We talk about being ‘fatigued’ which isn’t a term I would use when I feel too ill too do anything.
‘Relapse’ is a vague rather meaningless term -
and don’t get me started on the term ‘benign’
Do these terms and others serve the medics better than us - it is easier for a medic to talk vaguely about us having a ‘relapse’ rather than have to respond to someone who is telling them they ‘can’t walk properly’ ot their arms are ‘weak’ etc.
Easier for a medic/neuro to pat us on the head and tell us we’re ‘fatigued’ when in fact we’re so ill we can barely move!
Secondary Progressive Multiple Sclerosis - has the psychological effect of this terminology on us and our relatives ever been assessed?
Really good points. The language often bears very little relationship to the utter dreadful times we often have.
Equally, the use of the word ‘flare’ instead of relapse, seems to minimise the symptoms. As well as the treatment options.
And what the hell is meant by ‘pseudo relapse’?
I totally agree with you about the word benign. How on earth can any kind of MS be benign?
And the ‘hug’. More like a nice friendly homicide attempt by a boa constrictor.
I also find that often people newly diagnosed are told they have the ‘least bad’ or ‘least disabling’ kind, or that they are ‘lucky’ to have relapsing remitting rather than progressive MS. Which in my opinion is deluded. Or just plain wrong. Being diagnosed with any kind of MS is terrible. And there is no comparison between the different forms. Just as there is no comparison between individuals.
the thing that bothers me is that we have become conditioned to present ourselves to our neuros using terminologies which don’t really explain how WE really feel - but it’s terminology that neuros/medics are happier with.
This thread puts me in mind of my mother in law, hereafter known as MIL; sorry I cannot offer any Les Dawson type jokes. She had been suffering with pains in various parts of her body and she took herself off to see her GP. After a cursory examination the GP diagnosed her with polyneuralgia. She was happy as she was given a diagnosis with a long composite Greek based word. The GP got rid of her with a prescription for painkillers and moved on to the next patient. My poor MIL is of the generation that reveres a doctor and laps us up any proclamations, without question, as if they had been vouchsafed by Apollo himself. Polyneuralgia is at best a description, as far as I can see, meaning nerve pain in many locations. MIL is now fully satisfied, probably verging on the smug, as she has a diagnosis and is taking ‘tablets from the Doctor’, as she puts it. Who am I to burst her bubble? Whoever thought obfuscation was confined to the work of lawyers?
similar thing happened with one of my older relatives - told by the dr that she was borderline diabetic she told everyone and wore it a sort of badge of honour that she had this borderline condition.
In reality she wasn’t diabetic at all but sadly she liked to define herself with this non-existent condition.
Back in the 1960s my mother had eye problems, among other things. On a visit to the doctor after some tests she managed to sneak a look at her notes (GPs weren’t very open about test results in those days). She saw “Probable MS” but decided not to have any further tests in case the diagnosis was confirmed and my sister and I were taken into care. She’s had no further symptoms, so I’d say that her MS is very benign, if she has it. Similarly, other than a dead patch in my left eye, I had no symptoms for 10 years after my bout of optic neuritis. That’s pretty benign, too. The problem is that “benign” just means that you have no new symptoms and your existing symptoms don’t get any worse. So someone might be left with a permanent disability, but their MS is still classed as benign if they have no other symptoms or relapses.
Pseudo relapse is a tricky one. I sometimes feel like I’m having a relapse - weak, shaky, trouble walking. After a day or so, I’m fine. What I’ve experienced is a pseudo relapse because it lasted less than a week. I feel rough when it happens, but the short duration of the effects means that there’s been no serious damage.