(Louise) When I first was diagnosed, I…was like, everybody else just scared to death and not wanting to say anything...But…I have learned that they're never going to know unless I tell them what's going on.
(onscreen text) THERE ARE 2 SIDES TO EVERY MYELOPROLIFERATIVE NEOPLASM (MPN) STORY…
(onscreen text) FATIGUED
ITCHY
NIGHT SWEATS
ENLARGED SPLEEN
(onscreen text) LOUISE Diagnosed With Myelofibrosis (MF) in 2011
(Louise) …I didn't want to tell anybody…because people just didn't understand…
…No, you look fine. You are fine, but you're not really…
…it's hard for people to really understand what it's like going on inside you…
…you know… what's it feel like to sweat from the middle of your head? What's it feel like to itch all the time…
…but when you look the way we do, which is usually pretty okay, it's just hard for them to understand that you're really not okay.
(onscreen text) JOHN Louise’s Partner
(John) …When Louise was first diagnosed…I really didn't know what it was…
(Louise) …finally I said to him, you need to come to some of my seminars…hear the doctors talking… I'm just not faking this, it's for real…
(John) …it's devastating to whoever has it and to their close friends and family…
…just watching her going downhill, it just is the hardest part…
(Louise) …my symptoms have always been…the enlarged spleen…
…my fatigue has gotten a whole lot worse and now I'm starting to…have pain…but the pain is at night, so I can't sleep…
…My partner John takes pretty good care of me. He always figures out how I'm feeling, um, whether I need help to get up or get down…He's there…
(onscreen text) SHARING THE IMPACT OF YOUR MPN MAY HELP YOU GET THE SUPPORT YOU NEED.
(Louise) John listens a lot. He sees my good days…he sees my bad days and that can't always be fine.
…He does have a friend that he shares things with, and I think that helps him to get some of it off of his shoulders…
(onscreen text) IT’S ESPECIALLY IMPORTANT TO SHARE WITH YOUR HEALTHCARE PROFESSIONAL
(Louise) …In the very beginning…I didn't know that I was supposed to tell the doctor. I thought that was their job. Well, guess what? That's not the way it is. It was really difficult for me to be able to open up and say these are the symptoms I’m going through.
…my heart is saying, don't you see it? You know? But no, they don't. You look fine…
(onscreen text) FINE IS NOT ENOUGH
(Louise) …You need to inform them. You need to tell them how you're feeling…
You're the boss, okay?
(onscreen text) TAKE AN ACTIVE ROLE IN YOUR OWN CARE
(Louise) One of the things that…I made sure that I did...is try to educate myself…
…that's what, it's all about. Knowledge…
Myelofibrosis is not like most cancers. It's very different.
…you need to have a specialist…
…get a second opinion, a third opinion, a fourth opinion, whatever you need to do to make you feel comfortable on this journey…
…that leads you to be the driver of your own bus…And don't forget when you're driving your own bus, you have to have your own map to figure out where you're going…
…I now have a great oncologist or…specialist. And… whenever I have a question or a problem, I call them, and I don't wait either…cause I want to know what is going on…
(onscreen text) SPEAK UP AND SPELL OUT HOW YOUR MPN AFFECTS YOU.
(Louise) …hiding your burdens and how you're really feeling can really affect you…
…You need to let people in…
…You need to…get them on your journey.
…what’s it really like to be in your shoes…what are your symptoms? What are you going through…only you can inform them of that.
…some days, I just have to say, I'm not feeling so good today…
…You can’t always just be saying you’re fine…People just want to always think everything's rosy dozy…You have to let them know how you’re really feeling. Cause nobody’s going to know unless you share it with them.
(onscreen text) Learn more at FineIsNotEnough.com
(onscreen text) This video is sponsored by Incyte Corporation.
(onscreen text) © 2021, Incyte Corporation. MAT-HEM-02417 09/21
