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Living With an MPN: Defining the “Relationship” to Your Disease

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Published on November 20, 2019

Key Takeaways

  • Define your relationship with your disease.
  • Not feeling hijacked or being at war with your own body.
  • Finding your own path for self-care while living with MPNs.

After a myeloproliferative neoplasm (MPN) diagnosis, patients may feel as if they’re at war with their own body. How can people practice self-care while managing the disease? During this Partners program highlight, patient advocate Maryann Gray and expert Lindsey Lyle discuss strategies for defining the relationship with an MPN in a way that helps patients cope with cancer, treatment, and complex emotions.

The Partners series is sponsored by Incyte Corporation. This organization has no editorial control. It is produced solely by Patient Power.

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You're a FANTASTIC resource and I share info with groups online, open up conversations with my oncologist and GP and send links to my adult children to help them understand. You guys are earth Angels.

— Annie, from UK, online MPN meeting attendee

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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.

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.

Beth Probert:               

Maryann, I’d like for you to talk a little bit about—because I know this is really key with you – is respecting rather than fighting the disease. You know, what do you mean by that? Because I know you brought that up, and how it has had an effect on your well-being and how you manage the disease. 

Dr. Gray:                      

I believe that each of us needs to define our own relationship to our disease. I’m not a fighter by temperament. I’m kind of an introvert. I’m quiet, I’m cautious. And I’ve also been living with myeloproliferative disorder for more than half my life now.

So for me, the idea of fighting myelofibrosis is not attractive. I don’t want to be at war with myself. I would never tell another person that that is not how they should respond. What I do encourage is that we have a relationship to our disease, to our diagnosis, and it’s useful, I believe, to define what kind of relationship we want. How do we want to respect our body, how do we want to respect our needs, how do we want to care for ourselves, and how do we want to think about this process that’s happening to us over which we have very limited control.

Beth Probert:               

Wow. And I could not agree with you more. That was very well said. And you know, sometimes we feel like our body’s been hijacked with an MPN, and I know we’ve all seen it, including caregivers, seen it every day or ourselves experiencing it. So I couldn’t agree with you more, Maryann. Instead of every day, “Oh, I gotta fight this,” but learning how to find a more peaceful way to deal with it. Our body’s already going through such turmoil. So that was really key.

So, Lindsey, I would like to turn a question over to you. I know that patients always look at you for support, ideas, and guidance. You know, their body’s been hijacked with this type of disease. And if you give any at all, what kind of advice would you give about adjusting different parts of their life? Things like self-care or social support. You know, maybe they’re not used to depending on anyone, but now they need to create that. Or exercise, or expectations. Could you talk a little bit about what you might say to a patient who feels they need some sort of adjustment?

Lindsey Lyle:                

Absolutely. So you know, I think that what Maryann had previously said was actually quite beautiful, and just that each patient is going to handle this diagnosis and move forward in different ways. And so I can’t repeat this enough, but each patient is going to have their own sort of path.

And so first of all, me as a provider who’s seeing these patients on a regular basis, sometimes I get clued in, even it’s nonverbal cues, just from the patients, maybe what they’re needing, or sense sort of anxiety or feeling a little bit out of control. And for people who have tended to have more control in their life, or they like control, you know, which is a lot of us, but that feeling can be quite disruptive.

And so you know, on that topic, certainly I try to encourage my patients that, especially patients that come alone to the office, is there somebody that you could maybe bring along with you? Or if you don’t want somebody maybe in the exam room with you, is there somebody that you’re talking to at home and just kind of sharing how your diagnosis is maybe affecting you? And maybe that’s a spouse, maybe that is a good friend, maybe that’s a daughter, maybe that’s a mother or father.

You know, so people’s support looks so different. I feel a lot of times that my patients are afraid to burden somebody, and that is where I try to really encourage them that we are fortunate with people in our lives who care about us, and just kind of being able to rely on somebody is not burdening them. You know, and often there are so many people willing to help. And if that’s not in somebody’s immediate family or social circle, I do recommend support groups of patients who are also struggling with the same illness, and that can really be very comforting.

So as far as social support, I’m a huge advocate for that. I do not want any of my patients to feel like they’re going through this alone, so whether that’s family or a social network that they meet with in person or online, I think that’s really helpful.

I’m also very fortunate to have psychology colleagues that work very closely with us, and so we’re really able to refer, just for even just cognitive therapy. I’m just talking through this major adjustment in life, and I really am so thankful for that service because it’s so beneficial.

As far as talking to patients about what they can do in their day-to-day life to kinda change things around, again will kinda depend on what symptoms they’re most burdened by. But certainly living a well-balanced, healthy life, including exercising and eating well, and maybe they didn’t really focus on these aspects of their life.

But I know just from experience and then certainly just literature, what we know that exercise is very beneficial in these sort of diseases and can really help combat fatigue. And certainly patients say, “Well, I’m already so tired. I don’t think I could go on a walk.”

But then once they do that, and I encourage them, you know, it really can help. They generally come back and say, “Wow, that evening walk is really helpful, and maybe I’m connecting with somebody during that time as well.”

So you know, exercise is huge. Eating well is really a big thing. And then also, if fatigue is a problem, which most people with MPNs really struggle with, cutting out unnecessary things. We live in this society where we’re constantly overloaded, and a lot of us are task oriented, and do this and do this and do this. And it’s really challenging to take a step back.

But one of the things that I discuss with my patients is, think about your day. What do you normally do in a day and what can you cut out? That is maybe part of self-care. But taking some time for them, or just simply not having to fill the day to the brim, if that’s maybe what they’re needing is to kinda take a step back and help manage that fatigue in that way.

So you know, these are some practical things that I generally talk to my patients about, and then of course there are a slew of other things based on perhaps what their main concern is. But in general, I like to talk to all of my patients about these sort of methods for handling those things.

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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