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2025 Patient Seminar Session: Mental Health and Emotional Well-Being

The Hairy Cell Leukemia Foundation hosted this session featuring guest speaker Emily Blackmer from the Mayo Clinic.

View a recording of Ms. Blackmer’s presentation.

Transcript of Ms. Blackmer’s presentation

Introduction

I'm so glad to be here with you all. I had spoken with the Hairy Cell Leukemia Foundation back in 2023 at the Women's Forum and I'm really looking forward to being with you all today.

Currently I'm working as a social worker at Mayo Clinic, and I work in hematology. I also work in the CAR T-cell therapy program.

Role of Social Workers

Social workers are available to you in your treatment settings. The role of the social worker really is to look at the non-medical aspects of going through treatment, getting well, and staying well.

Goals for the Session and Evidence-Based Lens

Our goals today really are for connection and to look at healthy coping strategies and effective coping strategies. I’m very much geared toward: What does the data say about how we can effectively cope with chronic illness? So not just what is one person's good idea, but what has been shown to be effective. So that's the framework for which I view this discussion.

I want to explore grief and loss in the setting of chronic illness. Grief and loss are often just considered when we're talking about end-of-life issues, but the reality is grief and loss are a part of varying experiences in our lifetime. And dealing with chronic illness certainly brings up a lot of concerns around grief and loss. So I am going discuss that a bit and then talk about how you implement some of the strategies that have been data-shown to be effective in dealing with and coping with chronic illness.

So I hope that you can obtain some tools to manage these challenges and identify some expected and some unexpected challenges of coping with chronic illness and feel a little bit validated.

My experience with patients has been that so often we see people as islands on their own: themselves and then their immediate family and immediate support network. But the reality is there's such a shared experience for folks who are coping with chronic illness, and it's important to validate that you are not alone in this.

And that can be comforting, but it can also feel challenging in the sense that it's: okay, other people are going through this, but does that minimize my feelings and how I'm managing this? Just because other people are going through it doesn't make it any easier for me, necessarily.

Common Concerns Across the Treatment Journey

I want to highlight what are some of the common concerns that folks have. This applies to both patients and caregivers, and so I want to make sure to note that. And I'll differentiate between the two in a little bit, but I want to explore what the things are that typically come up for folks as they think about coping with chronic illness and treatment.

Before treatment, so often people are worried about what is the impact on families as well as on work. I want to emphasize that with families. So often I find with patients that they're concerned about over-involving their family because they don't want to cause stress, they don't want to cause hurt.

But the reality is not including your family, not communicating with them, is harder for them because they are feeling very out of control of the situation. They can't change the fact that the patient has the illness. They can't change that you have leukemia. They can't change whether the treatment itself works or not.

But what they can do is be there to support you emotionally or in practical ways. One kind of example that I tease with patients is that my grandmother always says, “Don't rob me of a blessing.” And so I give a hard time to patients about that, just the implication being that family wants to contribute, they want to help, they want to be there for you, whether that is in those practical ways or more just from an emotional standpoint. And not allowing them to do so is harder for them.

So I think often patients want to minimize the involvement of family with the idea that they're protecting them, but it's harder for families when we don't involve them in these conversations.

Another common concern before treatment is people feeling overwhelmed but needing to move forward quickly and not really having that time and space to process emotion. So we're going talk a little bit about that in a bit, but there is this dire need for patients to allow yourself time to feel your feelings. And again, we'll explore that as well.

One of the biggest concerns during treatment is the physical piece. You're coping with how your body is responding to the treatment. And for a lot of folks, that becomes then a practical social concern, right? How are you showing up for your family? How are you able to engage with your kids the way that you normally would? Are you able to go to work? Do you need time off from work?

These are the concerns that people have during their treatment. And there are resources to support that. But again, I encourage folks to go back to allowing yourself time to sit with those feelings and those emotions and talk to your family about it.

After treatment, there's a lot of concern around anxiety for future treatment. It's interesting because when I see folks going through either the clinical trial or the commercial CAR T treatment, so often they'll get good results at the end. And they go home and they're trying to regain a sense of normalcy.

But they are always waiting for that other shoe to drop. And I think that's one of those unique pieces of dealing with chronic illness, is that it often feels like there's pressure to always wait for the next step as opposed to allowing yourself joy and sitting in good results comfortably.

And then connecting with people. Folks go home from treatment and there's a lot of pressure from family and friends to act as though nothing has ever happened. And it's: wait a second, I have been dealing with chronic illness. I've been dealing with this ongoing treatment. Let's recognize that. Let's not ignore that this is part of now my lived experience, and I'm not going be able to relate to people in the same way.

It's so uncomfortable for family and friends to have to acknowledge that our relationship has changed because they have gone through something that is so incredibly intense that they are going to talk with me in a way that they haven't probably before. So that is a very common experience for folks.

And then themes in terms of how people cope effectively with treatment would be around the involvement of family. I see so many folks who have a lot of family involved. They have a spouse or they have children or siblings or close friends.

But I also have plenty of people who I see regularly who, for whatever reason, don't have a lot of folks involved and who are supportive. And the ability to engage with people who know you well, knew you before your illness, and are now standing beside you through your illness is something that a lot of folks must really process as they go through their treatment.

Worldview, Control, and Coping Tools

Faith or worldview - whether that's spirituality or an identified religion. We all have a point of view, a worldview, which impacts how we view what is problematic in our life and how we define desired goals.

Reflecting - It's important for patients and caregivers to reflect on how you define the problem. And I think it would be easy to just immediately go to, the problem is leukemia, or the problem is cancer, the problem is chronic illness. But the reality is, from an emotional standpoint, the problem is different.

Am I thinking about end-of-life issues? Am I thinking about legacy? Am I thinking about how to enjoy each day and what I want to get out of each day?

And so I encourage folks to really reflect on what is your point of view? How do you define the problem? How do you define then what would be the desired intervention or solution to the problem?

Understanding that the medical piece of it is something you don't have control over, and this is why it's so important to focus on what's within my realm of control versus what isn't.

And then often people are just really using distraction tools, and I'll be the first person to say, even from a clinical standpoint, it is valuable to find spaces where… what are those sorts of superficial things that you engage in that help you to cope on a day-to-day basis? Is it binge-watching a TV show? Is it doing puzzles? Is it spending time with family members distracting yourself from the root problem?

I just warn folks that not giving time and space to acknowledging the emotional impact of chronic illness and treatment, and only engaging in distraction long-term, will detract from how valuable that distraction is, because then you will start to use that as an unhealthy coping mechanism. And so try to sort of balance that time—that is one thing that's important.

And then physical activity is obviously an important aspect of people's ability to cope, really, because you're looking at that release of endorphins and that hit of dopamine that is so important for your brain in terms of coping with difficulty.

Talking to Children About Diagnosis

[A question came in about communicating your diagnosis and treatment to young children.]

There are two things there. One is around age-appropriate language. So, how are you explaining this in a way that is directed toward the age of the individual? The needs of a young child—four, five—are going be very different than someone who's 15, 16, because their awareness of the world, their awareness of end-of-life issues, as well as managing difficulty in life, is going look very different.

So if you think about Erikson's stages of development, right? At an earlier age, children are, for lack of a better word in this moment, self-centered, and they're only thinking about how does this affect me? Whereas as they progress age-wise, they're going be able to navigate the difference between: how does this affect me, but how do I empathize, how do I sympathize with the emotions of another?

And so it changes the way that you're going to communicate. So I encourage folks—and this is probably the academic in me—that's: look at those Erikson stages of development. That'll help you understand where this person is at in terms of what their brain will actually receive, because our brains are developing well through our whole life, but in a lot of ways in terms of maturity, ability to understand language and judgment and reasoning up until 26, and maybe even further with some recent data.

But regardless, our brains are still developing. So I encourage folks: educate yourself about where this person is in their development. That's the first thing.

The second thing is not to lie. So does that mean that you give every single tiny detail of the implications of an illness or the implications of treatment or the details of treatment, and the fact that maybe you're going have a needle put into your arm, or those very minute details of things that might not be appropriate? But to not lie, because that's where a sense of betrayal comes in.

So I really advise folks to shy away from anything where you're saying, “But I'm going be fine,” or “I'm going live forever.” None of us are living forever. We all have an expiration date. We just don't know when that is. And so I think the big piece is to be truthful but communicate in a way that is age-appropriate.

I do also caution folks around there are quite a few spaces online where youth can connect with other youth who have loved ones going through cancer care. I want to give the caveat that's something to be monitored.

The “Sandwich” Pressure

[Question from moderator: I think one of the challenges that the moms and the dads have—is that they're trying to manage their children's feelings, as we talked about, but also managing their parents' feelings or their siblings' feelings. And they almost feel like they're sandwiched in the middle.]

Again going back to the honesty piece—it's age and honesty. Talking with those family members and friends in your life who are old enough to manage their own emotions, being bold and being direct about: “I cannot, because I am dealing with my own emotions and I have to be the protector of children's emotions, I cannot manage your emotions for you.”

I encourage you to connect with a peer support group for caregivers or a peer support group for friends and family of someone dealing with cancer. Encourage them and be bold enough to say, “Unfortunately, I'm not going to be able to be your support because I am the person dealing with this.”

And those are not easy conversations. So I don't want to minimize that and make it seem like, “Oh, that is an easy conversation to have.” But I do encourage folks to say, “I'm not going be the person that you should come to for processing and coping because I am the patient.”

And then the opposite end of that is with children: telling them it's important that I be honest with you, but there are going to be days that are hard for me and I'm not going to be able to talk to you the way I normally would. Here are some safe people who would be good to talk to if it seems like I'm not able to talk with you that day.

But I would validate that there is still the difficulty of having to engage. If it's your own children or small children in your family, you will be the person that they're going want to hear from.

And carving out times where it feels comfortable for you. It's never going be fully comfortable, but where it's: today I'm having a good day. Today might be a day when I initiate a conversation with the kids because I'm feeling stronger today from an emotional standpoint. Today's a good day for me to show up for the kids.

Whereas on a different day, you're just honest with them and say, “Today is not a day where I feel like I can talk to you about this, but here's a safe person who you could talk to.”

I don't think there's one right answer, and that looks different depending on family dynamics, right? If the grandma is really involved, she's a good person and you can tell her, “Hey, I can't deal with the kids' emotions today because I'm dealing with my own. Can you step in? Can you step up?”

And just… I think that piece around honesty with people about where you're at is so critical. So I don't have a perfect solution, but I again go back to honesty and age.

And I really encourage when I work with caregivers—so I run like a caregiver support group for folks—and I usually encourage them: you cannot rely on the patient to be your support in this. You need to find other people, and you need to be able to accept that there are going to be times where the patient themself cannot be your point of contact.

And that's a hard thing to do. But there are also going to be days when the patient has space or capacity where they can engage in that dialogue.

So, developmental stages, making or encouraging adults to be mature in their own response, and then talking with people in a way that doesn't deny the truth.

There is a growing push as well for resources to be made available for financial support of caregivers because so often it takes a toll on their workplace situation.

I just want people to know that is something that's really being pushed in legislation, that's being pushed in various cancer support communities—so something to be hopeful about and for people to try to get engaged on.

Four Domains of Challenges
There's a lot of data out there for folks about successfully coping with chronic illness.

Grief and loss

One of the areas that I'm particularly interested in is grief and loss, because, as I mentioned, grief and loss is not just around death. It can be about grieving the life you planned or expected.

So often I work with folks who are maybe recently retired and it's: “Hey, I just got diagnosed with cancer. I wasn't exactly planning to spend my retirement going to, for me, it's Mayo Clinic, getting cancer care, right?”

“I wanted to travel, I wanted to spend time with my grandkids, and now I have to limit my interactions with the grandkids because they've got a lot of germs, or I'm spending my travel money going to get treatment as opposed to going somewhere enjoyable and pleasurable.”

You have to grieve what you planned for this time in your life. And that looks different depending on where you're at age-wise.

And learning how to accept that this is going have to reframe how you spend that time, loss of freedom and some stability because you're beholden to your treatment schedule. And that's really challenging for folks. And embracing a new normal.

The stages of grief apply not just to life and death, but to coping with these interruptions in the life that we expected for ourselves.

And social isolation, which I alluded to when I was talking about grandparents who want to spend time with grandkids and now all of a sudden, they can't be around those little germ factories.

So social isolation can be another real piece of grief and loss: “I'm used to going out, I'm used to spending time with friends.” Or, not to overstate this, but it's: “Oh, I used to love to go out once a week and watch a football game and have a beer, and now I can't do that anymore.”

And so I don't see those friends because they still want to do that, because they're not dealing with chronic illness or treatment.

Emotional Rollercoaster

And then we have the emotional rollercoaster. Survivorship is sometimes described as an individual from the time of their diagnosis through the balance of their life.

So survivorship is you're actively working on surviving the cancer from the time that you're diagnosed to the end of your life, and that this can mean that life does not stop going on while you're going through treatment.

And so there's this rollercoaster of: I'm dealing with the emotions of surviving through my cancer diagnosis, but I'm still being hit with: I have to pay my bills. Maybe I have to go to work. I still have to parent, which is something that we were already talking about.

And what the expectations are of you around coping during treatment and post-treatment, and what that should look like—and that is so tough because everyone around you will have an opinion or an emotion around how they feel like you should be coping with this.

And that's because it's unfortunately a lot about how it affects them. And so navigating that is very challenging. And then again, I already talked about this, but that feeling of waiting for the other shoe to drop.

I also want to point out the very real data: there is an increased risk with a history of depression or stressful life events for people to deal with more clinical pieces of mental health and coping that can be problematic in terms of their ability to continue through treatment.

And chronic illness leads to a higher instance of anxiety and depression than for the general population, right? I often will say to patients: we all experience anxiety and depression, and there's a range of normal. When you have a diagnosis like leukemia, that range of normal expands, but it's still greater than the general population.

And that's very hard to deal with and often requires the intervention of a clinician, potentially medication. And that's something I want people to feel confident in reaching out for because again, you have that sort of expanded range of normal that's higher than the general population that might need a little bit of… that space that's beyond the normal might need attention from a clinician.

Physical Health

And then finally, physical health: that fatigue, that frustration of “I used to be able to do all these things and now I can't anymore.” And I think that very much reflects that grief and loss piece.

And then changes in mobility. Similarly, maybe you coped in the past by being a runner, but now you can't run, or you used to lift weights and now that's problematic for you, or go golfing on a regular basis, and now some weeks you don't feel good enough to do that.

And so it changes the way you look at self-care (and I'm going talk about self-care in just a minute). And then that reliance—potential reliance—on medical equipment.

Acknowledging Burnout, PTSD, and Long-Term Coping

[Mediator reads a written comment posted in Q&A about burnout: “HCL is chronic and you deal with it for decades. That does mean that you get burned out from dealing with it for so long. You've tried these approaches and it starts to feel like you're experiencing PTSD and depression.”]

I want to acknowledge that comment because I don't know that there's one right answer. And I think that this is something too, where there's a lot of reflection on self, and what works for one person isn't necessarily going work for another.

And the reality is, there is medical PTSD that is a real concern. And so I also want to be careful to make sure that people know there sometimes are needs to engage with a clinician and talk about: are there needs beyond sort of these self-care, historically known as self-care approaches? Is there something I need beyond that?

Because is traumatic to have to constantly think about how to cope with this. It's: “I want to not have to think about that. But I don't have a choice.”

And so I think there's, again, I would reflect that grief and loss piece around: I'm grieving the loss of the inability to not think about chronic illness and treatment.

Evidence-Based Responses to Each Domain

In terms of grief and loss, we really encourage folks to set short-term goals and encourage your support network to engage in self-care as well. It's not just you. And letting go of guilt about what you can't do anymore. That's easier said than done, but I would go back to, as well, that piece about honesty and communicating with those who are in your circle about: “I feel guilty because I can't do this.”

And it would probably be very interesting to hear how they respond to you acknowledging that feeling of guilt, because very often, family members and friends, when I challenge folks on this, they'll say, “Man, I didn't know you were feeling guilty. Please don't feel guilty. I don't want you to feel guilty.”

And so communicating about your emotions is important.

Using technology to engage in alternative activities is important as well—whether that's doing FaceTime or engaging in some sort of blog or video blog, CaringBridge, something like that—where you're using technology to stay integrated into the communities that you've built in your life.

And meeting others with the same experience is so validating, and I'm sure you've all experienced that working with the Foundation as well.

And having family witness your experience—again, that honesty piece—see what I'm really going through. This will help them to have empathy and for the two of you, or three of you, or however many, to relate more because if they really, truly see the experience you're going through, it will be easier for them to connect with you.

And then confronting your diagnosis has better outcomes than avoidance and denial. So it's tempting to… like I talked about before, that distraction piece. Distraction is valuable to an extent, but when you start avoiding processing your emotions about the diagnosis, that's when it can be unhealthy.

Get accurate knowledge, do research, but don't do so much research that it becomes anxiety-inducing. And know your limits—and that differs depending on the person.

And manage what is within your realm of control, and affirm the joy of living each day, which we really all have to do.

In terms of specifically more clinically with mental health: open lines of communication with your support network and accept help when available. And it's that piece about don't rob someone of a blessing. If they want to help you, let them. It's beneficial for you as well as for them.

And understand clinically significant signs of depression and anxiety. And this is where you need to reach out to your treatment team to explore what your options might be.

I always encourage mindfulness activities.

And reorganize your space in a way that makes sense, that makes your anxiety less. For so many people, having a space that feels safe to them in their home will help them to cope with sort of that day-to-day stress of dealing with this.

And then physical health—again, I know you just met with the dietician—but focusing on diet, exercise, and commitment to treatment regimens: going to your appointments regularly, not avoiding, will be super important as well.

Complicated Grief and Prior Trauma
I wanted to note complicated grief is something that is prolonged, chronic, and persistent.

Our grief and loss around needing to engage with chronic illness and associated treatment can be exacerbated by our own past experience. It can be something that's impacted by what our resource network is, what our support is like. And previous trauma will play into this as well.

And so sometimes I talk with folks about: you may have other trauma that you have to process to process the trauma of chronic illness because it is a trauma. And I very much validate that.

Practical Tips for Patients vs. Caregivers
I wanted to talk a little bit about practical tips, which reflect a little bit about that slide that I had talked about those four domains.

For patients: talk about your feelings in a supportive environment and don't blame yourself for what you're going through. Let yourself feel those emotions. It's okay to not be positive all the time. Decide when and with whom you want to share your cancer story, and practice relaxation techniques.

●      Stay physically active, engage in hobbies, and learn how to manage those treatment side effects.

And for caregivers—this is what I really want to highlight—is to listen without giving advice. We don't always have to try to fix a problem because you can't fix this problem, right?

What you can do is provide the best support possible from an emotional standpoint because you don't necessarily have any control over the diagnosis or the effectiveness of the treatment.

And then offer practical help without being asked. Patients don't want to ask for help, so offer that help without them asking. Provide rides to treatment and remember these ongoing support needs—especially with chronic illnesses like Hairy Cell Leukemia, which people live a full life with, but again have, as was mentioned, this sort of ongoing need to address their health concerns.

●      Provide ongoing support. It's not going end. There's not going be a date by which this person stops needing support. And just show up. Presence means a lot.

I have to say, I'll give an example. When I was younger and earlier in my career, I was working in an ICU and I was on the Code Blue team. So if there was a code, I responded to provide support to the family.

And I'll never forget this time where the patient was having to undergo immediate surgery right there in the ICU, and I'm standing with the patient's son, and he just wanted a hug.

And I remember that moment, feeling so inept: what do I do? Like, how can I comfort this person? This is so traumatic. This is so difficult.

And he later came back to me and said, “I just needed someone there to give me a hug.” And I think it's important for caregivers to remember that sometimes our presence is all that's really needed.

We can't solve the problem, but we can be there and walk alongside people as they're coping with this.

Recognizing Clinical Depression and Anxiety
I do want to highlight: if you're feeling some of these symptoms that are more reflective of clinical depression, reach out to a clinician to get the treatment that you need.

Specific Coping Strategies and Accessible Self-Care

So again, to go back to what those strategies are.

Movement: walks, at work, chair yoga. Getting good sleep—good sleep hygiene is so important. Are you getting enough sleep, and is it consistent sleep? Are you sleeping through the night?

And these are things where, if you don't feel like you're getting it, you need to talk to a provider as well.

“These are my two minutes.” Allowing that time to cry and be present with your sadness, frustration, and anger, even.

There's a lot of evidence and data to suggest emotions like sadness and anger—our body really can't sustain those emotions for more than 120 seconds.

So I often talk with patients and caregivers about the fact that if you allow yourself two minutes and say, “For these next two minutes, I'm going be pissed off. I'm going to be sad. I'm going cry. I'm going to scream into a pillow,” whatever that looks like for you—if you allow yourself two minutes to truly engage in that emotion, your body will have to naturally dissipate from that negative emotion because it can't withstand it for longer than two minutes.

So this is something that I really recommend to people: say, “These are my two minutes.” Like you get struck with something and you're just off in that moment—say, “All right, for the next two minutes, I'm just going engage this feeling,” because it will then naturally dissipate after that.

Let go of perfectionism. Nobody is going to cope with this perfectly. There is not one right way.

Try not to compare yourself to other people. “Oh, this other person who is dealing with Hairy Cell Leukemia is coping in this way. I should be like that.” We are our own unique people, and what will speak to us individually is different than the next person.

Set those goals and priorities. Stay connected with people. Delegate out and seek outside support.

So here I put in this note: it doesn't have to cost a fortune to engage in good self-care. When I work with the caregiver support group, people will say, “I don't have money to go get…” It's like people tell me, “Go get a massage,” and they're like, “I don't have 200 bucks or a hundred bucks, or whatever it is, to get a massage.”

It doesn't have to cost a lot of money. There are things like free online videos about desk or chair yoga, grounding exercises that help to keep us present.

Grounding exercises are a way to train our brain not to be future-oriented in its thinking because that's where the anxiety comes in. So being present in this moment, thinking about your five senses, even, right?

What am I seeing in this moment? What am I hearing? What am I tasting, smelling, touching? That will help us train our brains to stay focused on the present as opposed to that future-oriented thinking, causing anxiety.

Mindfulness activities are similar in that way, as well as those breathing exercises.

A gratitude journal is another great way to, for free, engage in processing emotions or doing mood tracking.

If you're concerned that maybe how you're coping is getting to be outside that range of normal, even for people dealing with Hairy Cell Leukemia or other chronic illnesses, start a mood tracking log. And this way it'll help you to know maybe I do need to reach out to someone outside of my sort of regular support network. I encourage that as well.

Transcript of Q&A

Question: How can someone cope with chemo brain and loss of cognitive functioning after cladribine?

Answer: “When you say coping with the chemo brain, do you mean in terms of what you're able to accomplish or coping from an emotional standpoint? … Probably both. … So I would say, okay, from a practical standpoint, I think it's really important to communicate with the people around you how it feels, and to talk about how it feels physically to have that brain fog, but also how it feels emotionally, like telling people I feel frustrated, I feel irritated that I can't come up with a response that would be reflective of how I previously would've responded.

Being patient with yourself. Being forgiving of yourself. But also engaging in that genuine emotion of I'm annoyed by this and reflecting that to the people around you.

People will be more responsive and receptive to your brain fog if you're telling them about it. If they don't know, they can't support you and they also can't empathize. They’re not going be able to read your mind.

I recognize so much of this requires vulnerability… and that is another pressure that comes with chronic illness… but you will get better support the more willing you are to be vulnerable about where you're at. If you are willing to be vulnerable, you will have deeper connection with the people around you. You will feel more present in your own life… and it will contribute to meaning in your life and give you that purpose.”

Question: What is CaringBridge, and how can it support patients?

Answer: “CaringBridge is interesting… CaringBridge is a space where online you can do posts that people you invite. So only people you invite can follow your journey and provide support in an online format. Like a blog a little bit.

People use it so that they don't have to send 50 texts every single time they get big information. It's I heard this piece of news and I have all these people who wanna hear the update. I don't wanna be sitting around all afternoon texting 50 people. You put one post up of what you're willing to share… to people you've invited… without requiring you to engage in constant communication.”

Question: How can someone handle feeling "betrayed" by their body and fearing every ache or pain?

Answer: “I think that is a very insightful question… you're being vulnerable and saying I feel betrayed. I think engaging in that emotion and not trying to overcome it necessarily—I don't know that you need to overcome it. You can continue to feel betrayed, but that's not a positive emotion.

How do I navigate the fact that I'm going continue to feel betrayed by my body? And how do I combat that?

I think… being honest about that and saying, I do feel betrayed and I don't trust my body. And maybe even engaging your providers in that conversation—like your doctor—about How do I trust symptoms? How do I trust my body? How do I accept where I'm at but not think about things in a way that is going to amplify emotional attachment to my physical body?

I don't know that I have a good answer off the cuff… Let me think on that a little bit… but I think that’s an incredibly insightful question.”

Question: What are some examples of what patients are doing to cope?

Answer: “I wanted to highlight something said… volunteering. I do find—this is more anecdotal than data-driven—that contributing to your community… gives you a sense of purpose. It reminds you of your value in life… reminds you that you are not the only person going through difficulty.

Volunteering outside of chronic illness… like at a food bank or toys-for-tots… reminds you that everyone has a battle and a struggle, but they look very different. It can give perspective in channeling your own battle.”

Question: Is it normal to keep thinking about HCL, PTSD, stress, and fear even two years post-treatment?

Answer: “Yes, it is normal. I wanna validate that with no follow-up and just say, yes, that is normal.

I would be more concerned if it didn’t come up. If you were telling me, Nope, everything’s fine, and I don’t think about it, I would say I think you’re avoiding something… So while it's not enjoyable, I validate what you're saying and say that is normal.”

Question: How does someone prepare mentally and emotionally for returning to work after treatment?

Answer:

First: the practical issues.
Making the appropriate arrangements with your employer around what are the limitations. These are things you don't have to share with coworkers. Deal with HR. Set the standard: what can they expect from you and what should you expect from them? Do you need reduced hours? Flexibility for intermittent time off? FMLA?

Second: the emotional piece.
You will go back and people will have questions. Start thinking about How do I want to respond? To what extent am I willing to be vulnerable with people who are not in my close circle?

People will say things that could be triggering… because they just don’t understand. Think in advance about how you will cope with that.

Allow space in your close inner circle, for I’m going need to debrief this. Maybe two weeks into returning to work, I'm going to have coffee with this friend who I can process this with.

There are going to be things that will be hurtful because people don't understand what you've been going through. Just giving space for “I’m going give grace to them that they don't understand, but I’ve identified the person I’ll process this with.” Preparing for those moments is important.

This transcript has been edited for clarity.