Frankly Speaking About Cancer: Why Can’t I Stay Positive Program Summary

-Liz Hiles

Kelly Hendershot, LGSW, LMSW, and Senior Director of Partner Support with Cancer Support Community, joined the Gryt Health Mental Health Series for the third part of the series on May 19th to talk about how attitude affects our physical health. Kelly shared that she knows from personal experience just how much cancer can affect individuals and families. Working in the cancer community has become a passion after losing her husband to cancer 13 years ago. 

Kelly discussed some of the findings from the Cancer Support Community’s Cancer Experience Registry. The results shared were from their 2020 data report. She discussed a variety of emotions and universal challenges that can come up throughout an individual’s cancer experience. Many of those resonated with the attendees. Some of the biggest concerns were eating and nutrition, fear of recurrence, and worrying about the future and what lies ahead. 

The data shows that 49% of respondents are at clinically significant levels for anxiety and 38% clinically significant levels for depression. So, if you think you’re the only one dealing with anxiety and depression since being diagnosed with cancer, know that you are NOT alone! Kelly explained that Cancer Support Community’s Gilda’s Club offers psychosocial support and focuses on the mental health of anyone impacted by a cancer diagnosis. To find your local Gilda’s Club Chapter, go here

Most people are not prepared to deal with a cancer diagnosis – as a patient or a caregiver. Kelly shared that she was extremely unprepared to jump into the role of caregiver for her terminally ill husband at the age of 27. She didn’t know what she was doing with her life, let alone someone else’s. 

One silver lining about the COVID-19 pandemic is that the isolation people experienced has brought mental health wellness to the forefront. People are addressing the stigma that has previously been associated with discussing mental health openly. 

Still, if your mental health wellness is depleted or goes unacknowledged, you can quickly deplete your own resources that you need to either heal or take care of the person healing. There are many common triggers that can trigger anxiety and depression. Any of those can deplete your personal resources and energy reserves. 

Some levels of distress are normal. Everyone experiences stress. However, about a third of cancer patients report that they experience significant levels of distress. Only about 5% obtain a psychological health provider to help them cope with their distress. 

Gilda’s Club has a Distress Screener that helps identify people who are at risk. It is not to be used as a clinical diagnosis. It is a way for individuals to discern if they are at risk for anxiety and depression so that they can seek the appropriate mental health provider. 

There is a burden when support can become overly positive. This is also sometimes known as Pollyanna Syndrome. Pollyanna Syndrome, the name being taken from a book and movie of the same title, means “an excessively or blindly optimistic person.” It is natural to have highs and lows regardless of what you’re going through in life. Being positive all the time is not helpful or healthy. It can very well be detrimental even. 

When Kelly’s husband died, people tried to get her into a positive frame of mind by telling her that he was in a better place. Most people do not find that helpful at all. For Kelly, she needed to be allowed to feel powerless and grieve the loss of her husband. 

Based on a study with non-small cell lung carcinoma patients, there is no evidence that a high level of optimism prior to treatment enhances survival in patients. However, it has been proven that encouraging patients to only be positive can actually add to their burden, anxiety, and distress. It also creates a belief that ranges of emotions are not acceptable. It is powerful for people to express and put a name to feelings. We should be normalizing that. 

Special thanks to Paola Palmieri for the yoga photo. Yoga is a great way to practice self-care and contributes to better mental health.

Depression, Kelly explained, is not measured. If an individual is experiencing five or more symptoms during a two-week period and at least of these symptoms is either depressed mood or loss of interest or pleasure in all or most of your days, if you’ve had significant weight loss or gain not due to dieting, if you’ve had changes in your appetite, you very well may be depressed. 

You may also notice fatigue, or loss of energy, nearly daily.  You could have feelings of worthlessness or excessive or inappropriate guilty feelings and the inability to think or concentrate. If you’re an indecisive person, to begin with, these things can make it so that you can’t function. You could have recurrent thoughts or even recurrent suicidal ideation, thinking that things would be better off if you were gone. (Spoiler: This is never true!)

Any of these symptoms are signs that you could be clinically depressed. These symptoms can cause an individual’s distress or impairment in social, occupational, or other areas of their life. Although depression can lead to substance abuse, these symptoms are generally not the result of substance abuse. 

Note that it is normal to experience any of these symptoms while your life is being impacted by cancer. It is always a good idea to talk with a professional before you get to the point where you cannot function in your life. 

If you are experiencing any of these symptoms for a prolonged period of time, you could be experiencing a major depressive episode. Other symptoms can be, feeling sad, hopeless, irritable, worthless, extremely down, crying frequently for no apparent reason, insomnia, hypersomnia, sexual difficulties and desire, physical pain without cause, and intense feelings of overwhelm. 

Approximately one-third of cancer patients report a mood disorder at some point after their diagnosis. Within one year of diagnosis, this poses a greater threat. Ten to twenty percent of cancer patients report depression and anxiety after the initial stress of a diagnosis or recurrence. 

Depression can also impact adherence to cancer treatment – remembering to take medications or attend follow-up appointments. 

What we know for sure is that depression is treatable. There are a number of different strategies that you can use in lieu of or in addition to medications. Some of these include relaxation techniques, breathing exercises, psychoeducation, Cognitive Behavioral Therapy (CBT), problem-solving therapy, PTSD, and Acceptance and Commitment Therapy (ACT). 

It is important to note that some medications may not be available to you while you are in active cancer treatment. You should always discuss the options with your oncologist. You can also request your mental health professional to consult with them as well. 

More than half of cancer patients and survivors report fatigue as an ongoing issue. A larger number of survivors continue to struggle with pain and isolation after their diagnosis. 

There are many different types of grief. One is called Living with Loss. This represents how we may experience ongoing or chronic sorrow. It is the space between what is and what could have been. It captures how you thought you’d be spending your life versus the reality that you are living, and places you at a fork in the road. 

Cancer shifts the trajectory that you had in mind for your life. It creates a sense of loss – loss of health, lifestyle, independence (even if temporary), and possibly even organs, careers, and fertility, among other things. These losses may contribute to feelings of being stuck. You need to take time to grieve each of these things. Even if you don’t do this publicly, it is important to acknowledge the feelings and find a way to have them validated. Do not brush them off or minimize them.

Most people who have not experienced cancer do not understand why cancer patients experience grief. It is important to have the people around you who will not cause you to feel invalidated about what you are experiencing. Often these actions are unintended, so it’s important to address them as it happens and let people know those comments are unhelpful. If these issues are not addressed, we can often internalize the inappropriate thoughts and feelings imposed by others, which causes further emotional and sometimes physical harm.

Another type of grief is complicated grief. Complicated grief is when the usual feelings of loss and bereavement are debilitating and don’t improve even after time passes. If you are experiencing tremendous, daily, debilitating grief for more than one year, you may be experiencing complicated grief and may need to consult a mental health professional.

Then there’s hope. Hope is not wishful thinking about a health condition. Hope is adjusted and adapted over time. Hope can come in the form of self-compassion, self-care, finding meaning in life, acknowledgment of what’s happening with the absence of avoidance, reducing isolation, and cultivating resilience. It is a gradual shift in perspective. 

Gryt Team Member, Liz on a day when she was grieving. Sometimes you just gotta curl up and let the emotions flow.

Think about the following questions:

  • What or who are you grieving in this moment?
  •  How can you acknowledge and honor your grief?

Building your resilience refers to an individual’s protected attributes and/or personal characteristics, which are thought to be modifiable, and to promote the successful adaptation of life meaning, sense of coherence, self-esteem, self-efficacy, cognitive flexibility, coping, social support, and spirituality. It is not something that happens overnight, it is an ongoing process that happens over time. It is the process of adapting to adversity. 

Kelly incorporated some breathing/relaxation techniques into her presentation as well, several times before moving on to a new section, she would pause and lead the group through a quick exercise.

Key Takeaways:

  • Distress and depression are treatable.
  • Resilience can be learned and strengthened over time.
  • Positive thinking is not the goal.
  • We want to learn about your feelings and needs.
  • Acknowledgment matters. 

If you would like to view the entire program, you can do so below. 

After the presentation ended, the recording was stopped and we had the opportunity to commune as a community. 

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View our resources for those who are experiencing, have experienced, or are supporting someone who has experienced a medical diagnosis.