by Brian Grady, Ph.D.
It's common.
It's common not to have a clear diagnosis. Surveys in Sweden and
England have both shown that at
any one time, about 15% of the
population has widespread pain with no clear diagnosis. Many times a
physician does
not know the cause or exact nature of the problem, but
does know that nature will heal most problems with good general
care,
sometimes called "non-specific treatment".
General or "other" diagnostic categories exist because there are
often conditions that don't fit a diagnostic category. In psychiatry,
for example, one can have a diagnosis of "Mood
disturbance not
otherwise specified". In other words, there is no fit to a standard
diagnosis. These are categories
for conditions that don't fit the
general classification structure. Nature is more complex than our
textbooks.
Why
we want a diagnosis
Ideally, a diagnosis guides treatment. We know what this problem is,
we know how to fix it. With
a diagnosis, therefore, we feel more
confident that we will be cured and that our normal life will soon
resume.
A
diagnosis may also bring with it a predicted course, or prognosis.
From this, we can plan because we know what to expect.
We will not be
taken by surprise by changes in the condition. We may know how to
make life more comfortable while
we are mending, since we will know
how long it will take to get better. We can prepare.
A diagnosis helps us to make
sense of our symptoms. It begins to
explain why some different symptoms go together, for example. This
makes our problem
less mysterious, whether or not there is a cure or
treatment. We find patterns and explanations reassuring. We are prone
to fear what we don't understand, and a diagnosis may be a way reduce
the fear of the unknown.
Diagnosis makes
us feel safer, cared for. Someone understands this.
It is known, and real. Lack of diagnosis on the other hand makes us
feel vulnerable. The medical system is shown to be imperfect. It does
not know something. This puts us in a less secure
position than we
thought. If the medical system is imperfect, I might not get help
when I need it.
Diagnosis makes
us feel not alone. There are others with this
condition too, or else it would not have a name. This makes us feel
less
unique, isolated, and this is reassuring. Who would want to be
the only person on the planet with a bizarre and unknown
condition?
Diagnosis has financial implications. In order to get a disability
claim you need to have a certain kind
of diagnosis. Because human
beings are not 100% honest all the time, there are checks in the
compensation / disability
system. One of these it not to hand out
money to people who say they are sick without evidence of this.
Second, some
conditions are only temporary. One does not want to plan
long term support for someone who will soon be well. Diagnoses
help
make this distinction between temporary and chronic conditions.
There is a social stigma of having an invisible
condition or one that
is not diagnosed. We want a diagnostic label to explain what we have
to others. Especially if
the condition is invisible to others, we can
defend ourselves to those who are suspicious, skeptical, or critical.
We
can also justify our behaviour, explaining that this not not
normal everyday situation. "Yes", they say, "I get a sore
back too
sometimes. Don't be a whiner". A diagnosis of a herniated disk tells
the critic that we are justified in
not lifting that heavy load today.
Lack of diagnosis makes people wonder sometimes "Am I imagining this?
Is it all
in my head? Is this a sign of emotional or mental
weakness?" All of these are based on shame and judgment, and also
misunderstand
how mind and body interface. Interestingly, we are
often more prepared to be physically ill than to have some kind of
shameful mental condition causing symptoms, especially ones that are
invisible to others. That would be a moral weakness
indeed. A
diagnosis is reassuring. There is nothing wrong with me as a person.
I have an illness.
When there is
no physical diagnosis, the phrase "All in your head"
sometimes is dusted off and thrown at the patient. This is not a
diagnosis, nor is it an explanation that makes any psychological or
physiological sense. Some people may say this
assuming that if there
is no gross physical pathology, the condition is therefore not
physical but psychological.
There are several problems with this. It
is illogical, since LACK of evidence is not evidence OF anything. It
ignores
the fact that mind and body are not separate systems but are
integrated. It is unhelpful, since it does not guide treatment
in any
way or lead to recommendations. It is vague, again not guiding
treatment. It is as if a psychologist would
meet someone and say "you
have a physiological problem". So what? As an analysis it does not go
very far.
Expectations
of the medical community have been raised to extremes
with publicity of dramatic surgeries, advances in knowledge, high-
tech
medical procedures, and new drugs always being announced. We
have high expectations and are disappointed with lack of
diagnosis,
and see it as a failure. Patients are not alone in this. Lack of
diagnosis makes medical people very uncomfortable.
Their training
tells them to diagnose in order to do treatment.
How to live with lack of diagnosis?
As I noted
above, there are many reasons why having a diagnosis is
important to us, and a few reasons why it can become too important.
Sometimes, despite everyone's best efforts, though, there just is not
a clear diagnosis. What then? Here are a few
suggestions.
1. Acknowledge that the medical community does not at present have a
solution for you, and seek solutions
in some other form. This may
involve life style changes, getting support from friends or family,
focusing more on
adapting to the condition than on curing it, working
with healers outside the orthodox medical system, or just deciding
to
get on with life as it is.
2. Be clear within yourself that your symptoms are real, even if they
don't have
a name. Don't be bullied by others who in well meaning
words or in judgment invalidate you. Study your symptoms, see what
affects them for good or ill. As you learn about them from
experience, you will learn better how to manage them and
how to
manage your life.
3. Figure out what it is that you are are most afraid of - what are
the fears that a
diagnosis would put to rest? See if these fears can
be allayed in other ways. Maybe you already have some of the
information
you need to answer your questions and decrease your
fears. Also look carefully at the things you are concerned about or
afraid of, and see if the fears are are realistic. Maybe you already
have solutions for some of the problems that
you think you might have
to face.
4. Find ways to get on with your life in as many ways as possible,
and do not
let the uncertainty stop you from making whatever plans
you are able to. Even a clear diagnosis would not confer 100%
certainty what will befall you in future. Be prepared to be flexible
and make changes as you go, but do not let uncertainty
stop you from
living your life.
5. Do whatever you can to make your body feel good, to minimize
symptoms, and to
maintain your body – for example, eating nutritious
food, reducing stress, exercising, getting enough sleep. You
need to
do your part to make the body's condition optimal for healing. Once
you are doing this, let it go, acknowledging
that you are doing all
you can and that the rest is up to nature.
6. It is appropriate to be reassessed from time to
time, to be sure
that nothing new has developed. Discuss this with your physician.
Used with permission
of Dr Grady.
