• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

My father on same page as Dr Oz & co

Messages
26
Luckily my husband & my closest friends understand cfs completely and are 100% supportive, but my father and my brother have been insisting that cfs is mental and that none of us who have it are really ill, and that if we really wanted to we would be fine. Even now that xmrv is out they still have the nerve to say, yeah, so what, if you think positive and work out your immune symstem can beat it. No matter what I tell them, no matter what I have them read, they simply refuse to understand. Anyone else here having these problems ?
 

Marylib

Senior Member
Messages
1,155
Haha!

Yes it certainly does revolve around them!

Sorry for this Garcia. Believe me, many of us are in the same boat.

WE understand -- you always "cyber-have" us.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Yes it certainly does revolve around them!

Sorry for this Garcia. Believe me, many of us are in the same boat.

WE understand -- you always "cyber-have" us.

Its *gracie* not me! Easy to confuse the two names (I've done it myself).

I suppose I should get myself one of those fancy avatars. Or I could just rename myself Mr X (MRV).
 
K

Katie

Guest
My dad is under the impression that one day I'll wake up and I'll be fine and it'll be gone. It took me a while to realise that's what he needed to believe to come to terms with it and for it to fit with his idea of how the world is. Something that comes about unexplaned should be able to leave just as quick?

Unfortunately for a lot of us, our families end up fitting our illnesses into their world view in a harmful and hurtful way to us. I'm sure it's easy for them to think that you're not actually ill or being harmed by a retrovirus and that you're just a bit of a neurotic woman who needs to get out more. They get to sleep at night, you will get better eventually and everything is rosy. Their world view is so set that new evidence can't penetrate yet.

Hopefully XMRV will pan out and you'll get a piece of paper and lots of media attention that says 'this is what this is, this is what it does and here's what we can do about it'. Maybe that will be enough, when the 'it's psychological' herd begins to thin, then your family might come round. Often the damage feels like its been done, they shouldn't have had to wait for a blood test, your words should have been enough.

I hope at the very least you can adapt to their attitude even if you can't change theirs. At least we have some modicum of control over ourselves and our outlook, tricky as it can be.
 

V99

Senior Member
Messages
1,471
Location
UK
There is hope.

My mum always supported me, my dad took a long time to understand, but he never voiced an ignorant opinion to me. However my aunt and brother have taken a lot longer.

My aunt was a nurse and she very slowly over the last 16years has come around. She used to say that I "would just have to learn to pull myself together", that changed to, "you don't look well". My twin brother on the other hand (I'm a girl by the way, in case you think we are identical) he's still stuck, but I know one day I will get through to him. I tell my mum, I don't want to be treated with kid gloves, just respect and understanding, for example, If I say I cannot do something, accept it, move on.

This is a part of the tragedy of this disease. It damages relationships for other family members. The illness doesn't cause this, but the lies and manipulation do.

I find, that when he attempts to belittle me, I remember that I haven't given up on him, and that he isn't in on this crazy secret, that we are all keeping from so much of the world, and that I don't want to treat him the way I am being treated. Enough of that happens already.

:D
 

JMK

Messages
28
I am so sorry that you're having to deal with that from family Gracie. I can relate, I guess most of us can. My parents and brother are the only ones who take this seriously. Over the past few years, I've lost all but a couple of friends, and even my husband and the rest of my family refuse to believe how sick I am. Maybe that's their way of coping, I don't know. It seems that the only people who truly understand are those who have it. I hope that I live long enough to see the truth prevail and become common knowledge. Until then, I am so thankful for this forum. The folks on here are truly inspiring. Everyone is so intelligent and thoughtful and even on my darkest days, their humor makes me laugh.
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
What I've decided is that these are the same people who still say the earth is flat, so I won't pay any attention to them

Well said, Wildaisy,

And Gracie, no matter what anyone says or thinks, you've just got to believe & trust in your own reality - you know you're sick, and that's all that really matters.

All chronics with invisable illnesses face the same frustrating & hurtful situations.

And while I feel the same as you, I know, deep down, that I can only be hurt if I allow myself to be hurt.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Sorry Gracie

My dad feels the same way only he's too frightened to say it too my face.:D:D:D:D:D By the way.....his fears are valid.

As difficult as it is you must stop talking to them about it and find your support elswhere.

Luckily my husband & my closest friends understand cfs completely and are 100% supportive, but my father and my brother have been insisting that cfs is mental and that none of us who have it are really ill, and that if we really wanted to we would be fine. Even now that xmrv is out they still have the nerve to say, yeah, so what, if you think positive and work out your immune symstem can beat it. No matter what I tell them, no matter what I have them read, they simply refuse to understand. Anyone else here having these problems ?