RE: family denial

[Guest guest]

Hi Becky

I can only speak of mine. My father who had Leukaemia but has since passed away,

yelled at me that I DIDN'T HAVE 'MS' and that I was being ridiculous ever saying

that I did. I was formally diagnosed with it in Australia 9 months after he

died. My mother just refused to talk about it or even deal with my struggle to

walk or sit or do what I would normally - she yelled at me that 'I already know

ALL about MS!!! You couldn't tell me anything I don't already know!!'. She had

worked as a receptionist in a cancer surgery in the 70's, and she thinks that

THAT means that she knows EVERYTHING about EVERY illness there is! She therefore

then takes any explanation of the whys and hows as an insult to her intelligence

and capabilities! lol

So, as a result, I have moved to the UK and the only person who I speak to about

it is my rather-young-in-the-head husband. He is growing up now though......VERY

slowly though. He is not the sort to want to talk about it much so I just keep

doing my research and running my Facebook group. I'm happy just being an ear for

others' probs and trying to help where I can.

MT family have ALWAYS been very self-obsessed and throughout my life I never

been put before THEIR wants/needs........so it just IS what it always was. I'm

used to it and I have learned to get everything I need for myself and stay

strong without them.

Support and having someone to talk to about our fears etc is ALWAYS good, and

I've always been lucky enough to have REAL friends who have always taken the

place of my family when it comes to what 'being there for me' means.

My mates are on the other side of the world, but I always know that if I

desperately needed them, they'd be on a plane in a heartbeat.

THEY don't 'get' what 'MS' is all about either, but it doesn't change me in

their eyes......I am accepted, loved and adored by them and that's why THEY are

my TRUE family!

The only advice I can give you is to just keep on keeping on doing what you have

to do. My hubby doesn't like the whole 'research' thing either, but listens when

he sees the effects that NOT listening brings and has been on board with my

CCSVI research since I first spoke to him about it back in early '09.

Just be there for yourself sweety, and know that we are all here for you too!

Your hubby does mean well and does as much as he can I'm sure (you know that),

it's just that like mine I reckon, we just have to remember that it's a big

scary parade float of a concept which they'll NEVER stand on. Their perspectives

are different to ours, they're standing on the ground watching this happen to

us, with even less 'control' than we do over the whole thing. WE are th ones who

decide which drugs we'll allow them to give us, WE choose whether we want to go

for this diet or that supplement etc etc.

Whikst we don't have a choice in regards to how the disease will specifically

affect us, e can choose how we deal with it and how we shae our lives to 'handle

it'. THEY have NO choice at all......except whether they stay with us and love

us through it or go.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: beckyfatzinger@...

Date: Thu, 2 Sep 2010 04:44:58 +0000

Subject: family denial

I have been diognosed for 4 years now and my husband is real helpful when I have

epasodes but he doesnt like to to do a lot of research or go to support groups.

He says we will find out what happens when it happens. Is this normal for family

members to pretend nothing is wrong?