Journal of IiME Volume 3 Issue 1 www.investinme.org Forget M.E. Not (continued) people don't really want to know; it's a form of etiquette, and usually a customary "Okay" or "Not too bad" fits the bill. "Not too good", on the other hand, or (heaven forbid) "Quite unwell" is met with a look that says, "Whaddaya mean?!" I have breached the unwritten code of greeting...awkward silence ensues. Admittedly, many don't even listen to the reply: "How are you?" "Not feeling at all well." "That's great, did you see the movie on Channel Nine last night?" A big problem is that aside from pallor I generally look healthy enough...a problem, because one loses credibility when one doesn't conform to the 'sick stereotype'—supposedly thin, frail and slow moving—and are predisposed to comments like "How can YOU be sick, you don't look at all sick?" thinking negative certainly doesn't help, but remarks such as "Chin up", "Look on the bright side", "There are many people worse off than you" only serve to alienate. Surely for a person to be cheerful all the time given the pain level, lifestyle restrictions etc would be a cause for concern. Should these treatments fail it is invariably because you didn't have the right attitude, because "Mrs Jones tried it and hasn't looked back", a mentality accurately summed up as 'wellness macho'. We present a challenge to doctors...if they know us well they believe we are ill but are at a loss as to how to help...most patients aren't so lucky and are labelled neurotic, school phobic, anorexic, menopausal, hypochondriacal, and are handed a referral to see friendly Mr — to have a little chat about why we need to be sick. This is extremely damaging. However even the most understanding doctor becomes frustrated when tests repeatedly come back 'normal'. They cannot give us a pill to make it (and us) go away, and worsening health drives us back With a disease lacking a diagnostic test everyone's an expert...everybody knows someone's niece or cousin twice removed who went to see Dr So-and-so and now she's climbing mountains. Each new regime might be 'the One' to set things moving in the right direction. They stretch from the sublime to the ridiculous but you must try them all lest "don't you ever want to recover?" These treatments aren't always benign, leaving you worse off than when you started, not to mention emotionally and financially. Seven years down the track there's nothing I haven't tried: Chinese herbs, positive thinking, acupuncture, positive thinking, dietary manipulation, positive thinking, aromatherapy, positive thinking, electromagnetic therapy, all the while thinking positive because, "With a positive attitude you're almost there." Well, Invest in ME (Charity Nr. 1114035) again and again in desperation to ask, "Doctor, can't you do something??" Rarely will they say, "I don't know what is wrong with you", which they see as incompetence, when in fact the patient already realises this, and is far preferable to yet another blame-the-patient technique. For pain, other than strong medication, distraction therapy wards off insanity in desperate moments, be it gentle massage, an engaging comedy, company, laughter...distraction as a form of pain relief has been known from centuries such as this quite probably effective (if outmoded) example found in the Oxford Concise Medical Dictionary: "A seton is a skein of cotton or the like passed below skin and left with ends protruding to maintain an artificial issue as a counter irritant." Page 12/76
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