in America, differentiates disease and illness as "disease being the objective, evidence–based experience of being sick and illness being the subjective, lived experience of patients" (16). Similarly, Thernstrom states, "… as lived experience, the disease of pain turns into the individual suffering of illness, an understanding of which requires studying the patients as well as the disease" (195). In other words, how the experience of pain impacts the person is the domain of illness.The intersection of disease and illness is where, as I see it, pain can become a distinct disability, which comes with its own complex set of personal, political, social, and financial struggles. Even so, in my experience, little attention or consideration is given to all that is being laid on the patient and the patient's livelihood with a diagnosis of "chronic pain." Imagine a patient casually being given a diagnosis of cancer and then being told in the next breath, "nothing more for me to do here. Seems like your best bet is to learn how to manage..." with a half-hearted shrug and an air of nonchalant resignation.Pain is debilitating not only because it is painful, but also because of its draining effects, such as nervous system overload, brain fog, disabling fatigue (not the same as simply being "really tired"), hormone imbalances (including, among others, thyroid and adrenals), digestive disturbances, unpredictability, loss, and all of the energy it takes simply to exist and get through the hours and the day. This is to say nothing of how exhausting it is to negotiate receiving access to care and organizing other support for daily tasks.I explain the illness of chronic pain disease as being like having a computer with multiple windows open: the computer runs alright focusing on a single program, but the multiple demands of having too many programs, all compromising its resources, overloads its operating power. The more taxed the system becomes the less able it is to function on a whole. Up pops the hourglass or “wheel of doom,” spinning round and round. This is if, of course, the system doesn't crash and need an entire reboot.The taxing effects of chronic pain leave few capacities and internal resources for patients to assert themselves in medical settings, especially when receiving much-needed care is at risk. Patients, already feeling alone and afraid, are often assigned this loaded label of "chronic" (and/or "pain syndrome" or "pain disorder") with little or no comprehensible information about what chronic pain entails, making it difficult to even know what kind of support to seek. Though the understanding of pain as a multidimensional, multi-factorial experience continues to evolve within medical establishments and public perception, acknowledgement of the seriousness of pain (pathophysiologically and practically) and treatments continues to lag despite research and evidence-based studies.The wide variation of how chronic pain diseases and illnesses present, the range of conditions and/or impairments and the label or diagnoses of "chronic pain" being used indiscriminately are all factors that make it easy for chronic pain disease to not receive the credibility or legitimacy of many other diseases. At the center of what makes "invisible" conditions like chronic pain disease and illness so excruciating is the emotional upheaval caused by the isolation, stress, stigma and lack of understanding; a sense of purpose, belonging, compassionate acknowledgment and support are further eroded by shame. In the absence of negative messages, there largely exists an overwhelming silence and neglect of resources for people in pain to be heard and recognized.I vehemently believe that de-stigmatizing chronic pain should be at the forefront of social, political and personal awareness. To institute widespread change it is imperative that individuals and communities step up to challenge assumptions and expand the context in which conversations about pain are being had. Pain must be claimed as a multidimensional human rights and social justice issue, not just a medical condition. I believe that truly influencing better support of people in pain requires that individuals and institutions alike make conscious choices to change how pain, and people in pain, are regarded.This is my passion and my mission: to elevate consciousness about chronic pain as a social justice issue, and to promote tools/resources to Unshame & Reclaim Pain!Will you join me?
- You can begin right now by making a commitment to yourself to speak up about your own pain (anatomical, emotional, social, and spiritual).
- You can also pledge to continue developing your understanding of pain and acknowledge the pain of others. Choose to engage in learning about pain, whatever that means for you!
Don't forget, you can always make a much appreciated donation. Donate Now: your support makes a difference!Thank you for caring about people in pain—like me.Join the email list (on the right-hand menu) and follow me on Facebook to receive future articles and news. Now, for the quiz answers you’ve been waiting for:
- There is a single pain center in the brain (F)
- Anatomical pain and emotional pain is processed in much the same way in the brain (T)
- Depression is a form of chronic pain (T)
- Chronic pain is acute pain that is persistent (F)
- The mind and the body function separately (F)
- Perception of pain functions in the same way regardless of "type" of pain (anatomical, emotional, social, spiritual) (T)
- All people have the same level of pain sensitivity (F)
- Chronic pain is its own disease process (T)
- Pain sensitivity is set by predetermined factors and cannot change over a person’s life (F)
- Predisposition to pain sensitivity is not a person’s choice (T)
- If no "physical" rationale is apparent for a person's pain it is therefore "mental" (F)
- Decreasing pain sensitivity is simply a matter of changing our perceptions (F)