I would like to consult with someone who has been diagnosed with polycythemia vera. Should I tell all my family and friends, or keep it to a close circle? Who should I tell? I am confused.
Thank you all.
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Hello @Aziz1
Welcome to the forum, and thank you for taking time to post your question.
I’m so sorry to learn of your diagnosis.
I can relate to your circumstance a little after having had my diagnosis in April last year, I found it a very confusing and challenging time.
Deciding who to tell, who to tell first and when or even how is such a lot to process and I’m sure you’re feeling unsure where to start.
Personally, I found the more people I told the easier it got, but everyone is different so everyone approaches it differently and in there own way and own time.
You may find the forum link Who do I tell first and how? a good place to start and also the link Polycythemia may be another good starting point.
I started by reading the section Life with blood cancer | Blood Cancer UK and also Blood cancer: mind and emotions | Blood Cancer UK and i found these very helpful.
Don’t forget, you can always speak confidentially with our support services team for information and support 0808 2080 888
Do feel free to let us know how things go.
Take good care of yourself
Mike.
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Hello again @Aziz1, such a pertinent query and one I faced after my own diagnosis with Polycythaemia vera (PV). I see @GenesisDevice has shared some great links with useful info.
While I think we and our loved ones are all so unique and thus there’s no one right way to disclose such important information, speaking from experience of Polycythaemia vera (PV) I’d say take your time.
As you likely know, Polycythaemia vera (PV) is a chronic type of blood cancer and thus it develops slowly, if at all. I found this a relief and it gave me time to learn more about Polycythaemia vera (PV) and what I’d be living with. When it seemed the right time, if it came up in conversation, then I mention it and answer any questions.
Something that may be worth considering is whether you want to alert other family members to think about if they too were affected by whatever caused your gene mutation. A close family member of mine was also diagnosed with a similar blood disorder which made me seek my own testing.
These blood cancers aren’t meant to be hereditary but growing up around the same carcinogens can affect multiple people in a family. In turn I alerted younger family members so they had all the information they’d need if they sought their own gene mutation testing. My dad went on to be tested too and was thankfully negative for gene mutations.
To be honest, my loved ones have mostly checked their understanding of Polycythaemia vera (PV) with me once or twice and then that’s that! It’s just in the background of our relationships. They’re content that I’m okay and check in now and again to see if anything’s changed. I think I’d rather it be kept lowkey than a constant worry for my loved ones, and they trust I’ll tell them if things worsen.
I’m interested in how other forum members deal with this? How do you think you might @Aziz1?
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Perhaps the following might offer further ways to share a diagnosis: Telling family and friends you have blood cancer | Blood Cancer UK
Another link from Macmillans: How to tell people you have cancer - practical tips | Macmillan Cancer Support
And some broader ideas about living with MPN (Myeloproliferative neoplasms): Your state of mind – MPN Voice
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