Several people I know are seeking a cure for a chronic
disease to the point that they’ve stopped living. All they can talk about is
the latest research, diets they’re trying, doctors who aren’t helpful (that being
most of them), homeopathy treatments, vitamin regiments etc. They are spending
enormous amounts of money, often going into debt, to try things that may be
helpful but more often than not have no proven value. They exude a level of
desperation that is difficult to be around, with the upshot being their quality
of life, and also that of their families, is being adversely impacted.
Some will point to the film “Lorenzo’s Oil” as proof
that this dogged determinism can pay off. Based on the true story
of how parents of a boy with adrenoleukodystrophy (ALD) found a treatment for
this disabling and fatal disease, what many were unaware of is that before the film was even released they already knew it wasn't a cure. It turns out that the oil (oleic acid and erucic acid)
doesn’t reverse the disease in boys that already show symptoms but does appear
to prevent it in some of the boys with the genetic marker for ALD. In fact,
from the time he was 8 until he died at 22, Lorenzo was paralyzed, blind,
unable to speak, was dependent on a feeding tube and kept alive by round the clock
care. His father conceded that he had sometimes wondered if that was enough of
a life to justify the extraordinary lengths to which he and his wife had gone.
If you find that you are spending every waking minute of your day obsessed with a cure or
effective treatment consider the following:
• Give your brain and body a break by doing Mindfulness Based Stress Reduction (MBSR). When the
body and brain are chronically stressed (e.g. obsessing about health) the
hormone cortisol increases and interferes with learning and memory, lowers
immune function and a host of other things. Research shows that MBSR lowers cortisol levels and has been effective for a number of chronic conditions, including irritable bowel
and other gastrointestinal diseases, chronic pain, PTSD, hypertension, heart
disease, anxiety etc. If there isn’t a course being offered near you, try it
on-line for free at Online Mindfulness-Based Stress Reduction.
• “Take a break” (meditate, light yoga, tai chi, qigong, laugh, dance, art, make
love, pray, socialize) every day to help reduce cortisol. Do something that has
nothing to do with your chronic condition. If you need ideas, check out over
200 ways of doing this at the Take a Break Pinterest Board.
• Share your feelings. Family and friends may not
be appropriate for all situations, so find a counselor who can help you
• Participate in a condition
specific support group, either in person or online, so while you are working on
better ways to deal with your condition, you also are having social
interactions.
• Become an e
patient, by enrolling in one of the on-line communities that are sharing data
for your particular condition. Check out Being an E-Patient
• Find a
medical provider that is willing to help you explore options but can help you
control spiraling into obsession.
• Before you try
another “new idea” read, “I’ve Got Nothing to Lose by Trying.”
Bottom line-Do what
you can, when you can, for as long as you can but never until it hurts you
or loved ones.
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