As a Ph.D. with a focus in sport and exercise psychology (Kinesiology, Illinois, 1999), I naturally want to understand thought processes and emotions, and how they influence behavior. As a myeloma support group leader, I also participate in discussions with those on their myeloma pathway. And, as someone diagnosed with smoldering myeloma, I have evaluated (and constantly evaluate) my own pathway from a psychological perspective. This is natural for me, as this is life with a capital “L.” My Life is me — and how I view the world in the course of my pathway, or what I refer to as mindset, impacts my quality of life. It does for others, too. 

Sometimes, people feel like things happen to them and they have no control, while others perceive more control in their lives in spite of challenges faced. This can be likened to the phrase of a glass half-empty or half-full, but it goes beyond simple pessimism and optimism. In short, those who lack a sense of control tend to feel like a pawn, as they experience low self-esteem, loss of motivation, and shame. They also tend to shut others out and may also use a lot of comparison behaviors. 

In contrast, those who perceive more control act as orchestrators of life, regardless of current circumstances. Of course, unexpected and negative things happen, but they act through these things with a sense of involvement to determine their next best steps. Those with this mindset tend to persist more with health-related behaviors and have better mental health. And while they may listen to and learn from others’ experiences, they don’t engage in a lot of comparison. (Maybe you’ve heard the quote: “Comparison is the thief of joy.”)

With this orientation, I searched for ASH abstracts dealing with mental health. I found papers addressing:

  • psychological distress, prognostic awareness, and quality of life among patients and caregivers;
  • exploratory work assessing interest in lifestyle intervention for myeloma patients;
  • examination of depression, anxiety, and clinical trial perceptions among patients; 
  • impact of a digital life coach during autologous stem cell transplant; and 
  • financial toxicity and its effects on patients and families

Additionally, the iStopMM project reported that it will be assessing mental health longitudinally, and so that data will be highly anticipated in the years ahead. 

I found much of this work interesting, and my original intent was to detail these various papers and their findings. But as I write, I’m shifting perspective to more of an editorial nature. As I provided a summary of mindsets above, I have nagging thoughts about toxic positivity along with the roles distress and mental/emotional pain. I think we have to be aware of toxic positivity. This is the frame of mind where negative emotions are dismissed and people think that no matter what, “I must present a positive mindset.” It tries to push aside the difficult emotions, such as fear and sadness, and can be quite harmful to our mental health. 

In this Life, how can we help people who are in the midst of what for many is their toughest challenge? How can patients get to a mental space where they recognize and accept their challenge, and also hold a positive mental mindset that provides a healthy energy which helps them deal not only with day-to-day challenges, but also with something that endangers their way of life and, at times, even their existence?

For me, much of the answer is in rejecting toxic positivity and in embracing the full range of the emotional spectrum — from experiencing the high of highs to the low of lows, and being authentic and aware in these moments of life. Yes, in the low times, the heart hurts and feels like it’s breaking apart and is being torn out. We cannot deny these difficulties and must experience them. But how can we help others see that instead of breaking apart, the heart may actually be breaking open? Breaking open to new possibilities, new ways of being, deeper relationships, and a greater empathy as we move through our personal worlds. That in the midst of all the crap, there is something else there that can be used for good in the future. Maybe it’s not even an issue of the glass being half-full or half-empty — instead, it’s an issue of “now, what are you going to fill your glass with?”

Jessie Daw, on Twitter @Daw6Jessie