The Challenges of Living with Invisible Pain or Illness
Caregivers and those they care for often live in an invisible world.
Published on September 28, 2011 by Toni Bernhard, J.D. in Turning
Straw Into Gold
In May of 2001, I got sick with what the doctors thought was an acute
viral infection. But I didn't recover. As the months went by and I
didn't get better, I felt as if I'd entered a parallel universe that I
didn't know existed. One reason this universe is largely invisible is
that many people living with chronic pain or illness don't look any
different from those around them. We simply don't look sick or in
pain.
I should qualify that. The people who are with us all the time know
that we are suffering. They see those subtle differences in our
demeanor when our symptoms intensify. These are our caregivers (called
"carers" in many countries) and they inhabit this parallel world with
us. At the end of this piece, I'll talk about the unique challenges
they face.
I was surprised to learn how many medical problems are invisible to
others, even illnesses that are life-threatening, such as cancer and
heart disease. I'm sure that most television viewers who saw Venus
Williams=97recently diagnosed with Sj=F6gren's Syndrome=97watching from the
stands as her sister played in the U.S. Open tennis final, thought,
"But she doesn't look sick."
What are some of the experiences we share in this invisible universe?
Guilt, embarrassment, and isolation. We often feel it's our fault that
we got sick or that our bodies broke down in some way=97as if it's a
personal failing on our part. We live in a culture that worships at
the altar of wellness. We're bombarded by ads that tell us we can be
healthy all the time. Yes, it's okay to get sick or be in acute pain
due to an injury or a surgical procedure, but then we're supposed to
get better. Everyone expected that of me and I expected that of
myself. For years, I felt embarrassed that I wasn't living up to the
cultural norm.
This expectation of perfect health is especially hard on young people
who face pressure from family and friends to "hit the gym" and "stay
in shape." I didn't realize how many young people struggle with
chronic pain and illness. I was already a grandmother when I got sick,
so, if I felt embarrassed, imagine how they feel.
Many of us believe that we've let our family and friends down. In the
early years of the illness, I used to sob to my husband, "I've ruined
your life." I count myself fortunate to have had his shoulder to cry
on because many spouses and partners don't stick around, leaving those
who are sick or in pain on their own, sometimes to raise young
children. The isolation can be devastating, as can the guilt over not
being as active a parent as one had dreamed of. Even those of us who
aren't left alone have to adjust to a life of relative social
isolation as most of our friends slowly drift away.
Frustration at the lack of understanding. You simply cannot make
intense chronic pain or illness-related debilitating fatigue go away
by exercising, although I've read many accounts of doctors who have
prescribed just this as a treatment. This lack of understanding from
the medical community can have serious, even deadly, consequences
because people become gun-shy about seeing a doctor should a new
symptom appear=97a symptom that could turn out to be a sign of a
life-threatening, unrelated medical problem.
We're often treated as malingerers by family members, friends, the
medical profession, and the general public. After I was interviewed on
a local National Public Radio show, I got an email from a listener
telling me that he didn't want his tax dollars going to support "an
amotivational slacker." Nice little phrase, that. If you figure out
what it means, please let me know. All I know is that when I read it,
it stung.
People with chronic pain conditions are sometimes labeled as "drug
seekers" in emergency rooms and, as a result, are denied much-needed
pain relief medication. Several people have told me that, unless their
personal doctor is available to vouch for them, they won't go to the
ER, no matter how unbearable their pain becomes.
The dilemma of how to "present" to the world. Should we spruce
ourselves up and risk people erroneously thinking we can participate
fully in whatever they're doing? This is particularly a dilemma during
the holidays and at family gatherings. People suffering from chronic
pain or illness will take great care to look their best for everyone,
only to be criticized for not pitching in more with the cooking and
clean-up. The alternative is to stay in our sweats which can lead to
feelings of guilt that we're letting ourselves go and not doing enough
to lift our spirits.
We're often misjudged by others if they see us looking nice or being
active in any way. Healthy people tend to assume it's all or nothing:
we're either sick or we're not; we're either in pain or we're not. And
so, if they see us doing anything "normal," they assume we're 100%
well. This has happened to me many times. Someone will see me at an
espresso place with a friend and assume I've recovered, unaware that I
came from the bed and will collapse on it after the visit. People
aren't deliberately being insensitive. They just don't know.
More tragic, I know people who've had their long-term disability
payments revoked because an investigator sent to spy on them saw them
being active in some way. In one instance, the investigator saw the
person doing some gardening in her front yard. Wow. Limited as I am, I
sometimes pull weeds; I can't ask my husband to do everything!
Caregivers. Caregivers face their own set of stressors. They must live
with the frustration of not being able to make their loved ones
better. They're suddenly thrown into the role of patient advocate in
the medical system, a role for which they have no training or
expertise. They often have to take over the running of the household.
Caregivers see us at our worst, as we put on a good show for others
(for me, this means running on adrenaline), only to collapse when
we're in the privacy of our own homes or apartments.
Caregivers of a spouse or partner also have to adjust to the isolation
that results from losing their companion out in the world. This has
been very hard on my husband. For the most part, when he goes out, he
goes alone. When he travels to visit old friends, he travels alone.
It's very hard. I can tell.
Many caregivers, particularly men, suffer in silence, not sharing with
co-workers or friends the burdens they bear and how difficult their
life has become. It's not surprising that so many of these "invisible
caregivers" are clinically depressed.
These are some of the challenges that those of us with chronic medical
conditions and those who care for us face. It's as if a second,
parallel life has been superimposed on the one we're already living.
No wonder we feel that this second life is a full-time job in itself=97a
job we didn't train for and which we are often ill-equipped to
perform. It took me many years to find a measure of peace and joy in
this hand I've been dealt.
My heartfelt wish is that you find your measure of peace and joy too.
=A9 2011 Toni Bernhard
http://www.psychologytoday.com/blog/turning-straw-gold/201109/the-challenge=
s-living-invisible-pain-or-illness
---------------------------------------------
Send posts to CO-CURE@listserv.nodak.edu
Unsubscribe at http://www.co-cure.org/unsub.htm
Select list topic options at http://www.co-cure.org/topics.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
