by Karen Kiefer, MSN, APN, NP-C, RN-BC, Kay-Diene Robinson, MPH, CHW, and Micke A. Brown, BSN, RN
The coexistence of pain and suffering might be considered a taboo subject to many, although the two are seen as different, they impact each other. Because of this, The Pain Community (TPC) is launching a campaign focusing on pain and suffering. We recognize that pain may be due to different conditions though described in similar ways. We also know that the pain intersects with suffering. Thus, in order to relieve pain, suffering must be addressed.
Effects of suffering
“Suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick” (Cassell, 1982).
“The most disturbing features of human experience emerge in suffering. For not only do we suffer, but we do so in unique ways. Although other animals experience pain, we alone question the pain.”(DF Duclow, 1988).
Suffering magnifies pain and may increase the intensity, length, and experience. Suffering is not isolated to the person experiencing the pain but extends to the caregivers, care-partners, family, friends and others. Suffering knows no age, gender, race, ethnicity, or belief system.
There are many layers to suffering. There are spiritual beliefs, such as persecution for previous “sins”, atonement for others, or the need to suffer to attain a higher spiritual place or plane. There are some belief systems that embrace pain as an obligation, journey, or something to strive towards. TPC does not discredit the belief systems of others, rather it recognizes its value to the individual.
The fear of pain and its consequences leads to suffering. Pain may spark the fear that connects pain with death, thereby increasing suffering. Many fear dying alone, not being forgiven by loved ones for past transgressions or even placing a heavy burden or financial hardship on those around us. This leads to isolation, despair, and hopelessness.
TPC recognizes the stigma of those living with pain. Stigma, bias and prejudice intensify suffering as people with pain are continually disbelieved or judged. The face of stigma, bias and prejudice are seen as discrimination towards race, gender, sexual identification, or ethnicity. It results in feeling less valued than others therefore not important, not a priority, invisible.
The degree of helplessness and hopelessness extends to the individual affected by pain as well as those surrounding them. Suffering magnifies when a loved one or caregiver watches those in pain and feels helpless to change the situation. This also occurs when the caregiver feels guilty for feeling overwhelmed, angry, or robbed of a “normal” life. This is also a reflection of how the person with pain feels.
Addressing Suffering
Therefore, we at TPC, have dedicated this year to pain and suffering. Together we wish to explore our innermost experiences as an attempt to improve the lives of those living with pain. We may experience pain, but it is our mission to reduce suffering and therefore provide a better quality of life.
Let’s take the TPC challenge for 2021-2022. As we move forward, TPC will explore the role of pain and suffering by:
- Highlighting and discussing various diseases/conditions
- Exploring the effects on suffering as it relates to:
- Financial challenges
- Discrimination and bias within healthcare
- Cultural and spiritual impact
- Psychosocial burden of the person with pain and their caregivers
- Outside influences,
We invite you to join this adventure in these ways:
- Share the features we are posting
- Comment with your impressions on the postings
- Share our posts with others: family, friends, healthcare providers & others
- Create your own posting on our blogs & chat rooms
- Upload audio/video clips highlighting your personal experiences with pain and suffering
- Invite your care-partners to participate in our forums
- Invite your healthcare team to read and post their impressions & experiences.
As TPC explores this topic, we recognize that the sensitivity of this conversation which may trigger strong emotions and unpleasant memories from some of our readers. We wish to share supportive resources to serve as further assistance to others.
- National Suicide Prevention Lifeline (also affiliated with Mental Health America): (800) 273-TALK (8255). Available any time of day or night, 365 days a year, this toll-free PTSD helpline has trained volunteers standing by to provide crisis intervention, to offer support for people in distress, and to give information and referrals to people with PTSD and their loved ones.
- Veterans Crisis Line: (800) 273-TALK (8255) and press “1”. This toll-free hotline is available for veterans and their loved ones. You can also send a text message to 838255 to receive confidential, free support and referrals.
- Crisis Text Line: Text HOME to 741741. This service is available 24/7 and provides free crisis support and information via text.
- National Hopeline Network: (800) 442-HOPE (4673). Available 365 days a year, volunteers who staff this toll-free hotline are specially trained in crisis intervention to provide support, information, and referrals to people in need. You can also access services via chat by pressing the “Chat Now” button on its website.
- PTSD Foundation of America, Veteran Line: (877) 717-PTSD (7873). Providing referrals, information, and helpful resources to veterans and their families, this toll-free hotline is available 24/7.
- Lifeline for Vets: (888) 777-4443. Also geared toward veterans and their families, this toll-free PTSD helpline provides crisis intervention, referrals, and information.
(Resource: https://www.psychguides.com/guides/ptsd-hotline/)