makes an illness or condition visible or invisible?
Assistive devices, body appearance, and behaviour tell others
you are ill or disabled. Devices include canes, wheelchairs,
walkers, crutches, braces. Most of these are used for mobility.
Body appearance can be things like skin colour, deformities,
and scarring. Behaviour includes limping or other changes in
gait, posture, sounds (like groaning), or facial expressions
of pain or tension.
Chronic pain and many other chronic conditions are rarely visible
to others. 3.4 million Canadians and 26 million Americans (therefore,
on the order of one in ten people) are considered to be disabled
to some significant degree, but most of these people (about
3/4) will not need assistive devices or give other signals that
send the message "I'm sick". Body appearances are
often hidden, and illness behaviour may be suppressed or misunderstood.
Many people with a physical problem look fine to others.
of invisible conditions are arthritis, asthma, brain injury,
chronic fatigue syndrome, chronic pain of most types, Cushing's
syndrome, cystic fibrosis, diabetes, endometriosis, heart disease,
lupus, Lyme disease, Meniere's disease, migraine, multiple sclerosis
in the early stages, neurological and seizure disorders, osteoporosis,
organ transplant, and Parkinsons disease.
Not only the condition, but also the associated problems
may be invisible to others. Side effects of medications taken
for these conditions are not usually known to others. Strangers
will not realize that an activity might have a big impact on
symptoms -- not seen until later. For example, there might be
a crash later after over-doing an activity. The effects of the
condition on family life, sleep, and the mental state of the
patient are usually a private matter. The immediate symptoms
are just the start. Others can easily underestimate what you
are really coping with.
People's understanding of illness is based mostly on acute conditions.
We understand a cold or a broken leg. People are either sick
or healthy. The sick and healthy roles are well understood.
Sick people complain, look ill, and remain inactive while they
recover, which is usually within a few days or weeks. This is
true for acute illnesses or pain. We also have an idea of what
an invalid is. This is a person who needs to lie in bed being
cared for long term. But what about the role of someone with
a chronic condition that is not totally disabling? Someone who
can go for walks, for example, and do some errands, but has
limited capacity. This role is not so well defined in our culture.
there are some traditional cultures, where the person with a
chronic condition (especially if they are mid life or older
and female) is not expected to do anything or really function.
They are put into the 'invalid' category and have trouble being
allowed to do things that would be more functional.
Based on the well-sick-invalid framework, you are allowed to
be sick or limited for a while. After some months, people will
be expecting you to be back to 'normal' - that is, a healthy,
fully productive state. If you are not, but you look ok on the
outside, there may be misunderstandings, rejection. Some people
judge you as lazy, exaggerating, or accuse you of faking to
get insurance benefits or attention. Or they expect too much
of you, overestimating your current ability. Dealing with people's
misunderstanding and judgment, suspicions, and assumptions is
painful. Having to justify your lack of productivity is an extra
stress on top of having the actual condition.
hardest part to deal with, for me, is not being sick; it is
the suspicion and lack of understanding about my disability
from people in my community that is the most disturbing. For
example, if I am feeling up to getting out of the house for
a little while with one of my family members, I am chastised
for being seen out, how I look, and what Im doing. Many
people are of the opinion that if I am well enough to be out,
than I should go to school and function normally. Peoples
ignorance has been, and continues to be, the largest obstacle
that I have had to face."
the well-sick-invalid framework, people expect that if you look
ok, you are ok and can function normally. And if you can function
OK now, you must be OK 18 hours a day. Expectations are based
a problem. With a chronic condition, you can't stay in bed and
live a totally disabled lifestyle until you feel better. If
you did this, you would not function at all. Many conditions
require you to do your best while you feel your worst. You appear
capable when people see you active, even if you are limited
at other times.
If you have a chronic, invisible condition, you have an important
job: to look after yourself as well as possible. This will make
you look better, despite your symptoms. You need to do this,
because there is a cost for letting other people's opinions
keep you from activities that give you health. To be healthy
as possible, you might need go to the gym like healthy people
do. You get up and go out, even though you might be misunderstood.
To restrict yourself leads to lower function and more disability.
Your illness then becomes the focus of your life and takes away
more and more of the quality of the life you have left. That
is the price you pay.
It is sometimes
a dilemma whether to make a point of "showing" your
illness. You want to appear "normal" and to fit in,
not stand out and be noticed. You also want people to recognize
and understand your problems. Some people struggle with this.
Should they use a cane and be noticed as sick, or avoid it and
be misunderstood? How much do you let people know? To a degree,
it's a personal choice. What are the consequences of each option?
What would either choice lead to in the long run?
and the medical community
Many illnesses are invisible to physicians as well. This does
not make your illness less real, but there can be consequences,
especially if there is no diagnosis (see related article 'Living
without a diagnosis'). Many invisible illnesses are not recognized
or are poorly understood by the medical system. Some invisible
illnesses don't get enough treatment, or the right treatment.
Some patients are dismissed by the professional, which is usually
frustrating or humiliating. Some have to go through painful
diagnostic tests and a long series of visits to specialists,
waiting for someone to make the illness visible at last.
do not have good diagnostic tests. In the case of chronic pain
for example, pain can last beyond the usual time of healing
because the pain-creating part of the nervous system has gotten
over-excitable - a phenomenon known as "wind-up".
Nerves involved in pain transmission can fire spontaneously,
respond to harmless stimuli, and fail to turn off as easily
as they should. Chronic pain is believed often to be a disorder
of the central nervous system. It is an alarm system gone wrong.
This is not something that can be easily tested, and so it is
invisible to the observer, though felt to the perceiver
One of the
only ways to make invisible pain visible is through behaviour.
This can create some problems. "Symptom magnification"
is the term medical people use when the pain behaviour shown
is much more that you would expect given the physical findings.
An example: A person won't lift his or her leg in a formal test,
or groans or resists, but does a similar movement freely when
it does not look like a test. Fear may drive this, but it sometimes
is just the desire to make the invisible pain visible. This
usually works against the patient. It reduces their credibility
and makes the invisible pain actually more suspect.
with the invisibility of the condition
If you are dealing with an invisible condition, there are some
things you can do to deal with this.