When dealing with chronic disease or cancer, you walk a fine line between the past and a new emerging future.
Looking backward, you can see everything illness has taken from you or has forced you to relinquish. Ultimately, there’s no going back to the past, and the future is uncertain. Looking forward, you can’t see anything quite clearly (Jackson, 2014).
All you have is the present. We will elaborate on the importance of “this present moment” at the end of this article.
The Stages of Grief in Chronic Disease may Remain A Hidden Problem
Because of chronic disease or cancer you might find yourself in a seemingly hopeless situation where you may experience anger, resentment, or denial. Feeling like this is normal for your situation and expected. You are after all mourning the loss of what your life was like before chronic disease or cancer.
As you experience the ups and downs of chronic illness, you may experience many losses, the first and most obvious is the loss of good health and wellness. This first loss can kick-start a flow of so-called network losses (Jackson, 2014).
Contingent on your chronic disease, losses may include a loss of comfort, cognitive function, and mental health. These initial losses may be accompanied by loss of your career, income, self-efficacy, freedom, intimacy, self-esteem, self-control, independence, hope, dignity, certainty, as well as other losses.
Although, many health care providers will probably recognize the losses you are experiencing, unfortunately, they probably will be unable to spend the time it takes to discuss your grief and sorrow with you. Interestingly enough, many ill people fail to realize that the anger, denial, depression, or guilt they experience may be manifestations of complicated grief.
Because of that, persons often don’t seek support either because they are unaware that grief counseling for chronic disease is available, or people do not know how to ask to deal with grief (Jackson, 2014). Unfortunately, counseling or seeking grief support services is still stigmatized. Many times you may feel like you are weak or crazy for needing emotional support.
Pride may make you reluctant to ask for help. Friends and family, if they want to or not, are thrown into this ongoing grief process. Constantly reminded of how their lives were before and have changed, and how you used to be, they are in as much need of grief support and help as you who has the illness, disability, chronic disease or cancer (Jackson, 2014).
Grief Definition of Terms
For our purpose, grief is defined here as the primary emotional/affective process of reacting to the loss of a loved one or loss of quality of life due to chronic illness. Grief reactions can also be viewed as abnormal, traumatic, pathologic, or complicated (National Cancer Institute, 2014).
Bereavement is defined as the objective situation you face after having lost an important person via death (National Cancer Institute, 2014).
Mourning is defined as your public display of grief. While grief focuses more on your internal or intrapsychic experience of loss, mourning emphasizes your external or public expressions of grief. Consequently, mourning is influenced by your beliefs, religious practices, and cultural context (National Cancer Institute, 2014).
Types of Grief Reactions
Anticipatory grief refers to a grief reaction that occurs in anticipation of an impending loss. According to the National Cancer Institute (2014), anticipatory grief is the subject of much concern and controversy.
Normal Grief or the 4 Stages of Grief Model
A more recent stage model of normal grief organizes your psychological responses to grief and loss into four stages (National Cancer Institute, 2014):
- Separation distress
It is important to emphasize that the idea that grief unfolds in regular phases is an oversimplification of the highly complex personal waxing and waning of your emotional process (National Cancer Institute, 2014).
Patterns of Complicated Grief
Empirical reviews emphasize the possibility that complicated grief patterns are better explained as forms of your resilience and strength. In complicated grief, four of the eight following symptoms are experienced at least daily or to a marked degree (National Cancer Institute, 2014):
- Purposelessness or feelings of futility about the future
- A subjective sense of numbness, detachment, or absence of emotional responsiveness
- Difficulty in acknowledging the death of a loved one (e.g., disbelief)
- Feeling that life is empty or meaningless
- Feeling that part of oneself has died
- Shattered worldview (e.g., lost a sense of security, trust, control)
- Assumption of symptoms or harmful behaviors of, or related to a deceased person
- Excessive irritability, bitterness, or anger
In addition to these complicated grief symptoms:
- The disturbance (symptoms listed above) must endure for at least six months.
- The disturbance causes significant impairment in social, occupational, or other important areas of functioning.
Infinite Losses or Perpetual Complicated Grief
If you are dealing with the loss of body function or body parts, activities of daily living can be greatly diminished. Such a loss of function, made worse by the loss of status or identity, may shrink your self-esteem and shatter your body image, and promote anxiety and depression. Since chronic disease can chisel away main characteristics that form your identity including potential loss of livelihood, the entirety of the losses could be enormous (Jackson, 2014).
Thus, you may find yourself in a situation where you live with perpetual complicated grief, known as chronic sorrow or sadness. The most prominent part of perpetual grief is the fear of pain, disability, recurrence, and death (Jackson, 2014).
Chronic illness can put an enormous strain on your relationships also, where it is not uncommon for the well partner to become the caregivers. Caregiving can generate an imbalance in roles, which can ripple further throughout the family, affecting the dynamics of your relationship or your family system (Jackson, 2014).
While not pleasant, acute or terminal illness have an end, chronic disease, however, has no end. The grief associated with chronic disease might be very complex for you. For you and many people with chronic illness, the losses are multiple and permanent. Because these losses are unending and difficult to resolve, they are also known as infinite losses (Jackson, 2014).
Infinite losses, because of their constant and unrelenting nature, can put you in a state of grieving over and over. You might be very aware of this reality. You may be unable to reach a place of acceptance because you don’t always have a chance to finish the grieving process. Thus, the grieving process is dragged out, and it becomes complicated (Jackson, 2014).
How to Deal with Grief?
There is not one answer for everyone. Providing highly individualized care is the priority. A first step could be a referral to practitioners who specialize in grief counseling associated with chronic illness (Jackson, 2014).
Many times you may just want another person to listen and to understand what you are going through. This aspect of care often gets lost in translation, especially in the hospital setting. Ideally, complete psychosocial assessments on all patients should be performed. There are inventories and scales to assess various symptoms. The Beck Depression Inventory or the Cross-Cutting Symptom Measure checklist are only two such examples (Jackson, 2014).
Some of the interventions available could be a support group for your specific illness. Other interventions can include individual, family, and couples counseling to target grief and loss from the chronic disease. A good place to start is to find what is working for you and what is not. It is vital to help you reinforce what is positive for you, and offer a safe haven to let you cry and vent and where you are not judged or placated for having feelings of grief (Jackson, 2014).
Many times, emphasizing what you can do to find new interests, structures, and routines could help you. This in turn can help give you new coping skills and outlets for your feelings and emotions. This is important. Because learning new coping skills will help you not only to learn and accept the losses and limitations of chronic disease, but also allow you to transform your experience into something livable and bearable (Jackson, 2014).
For example, a soldier who lost a limb can be aided to accept a prosthesis. Through this acceptance, this soldier might develop skills to help other soldiers manage their wounds and injuries. An ice skater, which, as a result of injury will never skate again, could unearth a long-repressed aspiration to be a novelist. The emphasis cannot be on what was, but on what can still be (Jackson, 2014).
Becoming Aware of Grief and Loss
While you need to attend to chronic disease right away medically, think about what having this disease means to you. It can be important to pinpoint elements that you feel you have lost as a result of chronic disease.
Feelings, such as irritability, restlessness, and being more quiet than usual can be expressed in many ways. Your illness can throw you into a full-blown existential crisis, questioning the significance and purpose of your loss (Absenger, 2014).
Chronic disease and cancer will test your beliefs about life, death, meaning, and your sense of place in the world. In short, the very foundation upon which you built your entire life is challenged and crumbling at your feet (Absenger, 2014).
Coping with Grief
In the best situations, health care providers are both guides and collaborators on your illness journey. Evidence-based mindfulness exercises can help you chart a new course and allow you to navigate the rough waters and harsh landscape of chronic disease and cancer (Absenger 2014).
How Can Mindfulness Help?
Mindfulness exercises can address many of the grief and loss issues, as well as the physical issues that go with your chronic disease. Interestingly enough, mindfulness exercises are moldable to many chronic disease circumstances (Carlson, 2012; Sagula & Rice, 2004; Tacón, 2011; Veehof, Oskam, Schreurs, & Bohlmeijer, 2011).
Mindfulness meditation’s premise is to teach you that the only certainty in life is change. This realization can be at times more empowering for patients who are desperately and often frantically trying to fix things. At times, the best thing to do to solve a problem is nothing at all and to just slow down and try to see things as they are.
Mindfulness exercises can help you learn that the powerful emotions and sensations you are dealing with, along the grief and loss due to chronic disease and cancer can be transformative (Carlson, 2012; Sagula & Rice, 2004; Tacón, 2011; Veehof, Oskam, Schreurs, & Bohlmeijer, 2011).
With mindfulness meditation, you can learn that although specific symptoms are unpleasant, that they too are constantly in flux. Thus, mindfulness exercises can help you make chronic disease symptoms tolerable, which can provide further liberation from suffering. Mindfulness meditation changes your situation through training the mind through formal mindfulness techniques.
Mindfulness exercises bring about a shift in attitude and perspective that allows you to see chronic disease through a different lens; a lens that will not allow fear to drive your behavior and consume you (Carlson, 2012; Sagula & Rice, 2004; Tacón, 2011; Veehof, Oskam, Schreurs, & Bohlmeijer, 2011).
In theory then, while suffering from a chronic illness, you practice mindfulness to improve your emotion regulation strategies. Mindfulness meditation can probably help you to engage in less experiential avoidance of difficult feelings and situations, ruminate less on the past and worry less about the future (Carlson, 2012; Sagula & Rice, 2004; Tacón, 2011; Veehof, Oskam, Schreurs, & Bohlmeijer, 2011).
Mindfulness exercises such as yoga, meditation and qigong allow you to learn being present, in moment-to-moment, nonjudgmental awareness. These mindfulness exercises allow you to change the way you engage with your inner experience. This change in engagement with your inner experience decreases specific chronic disease symptoms and brings about improvements in a broad range of psychological outcomes (Carlson, 2012; Sagula & Rice, 2004; Tacón, 2011; Veehof, Oskam, Schreurs, & Bohlmeijer, 2011).
Mindfulness Exercises in Modeling Role-Modeling
As people grow older with chronic disease, they have unique, multi-dimensional, and interrelated needs that are underexplored. Moreover, these needs are often unmet, even though these needs could be addressed with mindfulness exercises (Haylock, 2010).
Health care professional need to be able to assess and intervene to meet your needs while living with chronic disease. A holistic, mindfulness approach can promote health, wellness, and healing while you are dealing with infinite losses and perpetual complicated grief brought about by chronic disease (Haylock, 2010).
As depicted in Figure 2 above, our approach to didactic and experiential education facilitates and empowers you to incorporate evidence based self-care.
When you attend ACEF’s classes and mindfulness exercises, we will give you strategies that help you deal effectively with the challenges living with chronic disease and cancer entails.
What do you find most difficult or most confusing or interesting about mindfulness exercises and dealing with loss and/or grief in chronic disease?
If you don’t find anything confusing or interesting what do you wonder about mindfulness exercises and dealing with loss and/or grief in chronic disease?
The Absenger Cancer Education Foundation (ACEF) is a 501(c)(3) public charity. Your gift may qualify as a charitable deduction for federal income tax purposes. Please consult with your tax adviser or the IRS to determine whether your contribution is deductible.
Absenger, W. (2014, November 10). Being whole again in cancer survivorship | ACEF. Retrieved from http://amacf.org/art-living-charting-journey-whole-cancer- survivorship/
Carlson, L. E. (2012). Mindfulness-based interventions for physical conditions: A narrative review evaluating levels of evidence. ISRN Psychiatry, 2012, 1–21. http://doi.org/10.5402/2012/651583
Haylock, P. J. (2010). Advanced cancer: A mind-body-spirit approach to life and living. Seminars in Oncology Nursing, 26(3), 183–194. http://www.ncbi.nlm.nih.gov/pubmed/20656142
Jackson, K. (2014). Grieving chronic illness and injury: Infinite losses. Social Work Today, 14(4), 18. Retrieved from http://www.socialworktoday.com/archive/070714p18.shtml
National Cancer Institute. (2014, October 8). PDQ® grief, bereavement, and coping with loss. National Cancer Institute. Retrieved from http://www.cancer.gov/cancertopics/pdq/supportivecare/bereavement/patient
Sagula, D., & Rice, K. G. (2004). The effectiveness of mindfulness training on the grieving process and emotional well-being of chronic pain patients. Journal of Clinical Psychology in Medical Settings, 11(4), 333–342. doi: 10.1023/B:JOCS.0000045353.78755.51
Tacón, A. M. (2011). Mindfulness: Existential loss and grief factors in women with breast cancer. Journal of Psychosocial Oncology, 29(6), 643–656. doi: 10.1080/07347332.2011.615382
Veehof, M. M., Oskam, M.-J., Schreurs, K. M. G., & Bohlmeijer, E. T. (2011). Acceptance-based interventions for the treatment of chronic pain: A systematic review and meta-analysis: Pain, 152(3), 533–542. doi: 10.1016/j.pain.2010.11.002
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