Such an important subject in terms of the layers of gaslighting and abuse this in turn creates over so many ocassioms where we don’t even know where to begin.
After 30 years of M.E I’m only just learning more of the medical terms for many of the symptoms I’ve had for many years… POTS/dysautonomia, hypoxia in tissues, dyspnea (breathlessness) and so on, only really due to the advent of this new virus creating more pwME
Thank you! I’ve seen my daughter struggle with this for decades. She spent time over many years putting together a fairly long ‘care plan’ which describes her history, symptoms, meds, needs etc This has helped a little but most practitioners are unlikely to read in detail & it’s so hard to summarise such a complex condition.
This is (another) excellent post. This issue of language within the social and medical context of ME is fundamental to changing attitudes, understanding and, ultimately, possible treatments. I've never used body-mapping myself (or been invited to by a medical practitioner) but I can see how it could help to make explanations of symptoms more concrete.
After years of doing the same with our daughter we decided to leave the battle and now use private doctors to trial well researched possible drugs even though they still don't acknowledge her situation they have allowed her to try. Hopefully one day we will hit the right drug👍
It really does still fall through the gaps of both everyday and medical understanding.
Phone battery is a good metaphor. I can’t remember where it came from but I also like the idea that you have to use an iPhone 4 that doesn’t even work properly, and when you do try to use it, it overheats and shuts down. Also you can’t replace the battery or upgrade and the charging cable keeps breaking.
Thank you for this great article. It is so hard to find the right words or terms to describe symptoms. Particularly the over-arching one of just feeling so ill / wrong. I’ve seen others describe it as feeling ‘poisoned’ and while that’s not quite right it does help convey it to others. It’s a lovely thought that the language will develop.
Such an important subject in terms of the layers of gaslighting and abuse this in turn creates over so many ocassioms where we don’t even know where to begin.
After 30 years of M.E I’m only just learning more of the medical terms for many of the symptoms I’ve had for many years… POTS/dysautonomia, hypoxia in tissues, dyspnea (breathlessness) and so on, only really due to the advent of this new virus creating more pwME
Thank you! I’ve seen my daughter struggle with this for decades. She spent time over many years putting together a fairly long ‘care plan’ which describes her history, symptoms, meds, needs etc This has helped a little but most practitioners are unlikely to read in detail & it’s so hard to summarise such a complex condition.
This is (another) excellent post. This issue of language within the social and medical context of ME is fundamental to changing attitudes, understanding and, ultimately, possible treatments. I've never used body-mapping myself (or been invited to by a medical practitioner) but I can see how it could help to make explanations of symptoms more concrete.
After years of doing the same with our daughter we decided to leave the battle and now use private doctors to trial well researched possible drugs even though they still don't acknowledge her situation they have allowed her to try. Hopefully one day we will hit the right drug👍
It really does still fall through the gaps of both everyday and medical understanding.
Phone battery is a good metaphor. I can’t remember where it came from but I also like the idea that you have to use an iPhone 4 that doesn’t even work properly, and when you do try to use it, it overheats and shuts down. Also you can’t replace the battery or upgrade and the charging cable keeps breaking.
This is so well expressed, thank you so much Ella.
In the 1985 Lake Tahoe outbreak all the inability to understand or believe in the illness vanished when people saw Dr Paul Cheney's MRI scans.
Overnight, doubt and disbelief was replaced by abject terror of getting the mystery disease.
This 👆absolutely!
Thank you for this great article. It is so hard to find the right words or terms to describe symptoms. Particularly the over-arching one of just feeling so ill / wrong. I’ve seen others describe it as feeling ‘poisoned’ and while that’s not quite right it does help convey it to others. It’s a lovely thought that the language will develop.
Yup - exactly this!