Asking for Help: Addressing Emotional CLL Needs

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Topics include: Living Well and Understanding

The psychological effects of life with chronic lymphocytic leukemia (CLL) can be stressful, but there are resources available to help patients. Watch now to hear licensed clinical social worker Susan Ash-Lee, from the Rocky Mountain Cancer Center, as she shares how patients can take control of their mental health and be their own best advocate.

This program was made possible by Pharmacyclics LLC and Janssen Biotech, Inc. Produced in partnership with Rocky Mountain Cancer Centers.

Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Jeff Folloder:

Susan, I’m going to shift just a little bit here. CLL is the cancer. The treatment has its own host of problems. We’ve got the physical environment of dealing with cancer. From what I’ve seen over the last couple of years, it’s almost like the unspoken part of the cancer is the mental health aspect of it. Let’s talk about how CLL patients can access help for their anxiety, for their depression, for their concerns. It’s a tough thing for somebody to say I need help. 

How do patients do that? How do they start that conversation with their team?

Susan Ash-Lee:  

Living with uncertainty is hard, and so sometimes it is just letting someone on your cancer team know what you’re experiencing. I’m feeling afraid, and I’m not sure that’s normal. I worry a lot, or my wife tells me I’m worried a lot, or maybe my husband is telling me I worry a lot. So at first it’s just asking is there someone I can talk to about how I’m feeling, because then that leads us to approach what your concerns are from a real holistic perspective.

We want to know are you sleeping well at night, because if you’re not sleeping well at night, you’re probably not going to feel very psychologically prepared to meet the day, either. So we look at you from a whole patient perspective, and we also look at your family as well, how they’re coping.

So number one is just asking who is on the team that I can talk to about this. At many cancer centers you’re also taking some screening tools where they’re asking about your distress and about your concerns. And so sometimes we will reach out, too, even prior to you telling us you need some help. We will do outreach first and say we see that you’re a little concerned about these things; can we bring you in and talk to you more fully about it?

Jeff Folloder:     

Mental health resources, without getting to political, seem like they get the short shrift in medical care. And it shouldn't be that way. It’s been my experience that patients who take an active role in their own care, who embrace the problems that they have and seek help tend to have better outcome. Is that a fair statement?

Susan Ash-Lee:  

Yeah, I think even those folks that are really taking control of their healthcare will experience the grief of illness.

And so it doesn’t mean that you are not coping well. It means that it’s very human to grieve the loss of your health and what you thought life would look like. We all it the loss of the assumptive world. I ate well, I exercised, how did this happen to me? Dr. Jimmy Holland in Sloan Kettering coined the term “the tyranny of positive thinking.” Sometimes there’s this compulsion if I’m not positive all the time, there’s something wrong with me.

I’ve just not met a human being faced with illness that can just look at that and go this is great; I’m gonna remain positive throughout this. You have to experience the full range of emotions, which is this is not what I thought life would look like today. I was not prepared to face CLL when I was planning my 2017. 

So yes, taking control, soliciting help, being your best advocate are really important components.

Living with uncertainty is hard, and so sometimes it is just letting someone on your cancer team know what you’re experiencing. I’m feeling afraid, and I’m not sure that’s normal. I worry a lot, or my wife tells me I’m worried a lot, or maybe my husband is telling me I worry a lot. So at first it’s just asking is there someone I can talk to about how I’m feeling, because then that leads us to approach what your concerns are from a real holistic perspective. 

We want to know are you sleeping well at night, because if you’re not sleeping well at night, you’re probably not going to feel very psychologically prepared to meet the day, either. So we look at you from a whole patient perspective, and we also look at your family as well, how they’re coping.

So number one is just asking who is on the team that I can talk to about this. At many cancer centers you’re also taking some screening tools where they’re asking about your distress and about your concerns. And so sometimes we will reach out, too, even prior to you telling us you need some help. We will do outreach first and say we see that you’re a little concerned about these things; can we bring you in and talk to you more fully about it?

Jeff Folloder:     

Mental health resources, without getting to political, seem like they get the short shrift in medical care. And it shouldn't be that way. It’s been my experience that patients who take an active role in their own care, who embrace the problems that they have and seek help tend to have better outcome. Is that a fair statement?

Susan Ash-Lee:  

Yeah, I think even those folks that are really taking control of their healthcare will experience the grief of illness.

And so it doesn’t mean that you are not coping well. It means that it’s very human to grieve the loss of your health and what you thought life would look like. We all it the loss of the assumptive world. I ate well, I exercised, how did this happen to me? Dr. Jimmy Holland in Sloan Kettering coined the term “the tyranny of positive thinking.” Sometimes there’s this compulsion if I’m not positive all the time, there’s something wrong with me.

I’ve just not met a human being faced with illness that can just look at that and go this is great; I’m gonna remain positive throughout this. You have to experience the full range of emotions, which is this is not what I thought life would look like today. I was not prepared to face CLL when I was planning my 2017.

So yes, taking control, soliciting help, being your best advocate are really important components.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on January 4, 2018