Whitney Dafoe Updates

Speaking about coming out as having ME/CFS.

I've been mistreated over having this illness right from the beginning, which probably did a lot of damage to my self esteem and delayed the diagnosis by 10 years.

My now estranged father is a doctor of internal medicine who does not believe in CFS. Well before I even knew that I had CFS, he told me a story about a nurse who was nearing retirement and according to him, claimed to have CFS because "she just didn't want to work anymore". I don't believe this was a coincidence. He knew I probably met diagnostic criteria but believed it was a psychosocial problem and that I needed to be discouraged from viewing myself as having an illness.

The long term outcome of illness denial in my case was not a healthy, happy patient as the BPS zealots believe, but someone who suffered a lot more than was necessary and who now deeply hates anything BPS related.
 
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Mij said:
@Invisible Woman

How common is this?
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Very common in UK. At least i have seen many many many accounts of such things.
So common as to border on being normal, standard treatment, where if you escape abuse it's something to report not the other way around.
My own experience is similar to @Invisible Woman but not as bad, & i consider myself lucky to have got off so lightly.
Mij said:
So is it the "label" of ME in particular that people are prejudice about in UK and other parts of europe? Or is it from having a chronic illness and being disabled?
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I think people with other illnesses tend to hide it because they dont want to be patronised or thought to be unable to do things - eg passed over for promotions at work, treated like a child who isnt a contributing member of society etc, whereas i hide it unless i must tell, because i fear the abuse that i've experienced before.

None of it about being ill, all of it about having ME. And compared to what others i know have been through over the yrs, mine is average, not at the bad end of the scale at ll.

I am so surprised that some people haven't experienced this/heard all the other people who experience such abuse. Pleased, but astonished.
 
Shaming, mistreatment, prejudice and abuse has been the defining experience for me of having ME. It has always been a heavier burden to bear than the illness itself, and the illness is already a heavy burden.

If I were to tell an alien about what having ME is like, I might forget to talk about symptoms, even though the symptoms are so limiting and life destroying, because if someone asked me «what was it like to have ME on earth?» the first thing in my mind are the questions like: Why did people punish me so much for it? Why did it make me unworthy of empathy or trust? Why did they make it seem like it was my fault?...
 
rainy said:
If I were to tell an alien about what having ME is like, I might forget to talk about symptoms, even though the symptoms are so limiting and life destroying, because if someone asked me «what was it like to have ME on earth?» the first thing in my mind are the questions like: Why did people punish me so much for it? Why did it make me unworthy of empathy or trust? Why did they make it seem like it was my fault?...
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totally, totally with you on that.
 
JemPD said:
I am so surprised that some people haven't experienced this/heard all the other people who experience such abuse. Pleased, but astonished.
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I'm one of those who's always surprised – and horrified – by the stories that others tell. I simply haven't experienced this kind of abuse from anyone I know personally.

It would never occur to me to hide my diagnosis, or to assume that others might need to. I guess that's a definition of privilege, isn't it? I've been struggling to understand why my experience has been so different, but I don't think I have a clear understanding.

Perhaps it's partly because I'm autistic and engage with people on my own terms. I've lived happily alone since the age of 17, won't put up with toxic influences, and whilst I've had relationships, I've never needed a partner.

Same with family. Mine was pretty small anyway, but if any of them had gaslit me, I'd have cut ties. My mum, bless her, had all the natural empathy of a petrol pump, and she really didn't get it. But she wasn't a damaging influence; and to be fair, if I didn't have ME, I wouldn't get it either.

I suppose if you can take family and intimate relationships out of the picture if necessary, you've probably removed a good 80% of the possibility of significant harm? Maybe that's part of my answer. Another part is undoubtedly that I've never had severe ME for more than a few months at a time, so I've never been completely dependent on others.
 
Extremely Severe ME/CFS—A Personal Account

"A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included."

A 25-page-long article by Whitney Dafoe, published in the journal Healthcare. You can download it in PDF.

https://www.mdpi.com/1088982
 
So I started reading it and although I'm far from being finished, I found this part very interesting about sensory sensitivities.

When I say that I became extremely sensitive to stimulation, or when you read this about severe ME/CFS, it’s not always sensitivity to the stimuli itself. The stimuli, whether it is a sound, a sight, smell, or touch, could connect my mind to something and it was this connection that often pushed my mind over its limit. The sound of people talking, for example, was too much human connection for me to tolerate. Interestingly, it was much easier to tolerate hearing people I didn’t know, like neighbors, talking. This is because it caused much less thought, because I didn’t know the people. When someone I knew spoke, their whole personality and my memories of them, etc., were forced on my mind and this was much more thought-provoking then an unknown voice.

Sounds or other stimuli that had no mental link to anything could also be too much, simply because they are something for the brain to process. This is why I wear earmuffs and earphones playing white noise, along with a folded towel over my eyes, when someone comes into my room (see Figure 5). I need to isolate myself from the human presence and, in general, I need to isolate myself from the world. This is also why you see severe ME/CFS patients wear eye masks, baseball hats and other apparel or devices to help isolate themselves.
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Wyva said:
So I started reading it and although I'm far from being finished, I found this part very interesting about sensory sensitivities.
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I too have read it, the whole article, and I found all of it very interesting, deeply moving.

(And very very different from my own experience of living with severe sensory sensitivities, completely different to my own coping techniques etc.

I was kind of hoping it would be the kind of article I could share with others to help them understand my situation a bit better, even though my ME is much less severe than Whitney's. But it's not, our experiences are just too different.

I'm very grateful that it comes across so clearly in the title already, that it's a personal account and not meant to represent us as a group.)

So courageous :hug:
 
I also just read dear Whitney's piece. I became weakened, devastated and crushed as I once again faced the reality of what living with this hell is like. My own daughter daily tells me that I do not understand what she is going through, and she is being accurate and making some kind of plea. But even more troubling: how can the world of research, medicine, government have abandoned so many young people in all corners of the world, and often been so cavalier with them as well. Thanks Whitney for your steadfast courage and profound honesty.
 
Could someone advise whoever needs to be advised that there is a small error in the document?

About 3/4 of the way down it says:

"This happens to be Ronald David’s number one piece of health advice..."

I.e. 'David' instead of 'Davis'.

Thanks. I have pretty-well read it all now. Impressive. It would be wonderful if he could escape from the hell he's in and function properly again.
 
Perrier said:
But even more troubling: how can the world of research, medicine, government have abandoned so many young people in all corners of the world, and often been so cavalier with them as well.
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I ask the very same question, @Perrier . If accounts like these do not spur these folks to action, what will?

How much more clearly can this community communicate our suffering and pleas for help?
 
As Whitney says:

"I would like to ask you to not speculate about what this drug is or hype it up into more than an experiment and possible treatment. You will never guess what it is and if you did you could do great harm to the availability of the drug by taking it in the wrong way and hurting yourself. Please respect this so I can continue to keep you as informed as possible"

i can't fault the guy for trying something. Especially, as he's got very knowledgeable people helping him work out what to try and how to try it.

Even with that level of knowledge and support, it can still go wrong.

I hope he improves soon.
 
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