I can’t find the words

There’s a link doing the rounds on Facebook about a gay couple – one has HIV and the other severe ME.  The HIV partner says that he’d rather have HIV than ME any day of the week because he’s less sick and disabled by his illness than his parter.

I don’t like comparing diseases.  If you suffer from something then you suffer.  End of.  But I can understand why people with ME compare their illness to other diseases.  It’s because:

  • ME isn’t taken seriously and
  • There is nothing to see and
  • There are no words to describe how sick you feel.

There is an abject lack of compassion and understanding for ME patients both within the medical world and the public that just isn’t seen in any other disease.  In fairness, I think the ME/CFS community often fuel this.  The only stories you tend to read about ME/CFS in the media are about mildly affected patients who tried some wacky diet or therapy and are now cured and have re-started their mountaineering hobby.  The fact they obviously didn’t have ME in the first place and were mis-diagnosed seems to skip reporters by.  I can’t even read this shite any more because it makes me want to kill someone.  You hear virtually nothing about severe bedbound ME patients because they’re too sick to give interviews, don’t recover to any significant degree and the media don’t like stories with no happy ending.

I get frustrated that people with ME share links and information about ME on ME forums and with their ME friends on Facebook which is such a waste of precious energy.  ME sufferers already ‘get it’!  If patients want the public to ‘get it’ they need to spread the word outside the ME community not within it!  Which is why I don’t tend to write a huge amount about the politics of ME here on my blog.  The only people reading my posts are other sick people, who already understand the situation but are too ill to alter it as it needs Government led change.  Bravo to people like Jen Brea who is trying to alter the situation on a massive scale – I don’t know how she does it as poorly as she is.

When I was bedridden there wasn’t much to show for the fact that I was at death’s door.  I was under-weight because I could no longer chew solid food.  My speech was affected.  My hands and feet turned in like you see in head injury victims and I was very pale, but other than that there was nothing much to see.  Even when critically ill I didn’t really “look sick”.

When Doctors would ask me how I felt I, with all my education and articulate expression, could find no words to explain my symptoms.  Exhausted just didn’t cut it.  Nauseous didn’t cut it either.  Neither did weak, or ill or………….even now I can’t think of how to describe severe ME to anyone.  Should I have to?  I liken my nausea to that experienced by cancer sufferers undergoing chemotherapy, but they don’t have to describe their nausea to anyone.  The second someone says they’re having chemo everyone ‘gets it’ and understands how dreadful the treatment can make you feel.  But with ME we’re made to try to put into words symptoms which simply can’t be adequately described.  I felt so ill I would wake every day in awe that I could feel that bad and still be alive – it still amazes me to this day that my body pulled through.  So when ME is trivialized in the media as an illness which “leaves you exhausted” I just despair.  If being tired was all I had to worry about I’d class myself as one very lucky individual.

I don’t know the answer as to how to get across to the general public how ill ME can make you feel and, although I don’t personally find it helpful to compare our disease to others, I can understand why ME sufferers do it.  They’re desperate for legitimacy and a modicum of understanding of their suffering.  ME has been compared, by leading doctors in the field, as similar to the end stages of heart failure, cancer and AIDS.  Note the words “end stages”.  By this time people with advanced heart failure, cancer and AIDS are dying and will soon be out of their misery.  The difference with severe ME is that this horrendous pain and suffering goes on for years, decades, and that’s what makes it so unbearable.

I’ll leave you with another link doing the rounds on Facebook from Healingwell.com which I found particularly pertinent, especially with the current demonization of sick people here in the UK.  For all the times I fake being well I deserve an Oscar.




8 thoughts on “I can’t find the words

  1. Alan Lewis

    I think it’s critically important to be able to describe symptoms as clearly as possible to medical professionals. That’s how they work, that’s how they can distinguish one problem from another when the symptoms overlap and very similar. It helps to develop understanding and support. Without understanding people simply don’t know how to support. I don’t see it as attention seeking or self pitying, but more educational. It’s especially important for illnesses that are poorly understood. Humans believe what they see unless they are shown otherwise.

    (BTW, love the image at the end of this post!)

    Liked by 2 people

  2. fuckingdysautonomiatogether

    I’m fairly new to the world of being aware of M.E., but I do have a question. Is there any way to put into words how much damage has been done to the stigma and lack of understanding of M.E. because of the use of the term CFS?
    To your point about how people within the community already ‘get it’: to add an outsider’s two cents’ worth, “neuro-immune disease” makes a big initial shock wave. I’ve been struggling with the same question, on how to help new people cross the initial hurdle into trying to fathom it (“it” for me having been chronic illness, invisible illness, EDS, and others). When I read “neuro-immune disease” for M.E. it helped elicit the feeling of not even being *able* to fathom it, which in turn helps initiate the desire to try.
    New to the blog, I love it and thank you.


    1. Jak Post author

      Thanks for the comment and glad you’re enjoying the blog 🙂

      The whole CFS v ME is a massive can of worms. Mention it online and you are likely to get a huge response with everyone disagreeing, so it’s not something I ever bring up because I can’t deal with the stress! I do not, nor will I ever, call my disease CFS. However some people with CFS find my attitude dismissive of their own illness experience. It’s counterproductive helping one patient population if in doing so you harm another. But in answer to your question, rebranding ME as CFS and watering down the diagnostic criteria has done untold damage – to both groups of patients. You’ll find my post on ME v Chronic Fatigue here https://mastcellblog.wordpress.com/2014/08/01/cfme/

      It’s good to know from someone new to ME that using the term ‘neuro-immune’ disease has helped you think of ME in a serious way 🙂

      Jak x

      Liked by 2 people

  3. Ryan

    I really enjoyed this post. You poignantly describe a problem I’ve been facing with friends ,family, and Dr’s for awhile now: ME/CFS, to those who suffer from it, is virtually beyond description (at least to the degree that satisfies people who don’t have it).

    Liked by 1 person

  4. kneillbc

    Gotta say to the woman giving it to dysautonimia, go for it! And from now on, I will be using ‘Neuro-Immune Disease’ in the description of severe ME, because of the life of me I can’t say ‘myelitic encephalitis’, and I hate using ‘CFS’, so I end up stumbling around for the words! I don’t have it (oh thank God), but I’ve glimpsed it when my MCAS is at it’s worst. It’s SO beyond exhaustion, heaviness, illness, that it is indescribable. The more ways that those of us who don’t have it, but who do ‘get it’ (I think I get it…) can describe it, the better.
    In a recent post you spoke about the fact that people are so much more sympathetic to your EDS than your ME or MCAS. Of course, they’re all invisible, but EDS is really easy to visualize and put into words (it’s sometimes even visual from a brace or wheelchair, but often not). I think you’ve hit the nail on the head, it’s because it’s impossible to describe.

    Liked by 1 person


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