In our 2018 Blood Cancer In America survey, people living with blood cancer shared their perspective on how the condition has impacted their life. Survey results indicated that blood cancer affects all areas of quality of life, including functional, emotional, social, and physical well-being.
Several questions in the survey focused on the emotional well-being of the individual. Survey participants were asked to describe blood cancer in one word, as well as rating how much different aspects of their life are impacted by having blood cancer. Not surprisingly, the emotional well-being of people with blood cancer is impacted by depression and the fear of their condition worsening.
When survey respondents were asked how the statement “I worry that my condition will get worse” relates to their current experience, 17% said it applies quite a bit and 5% said the statement very much applies to them. For the statement “I feel sad,” 13% said this applies quite a bit and 5% said very much. Another 32% strongly agreed with the statement “I am scared of what the future has in store for me.” These results speak to the significant emotional strain blood cancer and its treatment have.
The many worries
Blood cancer and its treatment can spark a number of worries. Twenty-nine percent of survey respondents strongly agreed that they are worried about infertility. Many treatments for blood cancer can impact a person’s fertility. While not everyone wants to have children, most want to have the choice. There are ways to preserve fertility options, but many of these must be done prior to starting treatment.
When starting a new relationship, 22% said they weren’t sure how to talk about their diagnosis. It can be difficult to know when and how to bring up cancer, especially into a new relationship.
Seventeen percent of survey respondents admitted they’ve lost their self-confidence since being diagnosed with blood cancer. The diagnosis, treatment and its side effects, and dealing with the emotional turmoil of having cancer can significantly impact someone’s sense of self. As one participant shared, “The mental aspect of having cancer really screws with your mind.”
Perhaps the scariest part of having blood cancer is not knowing how it will impact the future. Thirty-two percent of survey respondents agreed that they are scared of what the future has in store for them. As one person said, “You never know when the other shoe will drop.”
Living with blood cancer – from diagnosis, through treatment, and even in remission – can be emotionally draining. Connecting with others who understand what you’re going through can help you feel less alone and provide support for the tough times.