Is there any Support for Spouses / Partners?

[Sherry2]

Hi

A good friend pointed out to me that quite often the spouse or partner also suffer without any support or treatment.

We have been diagnosed with our illness and are being treated. Yes we all struggle with side effects and we someone to tell - either our partners or the heam.

They often have no outlet yet they are affected.

Does any one know of a support structure for partners before I approach him with this delicate subject?

Thank you all for being here an supporting each other

Sherry

[Mazcd Partner MPNVoice]

Hi Sherry, you are quite right, it is quite often that our spouses/partners/family members find it difficult to not only come to terms with our diagnosis but also how to help and support us when we are having a bad day, with fatigue or bone pain etc. This is why we decided that at our forums when we have the break-out groups we have a 'family group', it is sometimes easier for a spouse/partner to ask questions and get answers about how to cope etc when the person they are supporting is not sitting next to them, we also realized that it is not only 'us' who have the MPD that can benefit from having a buddy but also those around us, so if anyone has a spouse/partner/family member who would like to chat to a buddy to better understand how to help and support the person with a MPD then please email me at [e-mail], it really can help to chat to someone. Best regards, Maz.

[Sherry2 in reply to Mazcd]

Hi Maz

yes i hear the forums are very good, and i would like to book us on the next one asap.

Do you know if there are any groups for partners in the mean time?

Thank you for your great work on MPD, i am always on the site.

Sherry

[Mazcd Partner MPNVoice in reply to Sherry2]

Hi Sherry, no sorry I'm afraid I don't know of any groups for partners. With regards to forums, at the moment we have 2 confirmed for this year, Colchester on 29 Jan and Belfast on 25 Feb, details are on our website. Maz

[Twinkly in reply to Mazcd]

Hi maz .my husband took me to the forums organised in London in 2013 ,the one at St Thomases ,was really good for him ,he sat in the group for partners ,for the first time was able to get a word in ,,,he learned so much ,it's changed his understanding ,,we hope to attend the Colchester get together coming soon ,,,,thanks to you..

[mol56 in reply to Twinkly]

I hope to attend the forum in Colchester which is my local hospital. Was going on my own as I tend not to involve my husband too much but you have changed my thinking. I will suggest he attends too. Thank you.

[Aime]

Hi Sherry, I know I feel guilty when I am moaning and groaning - partners do have the MPN as well in a way! My hubby was not good about speaking about my PV but he is better now. Regards Aime

[Sherry2 in reply to Aime]

Hi Aime

my husband wont talk much either.

What worked for your husband?

Regards Sherry

[ilc72 in reply to Sherry2]

Hi Sherry

Everyone deals with it in a different way, even partners. My partner felt very positive to start with, sometimes too much so for my liking, but recently it seems to have sunk in and she's been quite tearful.

Speaking as a "bloke" it's often harder to express one's feelings and especially one's innermost worries and concerns. Often this may manifests itself in denial, sometimes even "it can't be that bad".

A diagnosis of cancer can test the strongest relationships and you may, like us, need help talking and communicating.

Stay strong....

Regards Ian

[Aime in reply to Sherry2]

Hi Sherry,

He's still not brilliant at talking but I said to him that I needed to talk about my worries and to keep him up to date. I pointed out he gets annoyed if I don't tell him something is wrong until I have had an answer from the medics so if he wants to know we have to talk!! Men!! Sorry - to the guys on the forum. Aime x