Writers censorship by insiders still censorship

A page of roses. Text: Artistic integrity is for the writer to decide. The road to hell is paved... Alicia Butcher EhrhardtACTIVISTS TELL ARTISTS TO BE POLITICALLY CORRECT?

I received an email today from someone in my own community which reads:


Please, please, PLEASE change the name from CFS to ME.  I have just watched [X]’s TED talk, and that only reinforces how important it is not to continue using this dreadful name. We must NOT add to the wrongness of all that is wrong or not happening with this disease.

[X] might well be putting ME on the mainstream map. …

Thank you, [NW – name withheld]

And it raised my gorge, for reasons I will now explain.

A little background would set this in context

I started Pride’s Children at the turn of this century, set it a few years later into the time period 2005-2006, and locked it down in my memory to keep the details accurate.

It took me a long time to write, a long time to get it right, and a fair amount of time to publish.

Promotion is not my thing, but I’m womanfully shouldering the task, which used to be a purely indie/self-publishing task, but has now become a task most writers, traditionally- or self-published must undertake (or risk selling no books – traditional publishers only market those books expected to be big sellers or for writers in their top 1-2% – everyone else gets bupkis in promotion).

SINCE publication, a bit over a year now, among other efforts, I have asked a lot of CFS people to read, and possibly make a mention of Pride’s Children on their blogs or sites – and haven’t even had the courtesy of a reply.

I shrug – figure they have more important things to do with their time.

My own Facebook ME/CFS community has been far more supportive, and people there have made a huge effort to read (even when they rarely read books any more, and even more rarely something of PC’s length (167K words for the first volume in a trilogy) and complexity. And several have given me the incredible additional gift of a review – and I know how much it costs me/them.

I’ve asked other people connected to the ME/CFS community to publicize, read, review – again, no interest.

Fiction breaks down walls

I emphasize that fiction is one of the prime ways (cf. Uncle Tom’s Cabin, Black Beauty, To Kill a Mockingbird… in novels; movies such as The Philadelphia Story with Tom Hanks) there is to get through the barriers people put up against involvement around their hearts and minds.

I understand; the world used to have a disease of the week, and now it is more like the disease/charity/cause of the second on the internet, TV, and the mails. ‘Compassion fatigue’ is real.

I think I’ve written well; some readers tell me so.

And you’ve heard endlessly my statement that

the more there is a message in the fiction, the better the entertainment value must be

because people don’t like being preached to. Have an important message? Don’t tell people – let them find out for themselves through your characters.

So why did this email bother me so much that I’m blogging about it?

  1. Historical context: for a disease that has been called yuppie flu, CFIDS (chronic fatigue and immune dysfunction syndrome), SEID (recently – something to do with our post-exercise exhaustion), ME (for myalgic encephalomyelitis or encephalomyopathy), and others that didn’t stick very long, it is disingenuous to decide that ‘ME’ (with the first description- one I don’t understand because I always though myelitis was an inflammation the covering on the outside of nerve fibers (Google: infection or the inflammation of the white matter or gray matter of the spinal cord), and I don’t even remember what ‘myalgic’ means (Google: muscle pain). In any case, ME always has to be explained.
  2. Everyone’s CFS is different, though there is a core of symptoms (like a Chinese menu – so many from Column A, so many from Column B). I was diagnosed with CFS in 1989, and nobody did anything then or since to see whether there’s inflammation somewhere on my spinal cord (nor would I let them – the symptoms are bad enough).
  3. There is no approved designation worldwide – the European ME people say we US people with CFS don’t have the same disease, for example.
  4. There are no approved tests – up until now, and especially in 1989 and 2005, the diagnosis was made BY EXCLUSION of everything else they could think of that gave you the same symptoms. We’re hoping for research that will nail down a cause, and possibly give hope for treatment, at least for those who are more recent victims, or possibly not full of co-morbidities after all these years.
  5. Insurance companies and the CDC and the NIH change their designations all the time, for reasons which they always claim are ‘the best.’ I’ve seen a lot of these in 27 years, and few have stuck, and each one claims to be the one which will put us on the map (and wastes a lot of money on talk, administration, and stationary each time).

Another name change could come along tomorrow – and I hope it will when they figure out the cause – some exotic virus or virus fragment or new quasibiological entity – which will give the whole thing the correct context (cf. HIV). CFS is as good as any of these other designations – and has the advantage of being far better known (and not pronounced ‘me’ as in ‘I have me.’)

But of course the most important part is that I choose what I write

And was careful to make some of the above distinctions (ones which would be known in the time period the book was set in), before using CFS consistently in the rest of Pride’s Children, BECAUSE THAT’S WHAT WE USED BACK THEN.

And I guided the reader in and out of those distinctions with care and deliberateness to emphasize the (at that time and still now) UNKNOWN quality of this illness.

If you own a copy, it’s in Pride’s Children, Chapter 2, where Kary explains it to Dana. If you don’t own a copy, the Look Inside feature on the book’s Amazon page includes that chapter in the sample.

C’mon, wouldn’t it be an easy change, and shouldn’t I play ball?

In addition, the email sender shows a cluelessness about how a book is written, published in ebook and in print that tells me blithely to put in hours, days, weeks to change something – because X gave a TED talk.

Good for X (who belongs to one of the organizations I’ve gotten no response from – an organization within a few miles of me, by their address). This is X’s mission – along with more advocacy that I am very grateful for – and which I cannot do. X has put a life on hold (no choice in the matter because, well, of CFS. ME/CFS. ME.) and chosen to use connections I can’t do anything but drool over. I am happy for X.

And one of X’s project, which may make X famous (15 min.? hope not), had a very catchy and expressive name, which was JUST CHANGED to something entirely different I don’t like!

But I spent FIFTEEN years writing the first third (and outlining the rest) of what I consider a major novel with a CFS main character, before any of this other stuff happened (X has been sick for five years, and was in elementary school when I started this project).

I started serializing the final polished novel in 2012 – when X’s project was not even begun.

And there is no way in hell I’m going to make a change to my published story to accommodate anyone, just because they may end up being (probably will – those connections I mentioned – and a HUGE amount of effort) much more famous than I am.

I guess that covers it:

  • it was inappropriate to ask me to change MY book
  • it couldn’t be done, even if I wanted to, without an enormous effort on my sole part
  • and where were you, NW (name withheld) when I asked – I couldn’t even get you to read
  • I don’t think, personally, that CFS is all that dreadful a name; the name recognition, you see

It isn’t ignorance; the person (NW) who wrote has known me and my book’s existence for FAR longer than those five years I mentioned.

Thanks for listening. It is good to get these things written down – and out of my mind, where they tend to fester.

I will happily listen to opinions civilly offered.


20 thoughts on “Writers censorship by insiders still censorship

  1. marianallen

    Some people just want everybody to be on their page. It isn’t that they don’t care how much trouble it would be, they don’t even think about that. They just want everybody to be on the same page they’re on. It’s as if they take it as an insult if you’re on a different page. “Oh, you’re on a different page (using a different term)? You think there’s something WRONG with the page I’m on? Well, let me tell you, YOU’RE the one who’s wrong! Because I’M the one who’s right!” You have better things to do with your time and energy than chase nomenclature.

    Liked by 1 person

  2. Alice Audrey

    It kind of feels line NW just crossed one of those breaking point boundaries. I never think it’s appropriate for a reader to tell a writer to change their book after publication. Complain about/review/ criticize, sure. But to out and out tell you to change it to suit their interests… it’s a bit like a salesman who wants you to change your lifestyle to make room for a product you have no interest in.

    Liked by 1 person

    1. Alicia Butcher Ehrhardt Post author

      I think reader/insider also didn’t like me mentioning Pride’s Children in the comments I made on someone else’s CFS blog.

      That blogger has the option of: 1) deleting my comment, 2) asking me to change it, 3) changing it herself (yup, bloggers have the right to do that on their blogs – John Scalzi does it all the time), 4) emailing me to tell me to cease and desist…

      But the blogger hasn’t – and I’m a regular commenter there.

      It’s easy for a blogger to control interactions on their blog.


      1. Alicia Butcher Ehrhardt Post author

        It’s fear – what if they don’t like me, my stories?

        But if you can’t master your own basic fears, and reveal your soul and your viewpoints and the way you think stories should go, writing is a hard way to make a bad living.

        Even writers who don’t go for ‘quality for the ages’ are better writers if they love what they’re doing.

        Writing is a CONTINUOUS business, whether you can make it pay or not. You put time into it you could easily/easier spend doing something different.

        If it’s your own stories, at least you have something to read that wouldn’t exist otherwise, and will be there for you forever. If it’s someone else’s characters and plots, good luck with the money part (which is NOT a given).

        Liked by 2 people

    1. Alicia Butcher Ehrhardt Post author

      Thanks for the link, and welcome.

      There is real pain, and there is real pain made far worse by doctors ignoring it. And telling the patient it’s all in their head! Like we get all this wonderfully compassionate attention because we’re in pain, or something – and we aren’t entitled.

      If it’s pain, just deal with it as best you can, doctors. Is that so much to ask?


  3. Sam Umek

    In my neck of the woods, it is still called CFS. Call it whatever you want. The people who want to learn more will, those who don’t won’t or they will complain. It is censorship. If we removed all the books from shelves because they were not “politically” correct, there wouldn’t be much left to read, including the Bible. In the Old Testament KJV, almost every disease was called a plague. Now, with newer versions, those diseases have new names. It is correct for the time period and if someone is knowledgeable enough to know that ME and CFS is the same disease, then they should have the common sense to realize that it has many names depending on the time frame, the country or the physicians or scientists and it shouldn’t matter. Those who are not knowledgeable of the terms will still learn about this disease no matter what name it is given. It is a wonderful story and if you so chose or not, the newer terms can be mentioned in the continuing story, just as it has been in real life. That is your perogative as the writer. Next time someone complains, just give them Rhett’s fabulous line, “Frankly, my dear, I don’t give a damn.” 😉

    Liked by 2 people

    1. Alicia Butcher Ehrhardt Post author

      Thanks for your support, Sam.

      As I carefully explain it for the reader in Chapter 2, page 26 in the paper version, in language and terms appropriate for the 2005/2006 time frame of the story – and you don’t even notice you’ve been brought up to speed because you’re listening to Dana ask questions, and get some things very wrong. And you see why Kary hates to be pitied. As we all do – we don’t want pity, we want our government and our researchers to find out what is wrong with us because it’s their JOB.

      When I think of the collective hours we could have put into solving the world’s problems, keeping our jobs, taking care of our families, it sickens me – all that time on Earth wasted. We do very well with what we have – everyone here has told stories of what can only be called superhero syndrome – but we’d go back to who we were in a flash if we could.

      Thanks for the Gone With the Wind reference, too – I agree.


  4. Jennifer

    How very hurtful: it seems so disrespectful of the investment you have already made in your writing. As you point out, nomenclature changes. I’m glad that you shared this, especially if sharing enables you not to let it fester. I agree: Advocacy isn’t a single suit of clothes.


    1. Alicia Butcher Ehrhardt Post author

      Thing is, the nomenclature just gets added to – and each new acronym starts from zero recognition. Yes, ‘fatigue’ is a bad choice for exhaustion; just as the designation PEM – post-exertional malaise makes like of the symptom of total collapse (‘malaise’ implies doesn’t feel well; I can tell you it it more like ‘is having trouble finding the energy to breathe’). So somebody changes that to PENE (post-exetional neurological exhaustion – or something close to that), and repeat.

      Changing names frequently is not helping, in my opinion. Of course, nobody wants to be associated with previous research ‘failures’ either…

      Round and round we go.

      But I don’t care – until someone is telling me what I can and can’t do. My energy for direct advocacy isn’t there, so I chose a different route for my contribution, since so much of my life has gone down that tube.

      I don’t tell them what to do – I try to go with the flow, and now use ME/CFS more than I’d like – since the explanation is even longer. Nobody expects to see leprosy replaced with Hansen’s disease in Ben Hur, or consumption with tuberculosis in La Dame aux Camelias.

      I’m tired – probably just babbling now. Thanks for your support.

      Liked by 1 person

  5. Catana

    Aside from the nerve of telling you that you should change something in your book, I don’t understand the problem. If you’re asked what CFS is, it’s a more reasonable term for someone to remember the next time they run into it. But maybe it’s just me thinking that myalgic encephalomyelitis is a bit much of a mouthful for anyone to remember unless they’re deeply invested in the subject. There’s a parallel with autism/asperger’s which get tangled in political correctness, but for somewhat different reasons, and which are often enough confused with a score of other conditions. Medical terminology practically changes with the wind, and when you mix in PC, plus ego issues, it’s just a smarmy mess. So stick to your guns, as I know you will. You say tomayto and I say tomahto.

    Liked by 1 person

    1. Alicia Butcher Ehrhardt Post author

      It will probably get me in hot water – NW has contributed time to the community; I haven’t – and can’t – except by my writing.

      But yes. And I am entitled to my own opinions, as long as I express them respectfully in the right forums, such as my own blog.

      I was rather ticked off by the email, and the following one, which I may add.

      Advocacy isn’t a single suit of clothes.

      Liked by 2 people

      1. Catana

        Community is all well and good, but if it judges a person’s value on whether they are a member or can contribute, in the ways it considers correct, then it can be a detriment to the cause it’s serving. Unfortunately, supportive communities almost always become exclusionary somewhere along the line.

        Liked by 1 person

        1. Alicia Butcher Ehrhardt Post author

          Communities that band together for protection want the members all on board with the same tactics – so they look bigger to the outside world.

          Well, we aren’t – three decades of being ignored by most of the medical people and being told it was in our heads, while we watched our lives go down the drain, has made us rather distrustful. Me, anyway.

          Liked by 1 person

        2. Catana

          You’re right to be distrustful. Organizations like to put themselves forward as speaking for all within the particular group. They don’t. An organization called Autism Speaks is a perfect example that presents itself as the only legitimate voice. It’s widely supported by the public out of ignorance, and widely opposed by people on the spectrum.


        3. Alicia Butcher Ehrhardt Post author

          IIRC, Autism Speaks wants to ‘cure’ autism, which is like wanting to cure blackness or gayness or Down Syndrome. Correct me if I’m wrong.

          Just knowing they ‘approved’ a movie puts it on my bad list.


        4. Catana

          You got it. They’re aiming not only for a cure, but ways to prevent it from happening. Basically, they’re pandering to parents of severely disabled children and children who simply aren’t the “normal” offspring that the parents expected.


        5. Alicia Butcher Ehrhardt Post author

          I’m afraid that they will decide that identifcation pre-birth – and selective abortion – is the ‘cure’ for autism. Which helps those parents NOT AT ALL. And tells people who are autistic that they are worthless. Instead of valuing their wonderful diversity and many gifts to the world. Yes, it’s more work sometimes, but so is helping people who’ve been in a car accident. So? And our soldiers returning from war with PTSD. So? The human condition isn’t meant to be fun, and is always fatal. So?

          We ALL deal with something, yes, even the super-rich and/or famous. Grow up, people. Help each other. Take care of those who need assistance temporarily or permanently – it could be your mom or your kid or you. And etc.

          Liked by 3 people

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