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HCLF Women's Group Webinar: Coping Well With Chronic Illness

June 9, 2023

Speaker: Emily Blackmer, MSW, LGSW from the Mayo Clinic, Rochester, MN

This webinar was hosted by the Hairy Cell Leukemia Foundation in partnership with the HCLF Women’s Group.

Presentation Materials

View Ms. Blackmer’s slides. >>

Transcript of Ms. Blackmer’s presentation

Adi Weber:

I'm really pleased to introduce our speaker for today, Emily Blackmer. Emily currently works in the Transplant Group at the Mayo Clinic in Rochester, Minnesota with a primary assignment to CAR-T and hematology. Emily also teaches at Bethel University in their online BSW and MSW programs, and is the Associate Program Director for the online BSW program. Emily serves on the Board of Directors for Red Drop Resources, a blood cancer support nonprofit based in Rochester, and is also a Key Spouse for the United States Air Force providing support to families of deployed service members.

Emily Blackmer:

So when Anna had reached out, she let me know that you all had a meeting in September where you talked a little bit about finding joy amidst dealing with chronic illness, dealing with a cancer diagnosis, and being in various stages of treatment process. So she had said that as a part of that, some of the things that came up were a desire for further conversation about how to cope with chronic illness and how to just be present in the everyday. And so what I'm here to talk a little bit about is coping with chronic illness, but specifically, really wanting to address some of the unique characteristics of going through treatment and dealing with chronic illness as a woman. And I was just so excited when I connected initially with Anna about the ability to speak to that need, so I'm hopeful that we'll have a good discussion today.

Adi, thank you so much for the very kind introduction. I think most pertinent to you all is that I have worked in transplant oncology, specifically hematology and CAR T since January 2020, so right before the pandemic. I started in a new role as we moved into a new phase of life. Historically, dealing with pandemics is I think not something any one of us expected, but certainly I saw, even in the notes from your meeting in September, that COVID really has played such a big role for so many of us in terms of how we're processing and coping with health conditions that would've been challenging prior to COVID, but now there are such new dynamics that we're dealing with.

So the goals and outcomes for this meeting will be talking a little bit about coping with chronic illness and finding resources to help do that, specifically as women. And I read a lot of literature about women coping with chronic illness specifically, and I think one thing that's so important is connection, connecting with other humans, connecting with people with a shared experience, and really engaging in human relationship as a way to cope. So my hope for our time together is that we as a group can connect, we can identify some coping strategies, and talk a little bit about how do we realistically implement coping strategies? Because I do think it's very easy for people like myself, a social worker and mental health provider, or even one of your medical providers to provide ideas on how to cope; it's a whole other conversation to talk about, "but realistically in my life, what does that look like?"

So I definitely want that to be part of our conversation today, how do we implement these tools? There is the physical component, but as I tell all of my patients, all those nonmedical issues, mental health, substance use, financial concerns, employment, family dynamics, housing, all of that stuff plays a huge role in our ability to cope with physical illness, to address wellbeing overall, and to then cope with treatment. So I definitely want us to explore that and identify some expected and unexpected challenges of coping with chronic illness. And my hope would be that ultimately, you all feel really validated and supported in your experience.

So I know that this group had a meeting in September to talk about experiencing joy amidst the treatment of your illness and coping with chronic illness. I wanted to note some of the themes that I found in the data that was provided to me from that meeting.

Before treatment, a lot of you were worried about the impact on families and work, and overwhelmed by needing to move immediately into treatment. And then during treatment, a lot of you were coping with the side effects of the treatment, but also what the impact would be on your families and your work. And after treatment, anxiety about the need for future treatment, and the difficulty of connecting with other people who don't understand what you've been going through and are hoping to have you present as "normal." And this is something I'm going to talk a little bit more about, these unrealistic expectations of those in our circles around how we present.

Themes I found in terms of coping were family, faith, and physical activity. I'm going to expand a little bit on those things as well during our conversation today.

One thing that I really would like to spend a few minutes talking about is the unique challenges that exist for women in coping with chronic illness. I did review some literature in preparation for this conversation to really see what is the data telling us about how coping with chronic illness is different for women than for men.

The big thing I found is that there are differing role expectations, and you all reflected that in the notes from the September meeting. So placing priority on family who needs them, and that for a lot of women, coping with chronic illness is sort of secondary to what they view as their primary role, which is meeting the needs of their families. And that for a lot of women, that means they end up avoiding health maintenance and treatment, even treatment with, for you all, it's hairy cell leukemia, for other people, it's other diagnoses, but that for a lot of women, they avoid their own needs because they prioritize that of their family, especially children.

And another role expectation that I really identified with is this idea of appearances and that for women, there's sort of this expectation that you look and present, to those in your life, as "normal" again. So I found that people will say things like, "You don't look ill," or, "You look so strong," or, "I didn't know you were sick," and that's actually not supportive, but really kind of irritating. I think annoying was the word that I saw in the journal article I was reading about this, that it's annoying to have people correlate how you physically appear to how you're coping with something like leukemia and a chronic condition. And that why is it that for women, our appearance, our physical appearance is so tied to what people understand about how we are doing internally, which is something you can't see? That is a differentiation that is existing for women and not as much for men.

And then one of the other specific unique challenges for women is the view of women in healthcare. And that illnesses primarily impacting women are less researched, less funded, less understood, and less diagnosed, and that's across the board. So that's not even specific to your own diagnoses, but in general, women's issues and any issue that affects both men and women is less researched as it relates to women. And so that is a huge cause for concern in terms of health equity.

Women's pain is less validated as well, and so more often than not, women who express pain or other types of physical side effects related to their illness are less likely to be believed, less likely to receive treatment for what they are expressing to their providers than men, and are more likely, actually, one article I found said that women are more likely to be provided a sedative than a pain medication to cope with their side effects from treatment because in my next point, you'll see, because women are seen as emotional, hysterical and sensitive. Those were the words I found in the literature. And so they're being given more frequently a sedative that would, in theory, just sort of calm your body down, maybe an antianxiety medication or antidepressant or something of that nature, as opposed to actually treating the root cause because it's seen as, "Oh, they're overreacting," or, "They're being emotional." And so that's a huge concern in ongoing treatment. And for people who have a chronic illness and are in regular treatment, that's a huge concern.

And so to that point, a challenge for women that's unique is that we are also expected to be our own best advocates. And I don't think that it's that men don't need to advocate for themselves because we all have to advocate for ourselves in healthcare, but I think for women, there's this expectation that you need to advocate if you really want to get good care. So it's not just sort of assumed that you should be having all the needs you express met, but that you need to go above and beyond to advocate for yourself. Otherwise, it's simply you being emotional, over-exaggerating, being hysterical, which is sort of a hysterical term that's been used for women, especially if there are mental health concerns along with medical issues, and so it is a different experience for women getting care for their chronic illness.

And the flip side of that, but related, is that women are more likely to seek out information and social supports than men. However, again, it goes back to women feeling like they're expected to do that and that isn't just naturally provided to them.

And so all of this points to the fact that the experience of coping with chronic illness is vastly different for women than it is for men.

Emily Blackmer:

I did want to provide just a little bit of data too about successfully coping with chronic illness, especially in light of the fact that we acknowledge the added challenge for women.

So some of those challenges are grief and loss and grieving the life you planned and expected, and that is comparable, in the data, to grief and loss around end-of-life issues, and that it's not any less significant, but it looks different and it comes out more as complicated grief and not what we would determine to be normal, "normal" grief. And some loss of freedom and some stability, because you have to be responsive to what's going on with your body, and you have to be responsive to your treatment plan. And so it's embracing a new normal, but still going through those stages of grief that we often associate with end-of-life issues, so denial, anger, bargaining, sadness, and depression and acceptance.

The data also looks a lot at the emotional rollercoaster of dealing with what is often referred to as survivorship. And that, for a lot of people, like what was being said before, is dismissive. And this idea that, "Oh, well you have a 'better cancer,'" or, "You're in survivorship," because sometimes survivorship is described as an individual from the time of diagnosis through the balance of his or her life. And it's like, "Well, don't call me a survivor when I'm still dealing with it," and it feels a little bit dismissive.

And then the expectations of what coping during treatment should look like and post-treatment should look like, and what are people expecting of us? Is that fair? Is it reasonable? And that everybody seems to sort of have an opinion about how you should be coping with your illness, even though they're not the ones going through it. And that is another factor impacting the emotional rollercoaster.

When it comes to depression and anxiety, there's a normal range. All of us experience those feelings in our lives, and the range of what is considered normal extends for people who are dealing with cancer and chronic illness, and so that range of normal is greater for people who are in situations like yours. And so, you're just going to be predisposed to being more impacted by what are natural emotions but can kind of otherwise be teetering on not normal. So, it gets disregarded a lot because of that.

And then there's the obvious physical health challenges of feeling fatigued, having potentially impaired mobility and stamina, and those changes in ability and independence can mean you're reliant on medical equipment of some kind. So, it really changes how you cope with the grief and loss, the emotional rollercoaster and mental health because of the physical nature of coping with your treatment. You might be able to otherwise deal with grief and loss and emotional rollercoaster and mental health issues in a particular way, but when you add in the physical component, it changes the way you cope then with those other challenges.

So, how do we address the grief and loss issue? Focusing on short-term goals and daily activities, encouraging your support network to engage in self-care because I don't want to leave that out. Whether it's a partner, a significant other, a family member, children who are supporting you, they also have to address self-care because otherwise, it's going to be very difficult for them to support you.

And letting go of guilt over accepting a role change that maybe you have been the caretaker for all these people in your life and now you're the one needing to receive care and support from other people. And so that shift and change in relationships, accepting that, being open and talking with those in your support network about what is it going to look like now that maybe my child is the one who has to take care of me or any other types of changes in relationships? And really having those family members be present with you and witness what you're experiencing so that they can relate as much as possible. And then ultimately, like you all are doing, meeting with other people who have the same experience is really helpful in managing the grief and loss.

In terms of dealing with the emotional rollercoaster, confronting diagnosis has better outcomes than avoidance and denial. And part of that goes back to how things are different for women, which is that we don't really have the luxury of ignoring our symptoms because they might get ignored by other people. And so we have to really kind of confront and then get accurate knowledge. And you all talked about this earlier, that clear communication with your providers is paramount to you being able to cope with the emotional piece of it because if you don't have clear information, you don't have a direct plan, how are you then to deal with the emotional impact of it when you don't even know what the practical piece is?

So manage what is in your realm of control, and that is how you communicate with your providers and then implement the suggestions they have, but also challenge them and affirm the joy of living each day.

In terms of mental health, be open with your providers. And I think this is, while challenging that we have to be the ones to do it, it is important for us to tell our providers, "Hey, I'm feeling overwhelmed. I'm feeling depressed, I'm feeling anxious, nervous." Letting them know that so that they have insight into how to better communicate with you about all of that stuff that I just talked about, like getting accurate knowledge and knowing your treatment plan, they need to know where you're at emotionally so that they can communicate with you effectively.

And accept help when available. If people in your support network are offering to do things for you, give them practical things to do. I often tell my patients this example, which my grandmother has always said, "Don't rob me of a blessing." And it's sort of this idea that sometimes when people offer to help you and offer to support you, it's also meeting a need for them because the people who care about you in your life, they want to do something that will be helpful to you and they cannot change your illness and they cannot change your treatment plan, but they can do something practical, whether that's watch your kids, mow your lawn, make a meal, create a schedule for you. I had a patient doing that this week with a friend. Let people help. Don't rob them of a blessing. So you don't need to feel guilt, you don't need to feel you're burdening people. They want that burden.

Engaging in mindfulness activities, you guys talked about this at that September meeting, but there are so many grounding exercises, yoga, deep breathing, things you can easily look up online that are even five to six minutes. Sometimes in the support group I run, we do chair yoga where we're all on camera together and we're just doing yoga in our chairs and it's five minutes, but somehow at the end, we all just feel a little bit better and it only took five minutes.

And I would say, especially for women, it's easy to sort of discount that kind of activity, like, "I don't have time for it." We all have five minutes, and ultimately, it will benefit you in terms of having more stamina and more energy if you are feeling relaxed and you're feeling like you had a chance to decompress even for five or six minutes.

And then these are things you all already know. But in terms of our physical health, looking at diet, looking at exercise, and commitment to our treatment regimen. Women are less likely to do what the doctors have told them to do because they're prioritizing other people in their lives. So a way to combat the complications of chronic illness and coping with chronic illness is to actually do what you're supposed to be doing and see that, prioritizing of your health and following your treatment plan, as a way to meet the needs of those in your family. And it's not selfish. It is a way for you to also support them.

I would never want any of you to dismiss symptoms of actual clinical depression or anxiety or other mental health challenges. So if you notice any of these symptoms, that's something a provider should know because while that range of normal, in terms of mental health symptoms, extends for people dealing with cancer and chronic illness, there are still some factors and concerns that we would have that maybe need further intervention and you shouldn't just write off as being normal because of your diagnosis.

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Note: Moderated Q&A followed Emily’s presentation. A transcript of the Q&A will not be shared online.

This transcript has been edited for clarity.