Changing the rhetoric

Since the release of the exceptional docu-film Unrest by Jen Brea it feels like there has been a sea-change in the way the world views M.E.  It’s been a very, very long time coming and I’m trying to be optimistic and excited about our future but if I’m honest I’m still worried.  Worried that we, the patients, are staying buried in our past and not allowing ourselves to move on from the pain and anger of our disease’s history, understandable and justifiable as it may be (trust me when I say that there’s no-one more angry than me at being told I might die from a disease deemed to be “all in my head” and then left to live alone with it for the next 25 years without treatment, health or social care).

Every single article, interview or news piece done on M.E. says something like “M.E. which used to be called Yuppie Flu” or “M.E., which some doctors don’t believe exists” or “M.E. which some people think is just laziness” and it’s driving me insane, as well as killing the momentum we’ve spent 50 years building.

Yes, a proportion of young, upwardly mobile professionals developed M.E. in the late 1980s and because they were intelligent, confident, articulate adults and spoke out in the media  their voice became synonymous with the disease, but let’s remember there were tens of thousands of poor people getting M.E. too who the media ignored and when Thatcherism faded in the 1990s Bollinger, shoulder pads and the Yuppies faded alongside her.  Enough with the quarter-of-a-century-old Yuppie Flu references which were completely eroneous to start with.  The next time anyone in the M.E. world is asked to do an interview  they should only agree so long as that skewed rubbish is never mentioned.

The same principle applies to depression, laziness or anything to do with psychology.  The World Health Organization classifies M.E. as a neurological disease and that is the end of that.  Every time a journalist, interviewer or article makes mention of depression or disbelief it only serves to re-enforce both concepts.  You can almost hear the reader or viewer thinking there’s no smoke without fire, so let’s put the damned fire out.  Let’s only agree to do interviews with the promise beforehand that no mention is made of depression, psychology, “tiredness” or laziness because we all know that these issues have nothing whatsoever to do with our illness.   Even if having M.E. has made you depressed (and why wouldn’t it, I know it has me at times) let’s not mention it, because the second we do it becomes the hook on which our disease is hung.

We need to move forward now.  We need to stop yakking about Yuppies and disbelieving Doctors and instead change the rhetoric.  Re-enforce the fact that M.E. has nothing to do with being “tired” and everything to do with being ill.  Make mention of the brilliant global research which is finding all sorts of abnormalities.  Stop the emphasis on chronic fatigue and put it back on Post Exertional Malaise where it belongs, and tell the world the reality of living with this devastating, life altering disease – the vomiting, seizures, crawling up the stairs on all fours, lying in darkened rooms, fiery pain, dementia-like brain fog and catastrophic malfunctioning of every organ the body possesses to the point where you actually fear you’re going to die.

Let’s all refuse to re-enforce the lies and instead speak only our truth.

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