A Life Hidden - Blog posts by Naomi Whittingham

This is very good and very well written. I particularly like the tone. We all have to try so hard to moderate our language and bend over backwards to seem reasonable because of the lies and stereotypes that have been propagated about people with ME, and Naomi has got it spot on with this in my view. I hope doctors and others will take heed of the message.

One minor observation. Naomi writes:
All it would have taken was for someone to listen – really listen – and to respect my perspective as one that could and should be trusted. Had this happened, the course of my illness would have been very different. I would have received treatment that was appropriate to my needs, and which allowed my body the chance to gently heal, rather than being forced into activity that only worsened my suffering and left me permanently disabled.
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I fully agree with the need for doctors to listen etc. but I don’t think we know enough about ME/CFS to know what the course of anyone’s illness would have been if they had been treated differently. Yes, the quality of all our lives would have have been improved if we had not been mistreated, but I don’t think we can say with confidence that anyone’s body would have been able to heal or that anyone would have been prevented from being permanently disabled.

Although I agree with Naomi’s message, I also think it’s important to emphasise that even with the best advice and care, the prognosis is poor, and the need for diagnostic tests and effective treatments is urgent.

I’ve often wondered if my condition would be significantly different now if I had been given better advice at the beginning. The quality of my life would certainly have been better. I would certainly have suffered less, both physically and mentally, but I don’t know if it would have affected my level of disability.

Although doing too much makes me worse, one of the difficulties for me has alsways been that staying within my threshold rarely makes me feel much better. So even when people were saying “don’t do too much,” I still found it hard not to push myself because I wasn’t noticing any positive effect of resting, and I didn’t know if the advice was correct or not.

If the physiology was understood, and someone had been able to explain what was wrong with me and what the negative effects of exertion would be and why, it would have been much easier to heed the advice.

Thanks again to Naomi for writing this positive and helpful article.
 
Thank you for sharing the article here and for all your comments. :)

Robert, I take your point about none of us being able to say with certainty how our illnesses would have progressed under different circumstances. I do feel in my case that significant damage was done by the way I was treated, both physically and emotionally. I believe I would have been much better off had I been treated correctly. But of course it’s impossible to quantify that, and as you say, ME remains a severe and very disabling condition even when met with compassion.
 
"…. the diagnosis of hysteria applies to a disturbance of the doctor-patient relation- ship. It is evidence of noncommunication, of a mutual misunderstanding. As things are, with too little time and too much pressure, we do not listen to half of what our patients tell us; and what we do take in we may distrust or dismiss.., patients are entitled to a realistic appraisal of their position and its outlook, just as we might expect one, fair or foul, from our financial advisers .... The patient is our principal.., entitled to the best-informed account of his state.., his agent can provide. Evasions, even untruths, on the doctor's side are among the most powerful and frequently used methods he has for bringing about an efflorescence of "hysteria"."

Slater E. What is hysteria? New Psychiatry 1976 14-15.

This thread brought to mind this comment by Eliot Slater from 1976 on the subject of hysteria. There is reason to believe that he might have had in mind, in part, the views of and treatment of ME. Nothing seems to change.
 
Robert 1973 said:
I’ve often wondered if my condition would be significantly different now if I had been given better advice at the beginning. The quality of my life would certainly have been better. I would certainly have suffered less, both physically and mentally, but I don’t know if it would have affected my level of disability.

Although doing too much makes me worse, one of the difficulties for me has alsways been that staying within my threshold rarely makes me feel much better. So even when people were saying “don’t do too much,” I still found it hard not to push myself because I wasn’t noticing any positive effect of resting, and I didn’t know if the advice was correct or not.
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You are right. I too still find it hard to take the amount of rest I should, especially as the results take ages to show.
However, in the first few years (before learning about this CFS/ME business) I was doing my best to do whatever my GP told me, and had he explained the possibility of deteriorating from doing too much rather than "Just be active, take up sports, do fun things, that's good for you!" things would have definitely been different. Additionally, the very common position of "if you just exercise there is no problem" is also the reason I have to appeal and/or take to court practically every single application for disability/help/services. Which in itself makes me overexert even more.

So yes I agree our own temperament is a factor in how things 'would have been', and we might have ended up here with all the best advice in the world too.

However, reading "people have the best chance of recovery with lots of rest right at the start" several years after onset was a hard pill to swallow, and that shouldn't happen. Everyone should at least get the option to try and see if they could be such a best case scenario.
Skipping that regret might also be a version of 'better' :)
 
A new – and very moving – article by Naomi Whittingham

Glimpsing the World: My Joy and Pain

https://alifehidden.com/2019/07/26/glimpsing-the-world-my-joy-and-pain/

There is an indescribable joy in experiencing the outside world after many months or years of incarceration. The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze. When darkness and isolation have been the foundation of life, these simple experiences are cherished. There can even be beauty in less obvious places: I have felt wonder on seeing things like traffic lights and motorway signs. To the housebound eye, these sights are the pulse of a living, active world. As such, my heart seizes them…

“It is perhaps only in glimpsing the world again that one truly knows the deprivation of being shut away from it.”
 
The prose, as ever, is beautiful.
The sense of loss is tangible.
The oxymoron of happiness and grief a poignant reminder of how much this illness strips away.

I'm so glad you have managed outside, it gives those in gilded bedroom cages hope.
Thank you.
 
Beautiful and very touching:
The reminder that there is a world of colour and light and space out there can be a boost to the soul – and also a deep sorrow. Because for each hour I spend outside in sunshine, I have passed a thousand days in great suffering. I have hope of the experience being repeated, but also the knowledge that the darkness can swallow me again at any time.
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Naomi is a wonderful writer
I think that personally the whole response effort from nhs, MRC and our two main charities has been as if severe ME doesn’t exist. Low level measures, no targets , no urgency, little actually protesting. Everyone with power is acting as if it is an illness of the walking wounded, because if you actually seriously recognise the plight of the severe why would you act in the way they do. It’s horrendous, I’m so aware in the summer, people showering ( I struggle to maintain hygiene), wishing each other great weekends on tv, the kids off school ( I haven’t been able to have kids) so it’s family time. Everyone free and outdoors and having fun. The contrast is so strong with severe ME which is like being trapped in isolation in a dark bunker hot and feeling ill. And the official response is, never mind we hope to learn a bit more over the next thirty years ...

Just as an edit, I think that they recognise severe and bedbound ME as a temporary grim stage, usually in their minds at the start, from which you just get significantly better , so that’s alright then. I don’t think they recognise severe and very severe as chronic states of struggle or the end part of a decline.
 
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On the relatively rare occasions that I see an open landscape, my mind is overawed by its scale. I am used to my horizon being measured in a matter of paces, from one wall to the next. To see it stretch almost to infinity is to realise the dimensions I am meant to live in. The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence.

“Colours so bright with the radiant light of summer. The contrast of intense sunlight and deep shadow. Vast, open space all around allowing hope to expand.”
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I’m so pleased you were able to manage this trip to the seaside @Naomi10 and enjoy the beautiful open landscape. I found it quite moving to read your article and see the photo of you sitting at the top of the cliff looking out to sea. Thank you for sharing your experience, the joy and the pain. As others have said, your writing is really beautiful and poetic.
 
Snowflake said:
I’m so pleased you were able to manage this trip to the seaside @Naomi10 and enjoy the beautiful open landscape. I found it quite moving to read your article and see the photo of you sitting at the top of the cliff looking out to sea. Thank you for sharing your experience, the joy and the pain. As others have said, your writing is really beautiful and poetic.
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Thank you so much, Snowflake.
 
@Naomi10 I love your blog and this piece especially.

I have been trying to write and process these feelings for some time. I have had periods where outings were so upsetting and grief-stricken that I would then beat myself up for not enjoying them and making the most of these brief moments out of the usual housebound monotony. I didn’t know how to get out of this awful state.

It is easier now, I think it gets like that when there is just not enough pleasant experience to counter the suffering, struggle and monotony of life with illness; coupled with the fear of the future and the weight of knowing so many like us. Grief has been my almost constant companion these two decades, though it shifts and changes.

When I do something different or witness something magical (such as dippers on the river near my house) it certainly brings home that these wonders are always out there, and the longing to be able to access them more often is so great.

I hope you will get up there again. The breeze on the skin is something I have found so wonderful and that I never really appreciated before being ill.
 
ProudActivist said:
@Naomi10 I love your blog and this piece especially.

I have had periods where outings were so upsetting and grief-stricken that I would then beat myself up for not enjoying them and making the most of these brief moments out of the usual housebound monotony. I didn’t know how to get out of this awful state.
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Thank you @ProudActivist
And yes, that’s exactly it.
 
New blog post from Naomi Whittingham
Beneath the Surface, Part 1

The first of a three part series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me.

As this is a lengthy piece and will likely be a challenge for those with severe ME, I have included a short summary at the end of each section, for anyone unable to read the full text.

Part 1 contains the following:

  • Introduction
  • The positives
  • When compassion is misleading
  • Overview of concerns
 
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