And so we should be.
I wonder though,
if sometimes it's not more a problem of expectation and miscommunication
than disinterest….?
Making a diagnosis of an auto-immune disease takes a long time. Many blood
tests need to repeatedly show a specific pattern of events. This takes
time, as well as timing, plus the appropriate test to evidence the helpful
results that point to an illness of this nature.
As patients, we have to go back to the G.P. and specialist, and chart
symptoms. Many of our symptoms can seem unrelated and bizarre, even hard
to believe. Some resemble those that might have occurred through non-physiological
root causes. We, the patients, are therefore at a distinct disadvantage
in having to go through this process. We are often in a distressed state
ourselves, frightened by what's happening to us and worried by what might
be causing it. If we are sick over a prolonged time, we may have suffered
financial loss, relationship breakdowns and other problems that complicate
and exacerbate things. A lot of us have experienced doctors who either
don't believe our symptoms or minimise them. Some practitioners become
aggressive, accusing us of malingering, not being active, wasting their
time, or whatever.
But try to imagine being the doctor. They are always on the "helper" side of the desk. We seek them out, expecting them to "fix" us. They ought to be able to help, but sometimes they can't work out what's going on. Despite their long years of study, they just may not know the answer. So some of them may resort to psychology, some may refer you on to another doctor, and others might tell you "it's nothing much, probably viral". Without a clear indicator, they may not realise that you are displaying an unusual disease. Some of us exhibit so many symptoms, it is confusing. Doctors can feel inadequate. They may even write a prescription, just to be "seen" to be doing something.
We might respond with bewilderment, embarrassment, hurt and anger. Sometimes we begin to doubt ourselves and our symptoms. Sometimes we get so desperate; we'll try anything, even "way out" remedies! Sometimes it is appropriate to change doctors. A fresh approach is called for, especially if trust is lost.
So… WHO IS TO BLAME??
We all are.
Doctors are people too. They have things happen in their lives which affect
them. Our expectations can be mighty high.
Let's work at education - for ourselves and the medical profession.
Learn about your disease(s). Step back and review what's happened so far.
Hone your communication skills. Try to de-emotionalise your delivery,
so that you communicate accurately and clearly to doctors and other medical
groups. Keep written records - patterns of symptoms are substantiated
best when diarised over time.
Offer to be a "patient" for medical students to interview. Talk
to nurses and doctors about your condition, if you are hospitalised. Learn
about your rights as a patient. Take responsibility for your condition,
learn about managing it. Be an advocate for yourself. Ask questions. Talk
to others. Persist in your quest for answers. Be realistic. Write letters
to the appropriate authorities if you have experienced poor treatment.
DON'T JUST GET ANGRY - DO SOMETHING POSITIVE ABOUT IT!!
Robyn Atwood
