MPN Pod: Stories from the Marrow
Sep 30, 2026 · 29 min · 13 segments
In this episode of MPN Pod, Kay and Josh sit down with Rachel Suarez, a licensed clinical social worker who specializes in oncology, to discuss the often overlooked emotional and psychological…
Rachel SuarezGuest
Josh BraggHostKay VermeuleHoststick with the marathons because an MPN diagnosis like polycythemia vera or essential thrombocythemia is chronic or something you'll live with for a long time as you create a care team, establish treatment goals, and find support along the way.
And so it is really important to learn how to manage your physical health as well as your mental health when dealing with the psychosocial aspects.
And in addition to dealing with these thoughts and feelings and physicalities by yourself, it's important to share things with your support network.
But how do you communicate with people about something that can't really be seen or experienced themselves?
Everyone thinks they know fatigue, but it's a whole different experience for someone living with an MPN.
While it can be physically visible, there are things that can help you see that someone is experiencing that fatigue.
And I think in order to communicate that effectively, I think sometimes patients, they're like, I don't know what words I can use.
And I said, well, sometimes it's easy just to relate it back to something, a battery life or something as simple as that, where people can really universally grasp what that means.
I kind of break it down to the basics of showing them a picture of battery and like you could easily just like draw in, you know, where your your fatigue level is at and using that as a tool to really explain to friends and family why you're not feeling the way you used to feel.
And then I think also in the workplace, another thing is to focus really on your function and place boundaries.
If you're able to on maybe adjusting your schedule, if you can work with your leadership and where you're working or if you work for yourself, being able to really say, you know, maybe I can only dedicate three to four hours and not the full eight hours that I used to do and trying to also work when you.
or feeling your best, your peak, and trying to conserve also energy when you're not feeling that well.
And I think that's where a conversation with someone like myself can really help you kind of think creatively through those things.
stick with the marathons because an MPN diagnosis like polycythemia vera or essential thrombocythemia is chronic or something you'll live with for a long time as you create a care team, establish treatment goals, and find support along the way.
And so it is really important to learn how to manage your physical health as well as your mental health when dealing with the psychosocial aspects.
And in addition to dealing with these thoughts and feelings and physicalities by yourself, it's important to share things with your support network.
But how do you communicate with people about something that can't really be seen or experienced themselves?
Everyone thinks they know fatigue, but it's a whole different experience for someone living with an MPN.
While it can be physically visible, there are things that can help you see that someone is experiencing that fatigue.
And I think in order to communicate that effectively, I think sometimes patients, they're like, I don't know what words I can use.
And I said, well, sometimes it's easy just to relate it back to something, a battery life or something as simple as that, where people can really universally grasp what that means.
I kind of break it down to the basics of showing them a picture of battery and like you could easily just like draw in, you know, where your your fatigue level is at and using that as a tool to really explain to friends and family why you're not feeling the way you used to feel.
And then I think also in the workplace, another thing is to focus really on your function and place boundaries.
If you're able to on maybe adjusting your schedule, if you can work with your leadership and where you're working or if you work for yourself, being able to really say, you know, maybe I can only dedicate three to four hours and not the full eight hours that I used to do and trying to also work when you.
or feeling your best, your peak, and trying to conserve also energy when you're not feeling that well.
And I think that's where a conversation with someone like myself can really help you kind of think creatively through those things.
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