If you haven’t had a chance to watch any of Bill Meyer’s films about chronic illness, I definitely recommend doing so. Although many of them are older, they are helpful in gaining insight into chronic illness and ways to improve your quality of life following diagnosis. In my health psychology class last semester, I was fortunate enough to be introduced to his film Healing and the Mind: Healing from Within.
<p><a href=”https://vimeo.com/39767361″>Healing and the Mind – Healing from Within</a> from <a href=”https://vimeo.com/moyersandcompany”>BillMoyers.com</a> on <a href=”https://vimeo.com”>Vimeo</a>.</p>
In general, society expects chronic or terminal illness patients to remain strong in spite of their condition. The media alone has set an excessively high standard for those who are sick by portraying illness a challenge that can easily be overcome. For example, there are numerous stories in the news about a cancer patient that accomplished something extraordinary and everyone deems them a hero for overcoming the obstacles of their disease. However, you don’t typically see stories of the patients who spend weeks or months in the hospital, undergoing painful medical procedures or chemotherapy. You also don’t hear of the millions of patients still waiting for a diagnosis for this condition – which in my case, took over 20 years. As I mentioned earlier, there’s a shocking reality that follows chronic illness. As the Moyers (1999) mentions, “despite all the powerful weapons of modern medicine, many patients can’t be helped. Frustrated doctors are beginning to turn to alternatives” (Opening Scene).
According to the Centers for Disease Control and Prevention (CDC), nearly half of all adult (or 177 million people) are diagnosed with at least one chronic condition, with one out of every four of these patients diagnosed with two or more chronic illnesses or diseases, and account for nearly 48 percent of deaths in the United States. Unfortunately, many of these deaths are the result of suicide. Recent reports on chronic illness have found that depression is approximately 20% higher in those who are chronically ill, while “physical illness and uncontrollable physical pain are major factors in up to 70% of suicides” (Copen, 2016). Just as horrifying is the fact that chronic illness could happen to anyone at any time, despite taking cautions by practicing health behaviors. Essentially, chronic illness is a community – a community that doesn’t discriminate against its population and that any person can be forced into at any given time, often without prior consent. A popular saying within the chronic illness community is that “you don’t know until you know,” and that’s the truth. Nothing prepares you for the challenges of living with a chronic illness, both physically and emotionally.
It drives away social connections, with both family and friends alike, and you lose the connectedness you once had in the world. Chronic illness literally touches every part of your life and, ultimately, it changes who you are – who you think you should be. A serious diagnosis instantly can dissolve one’s hopes or dreams and any plans that they had for the future. It becomes impossible to simply plan for tomorrow because there is often little to no predictability when it comes to illness. Additionally, the experience of chronic illness is yours alone – leaving you to feel frightened and isolated, angry or depressed, and guilty for not doing more or being more. A patient in the film Healing and the Mind described it best by saying, “I just see things getting stripped away from all of us a lot of times. One thing after the other stripped away. Stripped away, stripped away. And then who or what is left?” (Moyers, 1999, Introduction to Dr. Spiegel’s New Experiment Scene). As a chronic illness patient myself, I can firmly attest to this reality. Somedays it’s hard not give up when you’re sick all the time because you’re constantly battling between both your body and your mind. It’s hard not to get discouraged, especially when your told there’s likely little hope for getting better – no pill to take the pain away, no doctor to stitch you back together. When clinical intervention is no longer an option, patients look for other ways to manage their condition.
Learning to adjust one’s life around chronic illness is often a major challenge following diagnosis and as Moyers (1999) mentions in his film, chronic illness patients are suffering; they’re looking for ways to manage the stress associated with their illness by regaining control once again. For instance, the first half of Healing and the Mind begins by reviewing a program initiated by Dr. Kabat-Zinns, which treats individuals diagnosed with a serious physical illness or disease through the use of mindfulness and meditation exercise. In an interview regarding the program, a colleague points out that Dr. Kabat-Zinn is well respected by most doctors in the hospital for his work in managing the psychological aspects of illness. Not just because his methods have proven to work, but mainly because Dr. Kabat-Zinn takes on the toughest patients that clinical medicine couldn’t help and teaches them to live with the pain. The most profound moment for me, however, was the scene where the doctor was teaching yoga and was explaining how to let go of feelings of stress or pain:
And you feel the pain. Then you just see… see if I can ride the waves of this sensation. And you watch the sensations come and go, and very often they will change. Noticing that you can uncouple the sensation from your thoughts about them. Like, this is killing me, it’s going to last forever, there’s nothing I’ll be able to do about it. And you learn to free yourself from those thoughts and realize those are just thoughts. And then it turns out there is an inner stillness and peace right within some of the most difficult life situations. If you can learn to be comfortable within the pain or within the anxiety, it’s going to change it completely. You’re not trying to make it go away…
What we’re doing is saying, actually move into the stress and begin to look at, look at the pain, look at what the mind’s reactions are. And you’re asking, ‘is this killing me right now, in this moment, is this killing me?’ The answer is very often, ‘No, it’s not, but my GOD if I have to live with this for 30 years…’ And then you say, ‘But wait a minute, the idea is just to be in the present moment, let’s just flow with this.’ And over a period of time, people learn to actually relate differently to the pain. (Moyers, 1999, Yoga Scene).
There’s no denying that the way we think or feel can greatly influence the physiological aspects of health. However, the amount of social support a person receives (or doesn’t receive) is also a determining factor in how one copes with chronic illness, especially in terms of quality of life. According to Gurung (2014), “empirical studies and reviews show that people with more social support have a more positive adjustment to chronic illness… Having a socially supportive environment often makes the patient more actively cope with the illness and less likely to disengage and get worse” (p. 316). While having a strong personal network of family or friends is important, and sometimes necessary for basic survival, many patients will turn to group support in order to better manage their condition.
Patients can benefit from support groups for a number of reasons. For starters, supports groups are designed to bring those with similar issues, such as chronic illness, together as a way to bond and share experiences. It’s a safe place where individuals don’t have to hide how they honestly feel. For example, [in talking about on his participant in the study on support groups] Spiegel states that “it’s interesting in reflecting back on how she [the patient] presented at the first meeting with this extremely extensive and well-developed support network that despite having all those people [the patient’s support group], there were things that she felt she couldn’t share with them, but started right off sharing in the group” (Moyers, 1999, Support Group Meeting Scene). Sometimes it’s easier to discuss illness with those who understand what you’re going through. Other times, it’s just hard to tell the people that you love that you’re scared, depressed, or in pain. Individuals affected by chronic illness typically feel guilty about their condition, or that they even became sick in the first place, and they don’t want to be a burden to their family or friends. As one patient’s studied in the film stated, “I think we put on a big front for the people around us” (Moyers, 1999). Likewise, these patients can also feel that it is necessary to hide the signs of their illness to avoid the discrimination that’s become common in modern society, which views chronic illness as a form of weakness. Ultimately, it’s easier to find comfort in those you know won’t judge you for your condition.
Aside from the above, there are other benefits from finding support from a group, many of which were shown throughout the film. For example, one of the main types of social support comes from gaining informational support. Belonging to a support group provides a place to share or gain information about a particular condition or disease, such as sharing personal experiences, discussing treatment options, and exchanging tips or trick that may help to alleviate symptoms. Also, it helps to see what others are going through or to know that you aren’t the only one who has gone through this experience. Likewise, meeting others like you can often put things into perspective. For instance, if others appear to be worse off than you, it makes you be thankful for your situation. Alternately, if they have achieved recovery or appear to be doing better than you, it can give you hope that life won’t always be this way. It can also help in bringing understanding for setting expectations for the future in terms of living with chronic illness. More importantly, though, support groups create a group dynamic based on a common history. Being part of a group provides inclusion to something bigger and more profound; something outside of the self. It allows for a sense of belonging to the human race once again (Moyers, 1999).
One of the scariest parts of being sick is not knowing what is going to happen in the future. It’s also hard to explain how someone could feel alone with their illness, despite having a number of friends and family in their life. More times than not, individuals with a chronic illness feel segregated because of their illness or feel pressure to do more because of the pressure placed on them to live a normal life in spite of their conditions. Although family and friends are an essential element of one’s ability to cope with chronic illness, as you mentioned they can also create further problems or distress handing disease. Similarly, individuals who do not have a strong support network can also struggle to cope on their own, which makes access to support groups crucial to physiological and psychological well-being following a diagnosis of chronic or terminal illness.
There is a grieving process that coincides with illness, although this is a crucial part of coping with a chronic or terminal disease. According to Absenger (2015), grief in terms of illness is defined 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” (para. 9). The grieving process for chronic illness is similar as it is for those who are bereaving over a loved one, consisting of 5 Stages of Grief in Illness:
- Shock and Denial: When an individual first receives a diagnosis, they often go into a state of shock or numbness, unable to process what the doctor has said. As Absenger (2015) mentions, patients experience a “subjective sense of numbness, detachment, or absence of emotional responsiveness” (para. 15). Likewise, you try to avoid coping with the reality of a diagnosis by simply ignoring the problem.
- “This isn’t really happening to me.”
- “The doctors must be wrong; I am not sick.”
- “I’m fine, everything is fine.”
- Anger: When a person can no longer deny the inevitable, one can often feel anger or bitterness towards their illness.
- “What did I do to deserve this?
- “Life is so unfair!”
- “Why me? “
- “I am sick and tired of always being sick and tired!”
- Bargaining: They want to understand why this happened and become desperate to find a way to fix themselves. They believe if they make deals that they alter the outcome of their illness.
- “God, if you make this go away, I promise to…”
- “I’m willing to try anything to feel better.”
- “I should get a second opinion. Maybe they will tell me something different.”
- Depression: When bargaining doesn’t work, sadness begins.
- “My life isn’t worth living.”
- “I don’t know who I am anymore.”
- “How am going to afford to live?
- “I won’t ever be able to afford these medical bills.”
- “What’s going to happen to me?”
- “I can’t do this anymore… I give up!”
- Acceptance: This is the most important stage in illness because patients are able to live with their condition. According to Absenger (2015), “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” (para. 23).
- “I can cope with whatever life throws at me.”
- “I will try to live the best life that I can.”
- “No matter what happens, I’ll be okay.”
When you’re going through the stages of grief, it almost feels silly or selfish to mourn the loss of yourself. Ultimately, though, it may be the only way to get over the heartbreak of diagnosis and prepare oneself to cope with illness or disease.
As we saw throughout the film Healing and the Mind, learning to adapt and accept the pain of illness is essential in both healing and regaining control of life. As Dr. Jon Kabat-Zinn mentions during a group discussion on mindfulness, “if you hope to really grow in strength and wisdom, and bring healing into your life, you have to come to the realization that this moment is precious. And not only precious, but it’s wonderful, even if you’re in pain at this moment. Now that takes a certain amount of courage to do” (Moyers, 1999, Group Discussion on Mindfulness Scene).
Absenger, W. (2015). Mindfulness and the Stages of Grief in Chronic Disease. Retrieved on February 23, 2016, from http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/
Centers for Disease Control and Prevention (2016). Chronic Diseases: The Leading Causes of Death and Disability in the United States. Retrieved on February 22, 2016, from http://www.cdc.gov/chronicdisease/overview/
Copen, L. (2016). Information and Statistics About Invisible Illnesses and Visible Diseases. Retrieved on February 22, 2016, from http://invisibleillnessweek.com/media-toolkit/statistics/
Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.
Moyers, B. (1999). Healing and the Mind – Healing from Within . Retrieved from http://vimeo.com/39767361