Wednesday, August 26, 2009

Living Alone with CFS

 

HUMAN INTEREST FEATURE
 
Chronic fatigue syndrome
makes life difficult, but for
people with severe symptoms,
few resources and no hands-on
assistance, even the barest
essentials are hard to maintain.
One Association member
shares her front-row view
of life in dire straits.
 
QUICK LOOK•
 

.
Some people with
CFS have so few
resources and such
limited assistance
that they aren't able
to piece together
an adequate quality
of life.
 
.
These people with
CFS often feel
marginalized and
unseen not only by
society at large but
even by those within
the CFS community.
 
.
By confronting the
marginalization of
the disabled sick,
everyone with CFS
and society as a
whole will benefit.
 
A Postcard
from the
Edge
 
BY GINA KERNER, CFIDS ASSOCIATION MEMBER
 
C
C
hronic fatigue syndrome (CFS) has been called a
catastrophic illness, which it most certainly is. Yet
articles and books—sometimes even ones written
by people with CFS—don't always reflect just how catastrophic
it can be. For the most part, published writings
seem to describe the ways people manage, pace and cope.
While such strategies are important and must be shared,
they speak primarily to people who have enough help from
friends and family, enough housing stability, enough medical
care or enough physical and mental function. In short,
some combination of several "enoughs" gives them the
material with which to rebuild a life.
 
Unfortunately, not all of us struck by this illness have
enough supportive factors to combine to produce a manageable
life. Social and financial structures can crumble when
people become disabled. This is true for everyone, but some
are left with even fewer resources than others. And some
people struggling with this devastating illness have next to
nothing and no one to help them.
 
It's not my intention to imply that CFS doesn't cause
great suffering for people in supportive circumstances. It's
my intention to bring to light those people living in dire
straits, to look beyond the "coping face" CFS that's so often
presented to reveal the blemished and unsavory rawness in
which some of us live.
 
I've encountered many people with CFS who aren't
able to get by. Some don't have enough money to meet
basic survival needs. Some have no spouse, family or
friends providing hands-on assistance. For these people,
even simple pacing and rest can be out of reach as they
expend all their energy just to stay alive. The experience
is grueling.
 
For some people with CFS, the bare bone tasks of living
and self-care don't take place. They don't eat when they
can't get up. They aren't able to get groceries for weeks
because they have no transportation or assistance. They're
 
THE CFIDS CHRONICLE FALL 2006
 

HUMAN INTEREST FEATURE
 
so exhausted or cognitively impaired that they can't maneuver
through the steps involved in seeking medical answers,
much less carry out advice given by doctors. Many of them
don't have health insurance or the money to pay doctors
and other health practitioners.
 
For some people with CFS, housing is unstable.
Financially strained and without enough help, energy or
mental focus to effectively seek potential sources of assistance,
their precious energy is consumed by repeated relocations.
Others find themselves in substandard housing,
such as old spaces with mold that sickens them further or
tiny living quarters that make the housebound feel as if
they're in a jail cell.
 
I've even known people with CFS who have no housing
at all—living instead in an RV or a car. Exposed to the
elements, these people with CFS spend their energy trying
to stay cool, or warm or dry. They exhaust their mental
resources figuring out where to park, where to get cleaned
up and how to avoid detection.
 
And there are some people with CFS who remain in
dysfunctional, even abusive, relationships because they
don't have the means or physical energy to venture beyond
their current existence.
 
Again, these illness experiences are grueling. They are
unmanageable. For people whose health and resources have
been truly decimated by CFS—myself included—there
simply are not enough ingredients to cobble together
an adequate quality of life.
 
tinue to search for ways to reinvent their lives in the rubble.
Yet many in such dire straits don't know how long they can
continue this type of survival. Surrounded by able-bodied
people who live comfortably—and even other CFS sufferers
who manage, with sacrifice, to cope reasonably well—
they sound an SOS, but feel largely unheard.
 
Victim as a four-letter word
 
Why is this happening? The dynamics between the sick
and the society at large are complex. They require extensive
analysis and much soul-searching to be understood. I gratefully
acknowledge the help I've received along the way.
Without it, I would not have survived. Still, I fall well
within the category of the people I describe. This front-row
seat has given me a view from which to share parts of the
puzzle, as I see it.
 
One prevailing attitude in our culture is the unspoken
acceptance of the marginalization of the ill. This societal
blind spot shapes responses when the healthy world interfaces
with the disabled sick. The disabled life is somehow
spontaneously devalued. For those who also lack life's
material basics—projecting an image even more foreign to
the public at large—this attitude is compounded.
 
Even terminology contributes to the problem. A victim
is defined as someone who has been injured by an external
cause. Certainly that applies to people disabled by CFS. Yet
the word victim has become a derogatory term. In popular
culture, its meaning has been altered to refer to someone
 
At the base of the volcano
For some people with CFS, housing is
 
People in this situation grapple for words to
relay their experience. They resort to analogies unstable. Their precious energy is con-
describing their lives as a sinking ship, a toppling
 
sumed by repeated relocations.
 
house of cards, a sandcastle being demolished
 
by the incoming tide. They refer to their ability
to cope as barely held together with scotch tape.
They are so marginalized that some live as recluses. They
feel so displaced that some call themselves refugees. The
conditions of life are so precarious that one woman
described it like "living at the base of an active volcano."
 
So who are these CFS sufferers living in dire straits?
They are "anybody USA." From a variety of cultural,
regional, spiritual, educational and economic backgrounds,
they are former artists, cooks, med students, janitors,
nurses, scientists, corporate employees, veterans and so on.
They are shocked by their circumstances. They're convinced
that their symptoms are made worse by the duress of
their experiences. They've sought, like others, to improve
their lot. Some of them make progress, and the rest con-
 
who is not willing to extricate himself from painful experiences
or who refuses to take responsibility for his own life.
It's as if our empowered culture thinks it has outgrown the
possibility that there can be victims in need of help. Despite
its spelling, victim has become a four-letter word.
 
People with CFS who cannot rebuild their lives are
often told that we need to be more resourceful, more self-
reliant and more courageous. We're admonished to cope
differently, to seek psychiatric counsel and to look at the
brighter side of things. We are handed society's credo:
"choice determines destiny." The fact that illness is limiting
our choices is overlooked, and we're often regarded as the
cause of our predicament.
 
THE CFIDS CHRONICLE FALL 2006
 

HUMAN INTEREST FEATURE
 
Holding the disabled (of any variety) responsible for
their predicament permits the able-bodied among us to walk
away. And walk away they often do.
 
A longtime friend who has become homeless tells me
he can't believe that he's received no help from those he's
told about his disabling case of CFS. He repeatedly says,
"They don't get it, and I guess they don't want to get it
because then they'd have to leave their comfort zone." To
him (and many of us), the healthy world doesn't seem to
want to be disturbed. It doesn't want to be inconvenienced.
It doesn't want to change. And other people with CFS, who
are more likely to understand our plight, are often using the
bulk of their energy holding their own lives together.
 
Help for those who need it
 
A prevalent American belief is that there's help for anyone
who needs it. Along with this belief comes the apparent
assumption that the obligation to help belongs to someone
else. Service agencies assume that church, family and
friends will help; families assume that friends and social
services will help. Around and around it goes.
 
It's true that some people are already overwhelmed.
They're scrambling to pay the bills and get the kids to school
and, for a gamut of reasons, cannot add to their responsibilities.
Yet I've encountered people capable of extending a
hand who make conscious decisions to change nothing in
the trajectory of their lives. No space is made to embrace
the life of a disabled friend or neighbor if it means shaking
up the status quo (which it often does).
 
The inclination to remain undisturbed is so pervasive
that even well-intentioned people can sometimes get
ensnared by it.
 
Kind people refuse to learn the facts of our
disabling symptoms. Moral people don't
inquire about what we need. Ethical people
 
overlook our cries for help. Even people
who claim to love us often keep a distance
rather than feel grief. The comfort zone is
so inviting that even good people sometimes
stand together behind its protective
walls as if there's nothing they can
do to help.
 
In short, people of otherwise
good character aren't immune to
the unquestioned beliefs and
excuses held by the society that
molds them. As a result, some of us who
 
are disabled by CFS have been left largely in the
fringes to fend for ourselves when we cannot.
 
THE CFIDS CHRONICLE FALL 2006
 

HUMAN INTEREST FEATURE
 
The comfort zone is so inviting that even good
do to help.
I can't bear the touch of a blanket on
my legs. My arms are too heavy to lift
and my hands too weak to stroke my
dog. The headaches, the nausea, the
pain. I've been battling this illness for
8 long years. It feels more like 80.
—Essex, Vermont
Yes, there are compassionate people who show concern
enough to help. But others offer "random acts of
kindness" and no more. The rare ones stand by consistently.
And since consistency (of food, shelter, income,
etc.) is in short supply for those of us in dire straits, that
ongoing understanding and support alone can be an
essential ingredient for survival.
 
I live in a small town. Still, I've met many people
with CFS surviving in extremely rough circumstances.
So I conclude that there are likely people with CFS living
in dire straits everywhere, in significant numbers.
 
I ha v e gone fr om prince to pauper .
Ev erything I w o rk ed f or is no wgone.
—Eugene, O r e gon
people sometimes stand behind its protective
walls as if there's nothing they can
 
If society, one person at a time, would confront the
 
marginalization of its sick and disabled members, surely
 
insight would shed light on the mistakes that leave some
 
of us unseen and unattended. Then these valiant, weeping
 
lives could be acknowledged, represented, embraced,
 
valued and assisted.
 
We would appreciate that. .||
 

Gina Kerner lives in Arizona. She has suffered with
severe CFS for years, sometimes barely able to keep a
roof over her head. During this time she's taken a
strong interest in the people with CFS who are similarly
struggling to keep things together.
 
Research indicates that the symptoms of CFS can be as debilitating as multiple sclerosis or congestive heart
failure. Studies also show that the negative financial impact of living with CFS can be substantial. This is a
devastating combination for many people with the illness—particularly those without significant familial or
community support.
The Centers for Disease Control and Prevention (CDC) estimates the annual total value of lost productivity in
the United States due to CFS is $9.1 billion—representing about $20,000 per person with the illness. CDC
research also indicates that approximately a quarter of those with CFS, who would otherwise be employed, can
no longer work due their illness, and those who continue to work lose about a third of their income.
Unfortunately, many people with CFS also report obstacles to receiving Social Security Disability Insurance
(SSDI) and Supplemental Security Income (SSI) benefits, and even fewer receive consistent long-term disability
benefits from private insurers to help close the gap.
For this and other reasons it's important to support the
fight against CFS. Support the CFIDS Association's
research, education, and advocacy initiatives by visiting
http://www.cfids.org/ecommerce/donations.asp
THE CFIDS CHRONICLE FALL 2006
 

3 comments:

Audri Good said...

I know this was written a long time ago, but I found it, and I need to respond. I guess I have CFS - I really don't know since I've been unable to go to a doctor that takes me seriously (I don't have private insurance; therefore, I don't have access to quality doctors). I'm only 24 years old & unable to work. I get SSI and medicaid, but SSI pays so little that I have to share a studio apartment with crumbling walls and missing flooring with another person. I cant afford anything else. Public housing where I live isnt even taking applications - there's a 3-year waiting list. Also, none of them take pets... considering that my 2 cats (& my roommate)are often the extent of social life, I honestly think I would kill myself without them. My roommate, friends, and family all "care" but no one really wants to help. No one treats me like I'm as sick or desperate as I am... people act like I'm just a hypochondriac or this is just a minor illness that isn't taking everything from me. I'm really terrified that my roommate will move out one day - I cant afford a car and I physically cant get my groceries or get around using public transit (Where I live, taking the buses 5 miles is 2 hour trip each way with at least 15-20 minutes of standing waiting in the, often 100 degree weather). I'm really feeling desperate lately - my cognitive abilities used to just be diminished based on my fatigue, but the past few months my long-term memory is fading as well. I can watch any movie or tv show I want now... I wont remember it. People I know are telling me stories I told them - I dont even vaguely remember important stories from my past. The sad thing is, people could just make up something & I wouldn't know... I cant maintain close friendships because I'm not around people very much - I haven't been able to find ANYONE who wants to spend the little bit of energy it takes to reach out to me even tho I cant go out very much, don't run into them in public (like at work), and have little money. I honestly don't know what to do any more. If I had decent housing, transportation, a social life, and quality MEDICAL CARE... at this point I would accept being sick forever... I just don't know how to live like this anymore. I don't know how to keep going - knowing that I'm losing my memories, being so sick, and so alone in carrying it.... The world is not what I believed it was when I was well. People don't really care; not when it comes to DOING SOMETHING. Suffering doesn't really matter... only to the one suffering. Ideals are stories we tell ourselves to make us the heroes. People like me are left to try to learn how to be happy in misery - or kill ourselves. I haven't given up yet...

CFS Facts said...

Sad story, Audri, but a common one. The goverment told me I was the responsibility of my friends/family, and my friends/family told me I was the government's responsibility.

The waiting list here for subsidized housing is 10 years ... about once a year they open up applications for 2 days, and even then, people are added to the list by lottery, not all applicants will get on the list.

It took 11 years to get my SSDI because the first two judges I was assigned thought I looked healthy enough to work and disregarded the medical reports -- even SSDI's OWN doctor was disparaged as incompetent for saying I had limitations!

Finally got a judge who had been a Disability lawyer first, who'd had clients with CFS, who therefore understood "but you look so good" doesn't mean a thing in terms of being able to maintain employment.

CFS Facts said...

Most of my social life is online these days, for the same reason, that no one locally is willing to be friends with someone they're afraid will ask them to run errands or do chores. Even when I CAN get out to meet potential new friends, my obvious disability makes them run the other way.

Besides, fellow patients don't make accusations about you being lazy, crazy, or any of the other things I've been accused of by people who don't understand that CFS is a neurological disease, not a character flaw or psych illness. It's just safer in CFS groups.