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.