By Carol Sveilich,
ever said to you, "You look great!" while inside you
felt fatigued or were in profound pain? People who live with ongoing
pain and chronic health challenges face such dilemmas every day.
Since many ongoing symptoms often do not manifest outwardly, people
sometimes have a difficult time believing that a person with a
healthy appearance and lively demeanor can be experiencing so
many profound symptoms and limitations.
acquaintances and family members who say, "but, you look
fine," can often unleash a sense of anger or compound the
feelings of isolation in the person who lives with physical challenges
that are hidden from view. It would be nicer to hear, "I
cannot imagine the difficulties you are experiencing. You are
incredible!" or "I didn't know you were dealing with
such challenges. Tell me more about it. How can I help?"
or "You certainly make it look easy, but it must not be easy
at all." Acknowledging the condition, rather than belittling
or dismissing it, is always welcomed.
no instruction book exists to guide people living with such ongoing
challenges. People with chronic symptoms must sometimes learn
to adapt to new routines or limitations. There was a time in their
lives when they would promptly recover a bout of feeling ill.
But now they find themselves riding a wave of symptoms that wax
and wane and never quite go away. This is a tricky ride to maneuver,
especially for someone who is accustomed to experiencing decent
health and a prompt recovery.
the most challenging aspect of living with ongoing pain is not
having control over whether or not they will have a nice day.
It is sometimes impossible to make plans, commit to vacations,
or even take a trip to see a movie. This lack of control over
symptoms can leave a person feeling as though they live within
the body of an unpredictable stranger. Not surprisingly, Nazi
concentration camp survivor and psychiatrist, Viktor E. Frankl,
compared his loss of control in prison to that of a person imprisoned
in a body with chronic illness. His inspiring attempt to control
attitude, if not circumstances, is one that can easily apply to
the growing population who live with chronic pain.
do not give in to their pain or illness. When faced with strenuous
situations, they tend to push themselves beyond their comfort
level. As a result, they pay a high price for overexertion, which
often aggravates the condition or illness. Symptoms may worsen
for days or even weeks. Sometimes having a good day is simply
having a day that is realistically paced. Honoring limitations
is one of the most difficult challenges for those whose lives
are invaded by pain. They tend to move beyond their comfort levels
into a more psychologically comfortable space so that they appear
normal and perfectly capable. Over time, they must learn the fine
art of managing their condition and learning to say no to many
of the activities and chores most people take for granted.
who live with chronic conditions and the associated limitations
grow tired of being tired. They sometimes decide to challenge
their limitations or else let limitations be overridden by the
sheer force of their willpower. Some people have the mental determination
but lack the corresponding physical stamina. It's as if the mind
and physical body vibrate at different frequencies and race or
rest at entirely different levels. In your mind, you might have
all of these ideas or projects that you'd like to accomplish,
articles you'd like to write, jobs you'd still like to hold. You
are still an energetic person even though your body may not be
energetic. It's difficult to merge the desire to do, with a body
that is unable to accomplish what the mind wants to direct.
must always remember to get past the guilt that is sometimes associated
with taking frequent rest periods during the day. The person who
lives with chronic symptoms must constantly play the trade-off
game. What can I cut today? What has to be done, and what can
be shelved for awhile? How can I save my energy? How can I reshuffle
the responsibilities before me so that I can maintain my stamina?
If they don't alter their lives in significant ways by juggling,
pacing, and simplifying activities, symptoms can become even more
difficult to manage and adjust to.
it. Human nature, for the most part, is visually oriented. We
believe what we see and often make character judgments based solely
on visual perceptions. Society is simply not attuned to the needs
of these people with easily concealed disorders such as chronic
pain. While many feel compelled to help someone with an obvious
physical challenge, they may respond negatively when asked to
help or provide special accommodations to someone who appears
healthy and looks just fine.
happens when the person who appears healthy, energetic, and just
fine to family, friends, and coworkers, is quietly suffering with
chronic pain. Often, they simply learn to play the part of being
pain-free. "Sometimes I think I should just go into acting!"
Shawna laughs. She lives with the painful symptoms of endometriosis
and already feels like a seasoned actress. "I should win
an Oscar for some of the roles I've had to play in trying to hide
my pain and symptoms from others."
brought up to do everything for herself. Independent by nature,
she certainly does not like to admit that she needs help. "I'm
sure I give the impression that I don't have a problem with pain,
and that confuses people. On the one hand, I'm saying 'I hurt
and am tired,' but if they look at me, they don't see the pain
discouraging and demoralizing to be in pain every single day,"
says Peggy, who lives with the chronic symptoms of fibromyalgia,
a condition characterized by widespread musculoskeletal pain.
It is one of many heterogeneous illnesses; meaning that each person
may experience the same disorder in a variety of ways. "Sometimes
I become overwhelmed with the pain. It wears me down and takes
a lot of explaining because most people cannot relate to being
in pain all of the time."
Chronic pain is real. Yet it is sometimes difficult to talk to
friends and family members about it. Not only do people want to
be free of chronic pain, they do not want to feel like a burden.
"It's a large part of who I am. I just don't want to be pitied
by my friends or be known as 'the suffering one' to those I love
or the people I work with," says Donna. "Everyone becomes
tired of hearing about how much I hurt, including myself! Some
people think I am making it up or exaggerating my symptoms. But
chronic pain is my reality. Even the medical community doesn't
always take my pain seriously."
seems to be at the vortex of incompatible agendas among government
watchdogs, insurance companies, doctors, and patients. Fear of
addiction is the key issue. Concerned that the patient will become
addicted, doctors are sometimes hesitant to prescribe painkillers.
However, individuals with chronic pain, or those who require significant
pain management, rely on analgesics just as a diabetic depends
on insulin. Erica, a mother of three, counts herself fortunate.
"I now have a good doctor who does not shy away from the
issue of pain management. He prescribes the appropriate medication
when needed and necessary. I go about my life, but when the disease
acts up, I'm not afraid to medicate and then move on."
who live with painful conditions feel the need to be stoical about
their plight. They see their pain as a sign of weakness, or feel
their character is being disparaged because of their suffering,
and thus refuse to manage their symptoms with effective treatments.
They deprive themselves of the relief that may allow them to regain
a better quality of life.
Jill is just
beginning to learn the intricate rules of the pacing-game. It
is terribly tempting for her to try to play catch-up when she
happens to have a good hour or day. "Sometimes I start to
feel better, get excited, and feel that I should take advantage
of feeling better. So I begin to get things done and end up doing
too much. I've only just learned that instead of trying to get
a lot done while feeling well, I need to temper that phase so
that I don't 'crash.' This is so obvious and yet so hard to do,
because it is exciting to feel good."
of pain and exhaustion is a daily concern. Fatigue is a part of
many chronic conditions, and making a place for this unrelenting
weariness becomes a way of life. After awhile, it becomes impossible
to remember what it is like not to feel exhausted. It is important
to recognize that you may be able to perform some of your previous
activities, but less frequently or for a shorter duration of time.
People with chronic disorders can learn to work with their bodies
and to recognize their limitations, but it often takes a bit of
time and some trial and error.
People who live with concealed disorders talk in terms of good
days and bad days. Performing one major task per day helps many
people to manage their world, even if only in small bites. Deciding
what is a priority and what can wait becomes a new and crucial
skill. Pacing and juggling tasks and pleasurable activities become
skills that optimize chances for a manageable life.
have to find a new way of playing and having fun together when
one member of the family becomes chronically ill. Old hobbies
and recreational trips may make way for new and creative replacements.
Playing board games rather than camping, for instance, can keep
families connected and involved in each others' lives.
is a crucial survival skill to develop. This is often difficult
especially if you link self-worth to tasks completed. For instance,
if you live with chronic back pain or fibromyalgia, you may have
difficulty asking the grocery store-bagger to assist them to the
car. Accustomed to being self-sufficient, many with pain may equate
help with weakness and the loss of dignity. They desperately want
to remain self-sufficient and resist surrendering to fatigue and
pain. Others, however, may regard such a request as a way to reserve
and restore some energy and preclude the most persistent pain.
It's important to keep at the forefront of your mind that learning
to accept help can actually be a favor to others. Accepting help
from friends and family may be easier if you look at it in this
way: You are helping them to cope.
is chronic pain really like to live with? If you have not experienced
it, it is difficult to describe such a steadfast companion. Albert
Schweitzer once said, "Pain is a more terrible lord of mankind
than even death itself." Many who have lived with chronic
pain would echo those sentiments. However, is crucial to remember
that, in the end, nothing can compromise your spirit. You are
not your pain. You are not your illness. Look at your physical
state of health as the movement of the ocean. There will be mighty
waves at times, but in other hours or future days, the tide will
also recede, and there will be calm periods where you will find
relief. The good news is that we have the capacity to make some
issues foreground and some issues background in our lives. This
is a choice that we can make all day long throughout our lives.
What part of your illness can you put in the background, if only
for a short while? Have a visit with someone you love. For that
moment, you can welcome your joy to the foreground, even if only
slightly. Keep inviting those inspiring, meaningful moments into
your life. Most of the time, life is all about small and precious
is not necessarily to become well, but to learn to accept what
life has handed us. It may not always be a welcome gift-this one
of chronic symptoms and unpredictable days-but rather an opportunity
to learn more about our inner strength and the importance of the
people in our lives. It is also a chance to use the gifts within
that would have otherwise sat dormant. Sometimes, learning to
be compassionate with ourselves is a far more difficult assignment
than caring for others. Fortuitously, chronic physical pain or
symptoms often force us to care for and about ourselves in new
and profound ways.
feel hopeful again is a vital stage towards acceptance of our
condition and making peace with the pain. Today, there are more
beneficial treatments and resources for chronic pain than ever
before. Support groups for specific conditions meet regularly,
both in person and online. Camaraderie and information are only
a mouse click or telephone call away. Numerous organizations for
particular illnesses and conditions, such as the National Pain
Foundation provide educational information to those with health
challenges and to their family members. There is also a vast amount
of research underway. Medical scientists and alternative healthcare
professionals are learning to recognize, control, and in some
cases prevent, a host of chronic disorders. There are many reasons
to feel hopeful if you shift your focus and maintain awareness
that the future holds possibilities that cannot even be imagined
No one chooses
to have a chronic illness or experience unyielding pain. When
struck with a disability, people usually feel compelled to return
to their former selves and rejoin previous routines. Almost primordial
in nature, we intuitively ache for a bygone era when life was
predictable and comfortable. To accept a new and limited way of
functioning is not very appealing. Why should a person want to
live happily in a body that is out of order? There are many who
fight an illness or condition that seems resistant to interventions.
Some become gifted at taking flight. They ignore and run from
a chaotic set of symptoms that has shattered their habitual schedule.
Despite the frustrations and various stages of grief, most people
eventually move on and coexist in relative peace with their disorder.
They learn to dance with the pain using new steps and discover
what they can now do rather than what they used to do. Having
lost the ability to kick up their heels, they learn to tap their
toes to a new tune, perhaps a bit closer to the ground.
Sveilich, M.A., is a group facilitator and counselor in San
Diego, California. Her background includes conducting support
groups for those with health challenges, serving as an academic
counselor, and developing newsletters, columns and articles to
assist and educate others with chronic health disorders. Called
by many a "support group in a book" and endorsed by
medical and mental health professionals, as well as by actor,
ED ASNER, former Miss America, MARY ANN MOBLEY, and San Diego
Chargers, ROLF BENIRSChkE, Sveilich's new book Just Fine: Unmasking
Concealed Chronic Illness and Pain is now available directly
from the author or may be ordered through bookstores everywhere.
FREE COPING TIPS may also be requested from the author via email: