The best way to share with someone about a MPN is to share the facts. Bearing in mind that the prognosis for ET and PV are a bit different than MF and the other MPNs, it is helpful to be specific about the diagnosis. I have PV, so that is what I talk to people about.

What I tell people is some variation of this. "I have Polycythemia Vera. It is a type of blood cancer known as a Myeloproliferative Neoplasm. This is a chronic cancer not an acute cancer. While it can cause problems, the problems can be managed. Many people with PV will live a normal lifespan if the PV is properly managed. It is like diabetes in that way. My plan to to manage the PV effectively and continue living a good life for as long as possible."

For anyone who missed it, here are several of us talking about our journey with PV. https://www.youtube.com/@PharmaEssentia

Hi Lisa best way to share depends on who is listening.

I was diagnosed at 47 it was hard even for me to understand what on earth this polycythemia Vera was I couldn’t even say the name let alone come to understand it was a blood cancer.
At the hospital they used the word neoplasm and I wasn’t quite sure what that was until
I googled it and got a fright!
My family and myself were in denial for a few years I guess it’s a bit blurry I was always going in to day hospital every other day so it was hard for my teenage boys but I guess they also decided not to talk about it much and when I did try to discuss things I got through to one of them who wanted to know everything in detail but my older son would always act uninterested and leave the room to be honest even today he is 25 he still acts vague and barely asks any questions! I tell them both everything through a slightly rose tinted lens.

It is always best to talk especially with family however we have to understand that they also need their time to digest this and scary info.
A lot of other more distant family members are clearly uncomfortable with this and never ask any questions even today when we meet on formal family occasions.

Sometimes I still feel as if I shouldn’t be at the hospital as if this is all a bit unreal even though almost 10 years have passed!
I am used to bring the therapist not the patient so I always feel as if I should be helping the other patients.

Best of luck with sharing
Hugs Jutka 💖

As Steve said, stick to the facts. And adapt the message based on the understanding abilities of the audience. But also, give yourself time to get comfortable with the diagnosis. I spoke to a therapist specialised in chronic illness and that helped also with the reactions of people regarding my diagnosis.
I started telling first to a relative who worked in health care and to another relative who is quite matter of fact. With them it was easy.
From experience, plenty of people will need time to digest this information and some might go in some sort of denialism.
For example, my very educated friends decided ET is an allergy, I had to tell them 3-4 times what ET is, that there is no cure, yet they told me "See you when you are cured." I have ET, there is no cure, so these people, several who have a pathological fear of illness and death, are not talking to me after I told them.
There has not been a moment when I regretted telling people, despite some cruel reactions. That is on them.
But it is good to tell people, despite some having immature responses and even stopping interacting with you. It is good to inform them from many reasons. It is good, as you are open and honest. Relationships benefit from honesty. It is good as you might need support. It is good they know in case of a medical emergency. It is good as we live in a society and helping each other is part of living in a society.
Someone who used to be closed to me told me "I wish you never told me." That was extremely selfish of them. They wanted to cancel the idea of illness and disability as they are not mature enough to cope emotionally with the idea they happen. That is on them. They are adults and their fear comes from ableism, not trauma.
On the good side, someone who knows I have ET and I was hospitalised for TIA checked immediately on me when I showed some out of the blue confusion. They tell me their health issues, I tell them mine, and we make sure to support each other.
There is no shame nor blame in illness.

I tell everybody that i have a rare, chronic blood cancer. I say it out loud to help me get used to it. I don't really care how anyone reacts to what I'm saying. It helps me normalize this crazy diagnosis.

I was diagnosed in November 2022 and have only told my three children. I feel like if I tell people, I will have to admit it to myself. Kind of helps me be in a bit of denial to not let people know.