Re: loss of friends/family due to illness?

[Guest guest]

Hi , well, as far as I have been able to figure this one out, it’s

not only ME/CFS/Fibro people who experience this…but many, many with chronic

illness. Don’t let all those walkathons and pink ribbons fool you! 9 out of

10 women will be left by their spouses/partners (for instance) after they

develop a disabling chronic illness. There’s a couple of reasons…first, if

you are not able to participate in the lives of others as you once did, they

just kinda tend to move on. It’s like they have to step out of their own

lives to continue a relationship with you, and most folks are just too damn

busy, for one thing.

But, more importantly, it scares the pants off people to think that, if it

happened to you, it could happen to them. Most folks in our culture feel

(and are taught) that if they do everything right that they will not fall

ill, healthy lifestyle and all that. It gives folks an illusion of control

and safety that just isn’t real. And when they witness it happening to us,

it makes them very, very uncomfortable. It is easier to judge us, for doing

something wrong and therefore deserving somehow of getting ill, than to

admit that it could and does happen to anybody, and lives can be torn apart

just like that - snap.

The especially difficult attitude to ME/CFS/Fibro is just the icing on the

cake, bad press and medical confusion reigning for over 20 years, and an

overwhelming attitude that we are just neurotic rather than ill. This has

become the prevailing medical attitude as well. Just because the CDD has

recently come out with some nice PSA’s (ads, basically) does not mean that

most docs will give you the time of day. We are considered “heartsink”

patients, hard to diagnose and treat and just too much hassle for your

average, 10 minute appointment docs who prefer the easy answer and the magic

bullet cure approach.

I think many if not most of us have stories like this…and the more ill you

are or get, the more most folks back off. Back when I was a 30-60%

functioning ME person and had a life, albeit intermittently, I had lots of

friends and community involvement…but when I was in relapse they had a hard

time understanding that the disease was variable, and just because I could

do something one day didn’t mean I could do it another.

But since I had the bad relapse/progression almost 2 years ago (from which I

have not recovered, functioning @ 20-30%) that rendered me almost entirely

housebound, it has been like watching lemmings go off the cliff… I have few

friends left, and have been deserted by the larger community, despite all my

previous community service etc. But those few friends are the best!

As to family, mine prefer to pretend it doesn’t exist (or perhaps they would

have to actually step up and help out), but this is part of the larger

family dynamic anyway, so no surprise. Oh, yeah, and there’s also the

invisibility confusion…we are not missing a leg or a tit or what have you,

and may look “normal” to the average person…I’ve found this even applies

when I am in the scooter or wheelchair! I actually had someone (that I don’t

know well at all) say to me, when I was in the scooter, that “I shouldn’t

get deconditioned and dependent”…as if I would be riding by preference! The

nerve of some people!

Ok there are some of my musings on the subject…I wish you well and hope you

have a few good ones left as well in your life. TC, Aylwin xox

[Guest guest]

>

>

> I've read posts on cfs lists from people whose families and friends

have " turned their backs " on the person with cfs/fibro. I've had a

little experience with this, as well. Friends don't know how to help

so they disappear. Or, they get impatient with the ill person who

does not seem to be improving.

>

> Does anyone on this list have a story similar to this? Why does

this happen with these diseases and not as much, for example, with

cancer or other difficult illnesses?

>

>

>

While I can only speak for myself, it seems that long term trauma,

whether extended illness or caring for aging parents, allows our

lives to be weeded.

If we think of the people in our lives as a garden, you'll find there

are some hardy plants that last year after year, some lovely plants

that are really toxic weeds, and an assortment of everything else in

between.

When we get hit a rough patch, the weeds seem to catch our attention

as they fade from the plot. But, if we really look around, the hardy

plants are still there, growing patiently as we adjust.

I love and appreciate the " perennials " in my life, even if I don't

get to do the things I used to with them. They still appreciate me

for being me, minus energy and stamina. The hard part is trying to

articulate what I need from them, and vice versus, and learning how

to enjoy them within new limited guidelines. I've been working at it

for three years and still find it tough. How about you?

May we find peace within and pass it along.

DeAnn

[Guest guest]

>

>

> I've read posts on cfs lists from people whose families and friends

have " turned their backs " on the person with cfs/fibro. I've had a

little experience with this, as well. Friends don't know how to help

so they disappear. Or, they get impatient with the ill person who

does not seem to be improving.

>

> Does anyone on this list have a story similar to this? Why does

this happen with these diseases and not as much, for example, with

cancer or other difficult illnesses?

>

>

>

Hi ,

I think part of the problem is that people really do assume that they

know what CFS is. They thinks it means that you are a bit tired all

the time, possibly hypochondriac, and/or lazy.

I have found that if you educate people, they sometimes will come

around eventually. I have had that experience with my parents.

This means directing them to good websites, or printing out

information, credibly sourced (for example, from a government

website). This is because they, unfortunately won't take your word

for it. However, if you show them that even the Government, and many

other credible sources, and specialists all say the same thing, they

can't really despute it.

Ofcourse the flaw with this plan is that they have to read it, which

often people won't do (because they think they already know). I have

sometimes made a point of watching them until they actually read it.

If people simply won't listen, and refuse to even try, it is usually

not worth expending any (precious) energy banging your head against a

wall.

It is hard to lose friends due to illness, but I always tell myself

that the ones who abandoned you obviously weren't really good friends

anyway. I always make a point of telling those who have stuck by me

how much I really appreciate them.

Goodluck, and take care, ness.

[Guest guest]

Sadly, this is one of the reasons that CFIDS people have so much depression.

I think a lot of it is in the name itself. Fatigue is a common feeling that

90% of Americans feel when they are overworked. They don't realize that

this is not that kind of fatigue.

There are also a lot of " We don't knows " with this illness so if the medical

profession doesn't have concrete answers, how are we suppose to?

I think that it happens to people with other illnesses also especially if

they don't get better. Our society is hyped up for " running in the fast

lane " and if you aren't there, well you just need to take some vitamins, do

some excercise, eat right, loose some weight, think positive, etc., etc.

Everyone wants a neat, easy pat answer and you aren't going to get one with

this illness.

You need to surround yourself with only those who are understanding, even if

it's one person, you are blessed.

Take care,

[Guest guest]

This tends to happen to people that have chronic

illness or a terminal illness. People see their own

mortality around these situations. They see what we

struggle with and I think sometimes it may be more

than they can handle. Although, not everyone loses

all their friends during this time. I've made some

great friends that are healthy, while I was working on

being diagnosed with FMS and then RA, and now another

diffuse connective tissue disease. I think that the

friends I lost, perhaps, weren't really " friends " at

all! I love the garden analogy De Ann! I'm going to

save this post

[Guest guest]

,

?

Unfortunately yes, I know exactly what you are talking about. Many friends and

family members just can't understand cfs or fms and no amount of telling them

seems to change it. I don't know about everybody else here, but I don't invite

people over or go out on my bad days, so people only see me at my best. I

actually had one " friend " ask me why I don't have people over when I'm feeling

really sick so they can see what it's like. Why would I do that? Hey guys, come

over and see me not get out of bed!!!! Watch as I try not to pass out and fall

down the stairs on the way to the kitchen!!! Other people just don't think it's

" fun " , that it's too depressing for them, because we're not jumping up and down

smiley happy all the time. Yet others just get frustrated that there is nothing

they can do, and not much we can do, to make us better. So combine

misunderstanding, frustration/boredom, and a sense of impotence, all of which

can get worse the longer you're sick...it's just not a winning combo. I'm glad

that no matter what, my family supports me. My mom has fms, so she genuinely

understands. The rest of my immediate family may not quite get it, but they try.

My extended family...really none of them quite get it. That can be super

frustrating. But again, I know they still love me and I have their support no

matter what. I never knew until my friends were gone, and some big things

happened, how much my family really means to me. I hate that my former friends

have undermined my trust in other people, and at times my belief in myself. It

makes it hard to open up and make new ones. I'm such an open, honest person that

I trust people with personal stuff and end up regretting it later. I'm hesitant

to get in any romantic type relationships either because I don't know what kind

of guy would want to deal with all my health problems.

Alia

[Guest guest]

Thanks Aylwin. I'm trying. I might even be succeeding at gathering a few new

friends . But I'm having trouble resisting holding them at arms length and no

closer . I really don't want to get hurt by trusted friends again. And thanks

for saying I'm a great person. That means a lot.

-Alia

[Guest guest]

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of litleqtee@...

Sent: Sunday, April 06, 2008 11:30 PM

To: CFAlliance

Subject: Re: loss of friends/family due to illness?

Thanks Aylwin. I'm trying. I might even be succeeding at gathering a few new

friends . But I'm having trouble resisting holding them at arms length and

no closer . I really don't want to get hurt by trusted friends again. And

thanks for saying I'm a great person. That means a lot. –Alia

Hi Alia, well it’s only the truth is all. You know, there’s no hurry to

enter into absolute trust with new friends right away – just take things

slow, step by step, see how they really are over time…that’s how to develop

true trust I think. TC Aylwin XOX ps Cool about the wildlife centre!

[Guest guest]

I agree! Trust is something that has to be earned:)

[Guest guest]

I've caught some of the responses in this thread and wanted to say

first, I'm very sorry for the pain and abandonment some have had to go

through with family and friends. It's pretty darn scary when you

develop some unknown, incurable condition and losing support during

that time makes it so much worse. I hope that you either find more

understanding people in the future, or your current loved ones come to

offer what you need.

Anecdotally, it seems common for there to be a loss of support for CF

sufferers, particularly during the early stages. From my own experience

and from observing others, this speaks much more about the quality of

people around us than the demands of the condition itself. I see a

chronic illness like a magnifying glass for our life and our

relationships -- it's going to amplify what's already there, making the

existing problems more visible. I've found that in many areas the

condition is not the cause of those problems, it's simply removing the

element that kept the dysfunction at status quo. Which can mean a

dramatic change in our relationships.

Before I became ill I was very self-sufficient and in retrospect an

over-giver. Those 2 things combined meant I had unwittingly surrounded

myself with self-involved takers for friends and partners. When the

dynamic changed (I developed CFS/Fibro) and I began to ask for an equal

return, they responded like petulant spoiled children. More concerned

for their own perceived inconvenience than the dramatic change I was

going through.

I lost a lot of friends when I became ill, it was certainly painful at

the time. But none of them were worthwhile additions to my life, none

of them are missed. And their departure made room for a better quality

of persons. Someone on another forum had said that when you have so few

" spoons " you can't afford to throw them away on the wrong people.

I've found that while having poor support can initially seem better

than having no support, in the end the stress of it deteriorates my

health and it's really doing more harm than good. Letting those people

go from my life leaves more room for people who will contribute

positively instead.

So by now I have no energy or patience for " vampires " :

people who just take and take;

people who are so self-absorbed they can't see the absurdity in being

mad that I didn't return their phone call right away, rather than being

concerned for my health;

people who don't respect my time or energy, or the limits;

people who are emotionally controlling or manipulative, sucking up

whatever energy I do have;

people who cause so much stress or drama that they make me feel worse

(physically and mentally).

Anyone who exhibits those behaviors gets a warning or a brief mental

probation. If there's no change, they're out. One of the few upsides to

having a chronic illness is it makes you very decisive and discerning

when it comes to relationships, by necessity. It also makes you quick

to recognize the duds and weed them out early.

For me it comes down to 2 things: Are they contributing anything

positive to my life? Do they add more stress to my life? I don't expect

everyone to understand this strange and unfamiliar condition. But f

they fail both of those questions, then they don't deserve my company.

I also think it helps to be realistic about my expectations for those

who aren't particularly close with me. I specifically don't tell my

extended family about my condition. If I only see someone once a year,

we don't have the depth of relationship to explain the situation, nor

for me to expect them to " get it " . Telling them would just cause

unnecessary drama for me and in no way helps our connection. I don't

tell the neighbor or a co-worker because they have no vested interest

in learning more about the condition or how it affects me specifically,

due to the casualness of the relationship.

My immediate family was never particularly involved in my life, so it

was silly for me to think they would be when I became ill. It took me

awhile to realize this, though and I was initially resentful for it

(admittedly I still am at times). I can now see that they aren't being

self-absorbed or callous because of my condition, they're just acting

the way they always have. The condition just made me see their behavior

much more clearly. So I don't share with them anything about my

condition or how it affects me. Which works out fine: I'm not relying

on them so I'm not let down, they're not involved so they aren't

contributing negativity.

Anyway, that's my own experience with family, friends and partners.

Dyno

[Guest guest]

> I see a chronic illness like a magnifying glass for our life and

our relationships -- it's going to amplify what's already there,

making the existing problems more visible. I've found that in many

areas the condition is not the cause of those problems, it's simply

removing the element that kept the dysfunction at status quo. Which

can mean a dramatic change in our relationships.

>

Dyno, this is so true it ought to be in big bold purple letters on

the front of every marriage (and birth) certificate.

Chronic illness is only one of the disasters that can befall a

relationship. Others include job loss, death of a child, bankruptcy

or basically any major stressor that can't be fixed overnight or with

one good fight. A great many marriages do not survive big stressors,

and you have neatly stated why: the stressor magnifies the existing

problems to the point where they can't be ignored any more.

I also found your description of 'vampires' highly accurate. My only

sister is such a drama queen that she's simply too exhausting to have

any contact with beyond a rare two-line email. And my parents/brother

weren't exactly pinnacles of emotional support before I got sick. I

didn't bother to tell them when I was getting much sicker until it

was necessary. They still couldn't make sense of my words by phone,

so me arriving at a family supper in a wheelchair with an oxygen hose

hanging from my nose was a big shock to them all. Which they still

automatically forget whenever I'm out of their sight for a few

months. Denial is an art form in my family.

Fortunately, I have a supportive spouse (who is no more clueless than

the rest of his ilk, and more clued than many) and pretty good adult

kids. So my daily life is okay, if not exactly a social whirl any

longer.

Getting rid of the people who drain your energy can be a big stressor

when it is happening, but thoughtfully assessing relationships and

putting your scarce energy only into the good, beneficial ones is a

step any of us can take at any time to move our daily energy use

(our 'spoons') into better channels for our lives.

Jayne

[Guest guest]

dyno, YOUR POST IS EXCELLENT. IT IS UNFORTUNATE THAT YOU AND WE HAVE TO GO

TROUGH SOOOOO MUCH TO OBTAIN THIS WISDOM THAT YOU HAVE GAINED.THANK YOU SO VERY

MUCH FOR TAKING THE TIME AND ENERGY TO POST IT. ABSOLUTELY ACCURATE AND A GOOD

REMINDER THAT I NEEDED TO READ FOR MY OWN PERSONAL SITUATION. DIANE

I've caught some of the responses in this thread and wanted to say

first, I'm very sorry for the pain and abandonment some have had to go

through with family and friends. It's pretty darn scary when you

develop some unknown, incurable condition and losing support during

that time makes it so much worse. I hope that you either find more

understanding people in the future, or your current loved ones come to

offer what you need.

[Guest guest]

jayne, excellent post. So true. If I arrived @ a family get together in a

wheelchair with oxygen tube nobody would notice or say anything. Never

underestimate the power of denial. Thanks for posting that. Diane

gahjra wrote:

> I see a chronic illness like a magnifying glass for our life and

our relationships -- it's going to amplify what's already there,

making the existing problems more visible. I've found that in many

areas the condition is not the cause of those problems, it's simply

removing the element that kept the dysfunction at status quo. Which

can mean a dramatic change in our relationships.