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When Myeloproliferative Neoplasms Aren’t Visible to Others

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Published on January 13, 2020

Key Takeaways

  • Blood cancers don’t always make people look sick externally even though they may not feel well.
  • Talking to friends and family about what’s happening inside your body can open discussions about support.
  • It can be hard for care partners and friends to realize symptoms are happening.

Myeloproliferative neoplasms expert Lindsey Lyle from the University of Colorado explains why, although MPNs have a high symptom burden, patients may not show external signs of suffering, and it can be hard for others to see. Watch as Lindsey suggests ways to open up a dialogue, and find support from family and friends. 

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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Transcript | When Myeloproliferative Neoplasms Aren’t Visible to Others

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:               

How do I deal with my families and my friends who look at me and they don’t think anything is wrong? I mean, I’m sure you hear that quite often. If you can just give us some quick advice about that, what you would tell your patients.

Lindsey Lyle:                

Sure. I would say that this is certainly a very common thing that I hear, and especially because where I work, too, we take care of all sort of blood cancer patients. Some patients may appear more sickly than others. And so even I have patients, you know, who are sitting in the waiting room and come in and they think even themselves, “I should feel fine because I don’t maybe look different,” perhaps.

And so I think that to answer this question, I remind my patients that their disease is a disease of a very large symptom burden that other people cannot see or experience. And just to remind them that, you know, we know because of what’s going on inside of your body, these sort of symptoms are occurring.

And they’re not things that kind of glare you in the face, and so it’s hard for care partners, family members, friends to see these people that they love so much, and they look the same, so they feel like there is nothing wrong.

So I just generally try to encourage them to just be open about the fact that their disease is one that is not external. It’s an internal disease, and there are chemicals inside of the body and different pathways that are hyperactive that are causing these sort of symptoms, but it’s not visible to the eye.And so just number one, affirming them, that I know that they’re experiencing these different symptoms of not feeling well and what have you. First affirming that I know that’s really happening. And then number two, trying to explain a little bit more about why maybe somebody isn’t looking at them and seeing them appear different, but it’s okay for them to kind of share what’s going on inside of their body is the reason for why they’re not feeling quite as well.

It also might be treatment related, too. You know, it might not just be the disease. It might be perhaps if they’re on a therapy that’s kind of making them more tired or what have you. And so we know, just very basic biology, that medications can make us feel a little bit different, and some help and some maybe don’t, or there are different pluses and minuses.

And so just to remind my patients that they can really kind of try to break things down, and I try to break things down on an individual basis, but they can go back and tell their family members. And then generally that opens up a discussion for how can that family member or caregiver or friend really kind of support them in exactly what they’re feeling.

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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