Caregivers’ MPN Stories
What can caregivers do to help support loved ones affected by myeloproliferative neoplasms (MPNs)? Watch caregivers talk about why it’s important to keep track of any and all symptom changes and encourage loved ones to speak up and spell out the impact of their MPN symptoms—especially with their MPN Healthcare Professional.
(Caroline) I always thought a caregiver was someone who cared for someone who could not care for themselves. Ultimately, it's just about…supporting whatever it is that he needs….
(onscreen text) FACING THE FUTURE TOGETHER
I ADVOCATE FOR HIS CARE
NO ONE SHOULD DO THIS ALONE
EFFECTIVE COMMUNICATION IS KEY
(onscreen text) CAROLINE Wife & Caregiver of Eric
(Caroline) My name is Caroline…I've been with Eric for 16 years, and in 2019 he was diagnosed with polycythemia vera or PV.
Before Eric’s diagnosis, we were just sort of going through life—oblivious to the cares of the world.
Eric started having symptoms…maybe even five years before we actually got the diagnosis.
(onscreen text) ERIC Diagnosed with PV in 2019
(Eric) The symptoms popped up almost one by one, and they seemed unrelated…
(Caroline) …turns out they actually were.
(onscreen text) PV IS A PROGRESSIVE DISEASE, WITH SYMPTOMS THAT CAN CHANGE OVER TIME
(Caroline) The first symptom I remember him having…was the itchiness.
…he struggled from the fatigue a lot…. He started to get the inflammation, specifically in his feet.
I was trying to get him to talk about it…”How are you?”… “How do you feel?” …And he would sort of resist that a little bit.
…he would just tough it out…. He will tell you he's fine.
(Eric) It didn’t do me any good… It delayed my diagnosis. It delayed the things that I needed to do to put myself on the path of a lower symptom load.
(onscreen text) ALWAYS SHARE ANY AND ALL SYMPTOMS WITH YOUR HEALTHCARE TEAM, EVEN IF YOU DON’T THINK THEY’RE RELATED TO YOUR DISEASE
…BECAUSE THEY COULD BE
(Eric) By saying I’m fine might make it easier in the moment, but…in the long term, it’s not gonna do you any favors.
(onscreen text) CAREGIVERS CAN HELP YOU SPEAK UP—AND SPELL OUT HOW YOUR SYMPTOMS AFFECT YOU
(Eric) I’m not one to broadcast how I’m feeling…but Caroline has…taught me to be more open with those kinds of things, because I think it's helpful for her to know…because she is a caregiver, ultimately.
(Caroline) You know, I think for him, so much of health and wellness is, is a mental state…because he doesn't want to tell himself he’s sick…
…over time I have learned that he just speaks a different language.
And sometimes it's listening to what's not being said…so it's sort of like listening with my eyes….
She's learned how to listen to the things that I don't say.
And I trust that he’s going to tell me whatever it is that needs to tell me for his own health and wellness.
(onscreen text) CAREGIVERS CAN TURN SYMPTOM TRACKING INTO A TEAM EFFORT
(Caroline) Sometimes his symptoms will flare up though…and we don’t really know why.
(Eric) I'm always asking my hematologist and PV specialist…can we track the symptoms…so that we can see any kind of progression that may happen over the years?
(Caroline) For us, at home, it’s a lot of communicating….
(Eric) She likes to be…part of my process. So, my state of mind, my physical state is…something that we share.
(Caroline) We really try to be there for each other. And, so, this was really no different than that. Just like, okay, this is what we’re doing now. We’re gonna work on this….
(onscreen text) CAREGIVERS CAN ENCOURAGE OPEN, HONEST HEALTHCARE COMMUNICATION
(Caroline) As a caregiver…one of the—the best things that I can do for Eric is to be an advocate for him during appointments…being a second set of ears…
…sometimes I'll think of questions that he doesn't, I'm always writing notes….
(Eric) …it's a huge help to have her being a voice for me….
(Caroline) …we’re just a good team.
Eric has done a really, really good job of being open and communicative with all of his healthcare providers…I don't believe he holds back anything……nor should he, you know…this is what they're there for.
(Eric) My advice to other patients is to…be honest with yourself as well as with your partner and your physician team.
(Caroline) Don't be afraid…to communicate as you see fit.
(onscreen text) BUT CAREGIVERS ALSO NEED TO SPEAK UP—AND SPELL OUT HOW THEY FEEL
(Caroline) I have been guilty of saying that I'm fine when I'm not….
Giving it voice, you don't have to carry it anymore. You can let it go…and that’s what it did for me.
…I get lots of support from my best friend… I try to exercise…as much as I can.
I'm a Reiki master, so I get energy work regularly and massage…I try to make sure that I'm not just…giving, giving, giving all the time. That’s not sustainable.
I'm pretty good with my self-care and whatever it is that I need to do…to stay good for both of us.
(onscreen text) BECAUSE FINE IS NOT ENOUGH
(Caroline) Being fine is not enough for me. It's not enough for Eric. It's not enough for anyone.
(onscreen text) Learn more at FineIsNotEnough.com
(onscreen text) This video is sponsored by Incyte Corporation.
(onscreen text) © 2022, Incyte. MAT-HEM-03016 11/22