Recently diagnosed with ET and considering how/if to inform my family - What did other people in this forum do?

[Alired]

[boltfromtheblue]

Hi, when I was dagnosed I made the decision not to tell my family because I did not want my elderly parents to worry. After my parents had died I started to tell my other family members and they are being very supportive. Personally, I feel the most important thing is not to bottle things up. Good luck with whatever decision you make.

[sussexgirl]

Hi. I would agree, do not bottle anything. If you don't want to tell everyone then don't! But I would advise you spoke to someone, just so there is someone for you to talk to. It is something that most people don't understand (as many people on here have said) its hard on you . Keep it simple, tell people as you feel the need, after all, this is about you not everyone else!

[tinaj]

I am very lucky in the fact that both my husband and mum have been to my hospital appointments with me. So one or the other is there to listen and take in what they are saying.

I do agree with the both don't bottle things up as it will only make it harder for you in the long run. The best way I found to tell them (after my G.P. had told me I had got to go to see my hem after routine bloods and saying that it COULD be cancer), was to tell them that I had ET at the time and if they wanted to find out more they could read about it on MPD voice. I have now gone into MF.

It saved me having to try to remember all that was entailed with these diseases and also reminding myself that there was something seriously wrong with me.

I hope all this makes sense as I do rabble on at times

[audreyk53]

I only have told my husband, daughter and a few close friends. I wish I had the courage to put it out there but I really don't want to be treated differently. Good Luck with whichever decision is right for you.

[Alired]

Thanks for all of your comments, very helpful. At least with this complication we have time to decide what is right!

At the moment my opinion is that the news spoiled my day, so why should I spoil the day of others who are close to me (at least for now). Especially when I have everyone here to talk to!

Great forum and again thanks for all of your posts.

[JediReject]

Hi Alfred. You posed a tricky question which I guess might boil down to whether your loved ones would expect to be told first and be there to offer moral support or more if you have a bad day say and be hurt or feel slighted if they werent told until you felt ready or for some reason were forced to spill the beans. I decided to tell my nearest and dearest from the off because I didnt want them hearing it from anyone else or even someone who had seen me in the local hospital as its always packed out and theres usually somebody I know or who knows my family.

The only concession was I waited until my diagnosis was confirmed and I had a little more to actually tell but you still gets loads of questions you cant answer.

Good Luck to you and next time post an easier question haha. Cheerz

[Elvis-Fan]

Hi there, I have told people, family, friends and work colleagues, everyone is supportive and understand if I have 'down' days, even if they don't understand much about the illness itself. No one treats me any differently and if I need to talk to someone I have an ear to bend or a shoulder to cry on pretty much wherever I turn. My husband or my mum come to my appointments with me, I have a tendency to only listen to the bad stuff so it's nice to have someone there to talk to afterwards and they refocus me. if I didn't tell anyone I would feel as if I had a secret and we don't do secrets in my family.......my mum sees to that the more awareness there is of MPD's the better in my opinion but everyone has there own reasons for telling or keeping quiet. All the best with your decision.

[Mwalimu]

Hi ! When I was first diagnosed was very shocked and literally nursed it to myself but then decided to tell close family. Started by telling them had ET and, while not good could be worse since it was not like other cancers leading to secondaries. Then, gave them the correct name to look up on the web stressing had been told it could be treated successfully medically and need not shorten my life. I think it's important for others to know because of the tiredness. If people are used to putting demands on you because you have never had any problems, they may need to realise they should be more considerate in future! Hope all goes well.

[Aquaphobe]

I have always been the sort of person who cannot hide my feelings and my face tells whether I am fibbing so i have been upfront from the beginning with everyone. My father had leukaemia so I thought I had the same. I was diagnosed with PV so at first I felt a sense of relief. We are all very different and some of us like our privacy and others want the story to be told but I would recommend that you at least confide in thos closest to you. It took me a few years to come to terms with my condition and without the support of my family I do not think I would have been able to carry on full time with my job and take ineterferon Alpha. ( noe on Pegasys)

I find that it is a double edged sword but I have found that some of my friends have looked at life differently and count their blessings... a bit like the boostp we can get from watching the paralympcis and the achievements of those who are so "disabled"

[nicki2]

i would tell your family as you will need there support and help i do not know where i would be without them i got it in 1994 i am now 46 so i was quite young when i got it it helps if you have support of your family your consultant and also a gp who is fully versed in et main thing try and keep positive it helps you and your family

[sheldale]

Hi, I feel this has to be your decision but all i can do is say is what worked for me and why.

My mum died some years ago and as she had not told me she had cancer we never got to really talk about it together, I understand why she did not tell me as we had always been very close and she thought she was protecting me, but I still feel I was unable to be 'there' for her when she needed to talk about it. After this experience I promised my children that I would always be truthful with them and not withhold any information and they now know that what I tell them is the whole story which, as my daughter says, gives them the peace of mind that there isnt something hidden that i am not telling them. They get told everything from every hemo visit.

As I say you know your family best and i am sure they will be with you whatever you decide.

[stefany_nicole]

Alired: I'm sure by this point you've figured out what you're going to do, but I felt compelled to weigh in here.

I'm guessing that just by asking this question to the forum, you're concerned how your family will receive this news, but also how they will receive YOU now that you have a health issue. YOU need to get the support that YOU need first. Get informed, do your research, talk to your doctors. However, deep down, I'd guess that the support you really want the most is your family's support which is why this decision is weighing heavily. It's very hard to keep a health problem a secret. Even one like ET that's just below the surface.

That being said, I'm not saying you have to wear it on a T shirt and go running through the next family reunion screaming, either. You can choose how much of your process to share with people. The more you know about ET, the more you can piece together what's happening and be ale to explain it to someone else, easily. If you're newly diagnosed, it's pretty terrifying. If you're anything like where I was, it's a total shock and you can't get a straight answer out of anyone just yet. Plus, there's all these buzzwords that can get pretty overwhelming.

I guess the bottom line to my ramblings is that it's your body, your health and your choice what parts of that to share with people, but don't discount the fact that they just may surprise you and step up in a big way.

[basilmaaeo]

Hi,

Wanted to share my thoughts on this dilemma! I was diagnosed with MF in March this year(2012) and my husband has been there with me every step of the way (xx ) so in the early days we were able to work through the diagnosis and treatment together.

Once I had been fully diagnosed and started my treatment we made the decision on what to tell family and close friends with the help of the nurses in the Macmillan unit in my hospital. We have told them it’s an early stage, slow growing blood cancer, but I have a good prognosis and am on medication to control things. Despite the initial shock (especially as my Mum died of Leukaemia and yes, I too thought it could be what i had), they have taken it well and are very supportive.

We made the decision not to tell people exactly what it was called as we didn’t want them 'googling' and reading things that may not relate to my stage.

For my son who had just turned 17 and was also going through his own teenage angst, he was not given the 'C' word, but is aware of my regular hospital appointments, on-going medication and the possibility of things turning worse when I am a fair but older (I hope!).

However having had 7 months to work out how I come to terms with all this, I am now reaching the stage when I feel I want to let my family know what it is by name and point them in the direction of the MPD website.

As for my son well I am still unsure here, he is coming out of the 'terrible teens' and don’t want to upset his life?

any thoughts on the last dilemma would be appreciated.

Above all keep smiling and make it 'live with you, not you with it' !!

[Alired]

Hi Basil,

Thanks for your thoughts and post...

Its been a month since I asked this question and I doing exactly what you are doing. Just telling people close to me I have a blood disorder but is under control and my prognosis is okay.

I am intrigued by your question regarding your son. You say terrible teenage years and angst. He is an adult now and don't underestimate him. Perhaps if you tell all he will respect you more for trusting him and for not withholding anything. I obviously don't know him at all and don't know how he would react, but you might be surprised.

Cheers,

Al

[basilmaaeo in reply to Alired]

Hi

Re my son I think you maybe right .. just need to find the right time I suppose.

thanks for your thoughts and support x