I have a close friend who also has a neurological disorder - we also have in common a medical department and consultant neuro, or did till very recently, when departmental changes made said neuro head of neurology, and she saw someone else. She has had her dx for many years, and suffered from it for at least 30 years, bringing up kids with it, and holding down a significant job in public service. Recently she has had quite a lot of stress, losing several very close family members and friends to cancer and other things, as well as having to deal with what I can only describe as severely unkind group dynamics within her faith group. She is normally a feisty and fun person, and has over the course of her illness not only achieved a lot, but also been a major source of support and generosity to many many people. Over the last year her condition has worsened and she has spent a lot more time in a relapsed state than otherwise. Her disease has always been somewhat atypical but the treatments available have helped her through. She was recently hospitalised, and had an increasing sense of a certain type of hostility towards her though she was careful to vet herself for any feelings of paranoia:I have to admit she isn't the worlds greatest patient, and has a very obvious aversion to hospitals. By the time a hospital bed became available to her as a non-urgent patient (a week later than she really needed it) she was already remitting some, though it has been a long time since she has had a true remission. She returned home with a letter to her GP, which said no further follow up was needed, and using a term she did not understand describing her diagnosis, and not the name of the condition she has.

I looked this term up - it seems to be a modern euphemism for what in previous times was called hysteria, or illness of psychiatric origin. Her GP has discussed the letter with her, and is outraged by it. I have not offered her any insight into what this particular term means, neither has her doctor, though it is clear from other things that her dx is being called into question. She is understandably devastated by this, her 'label' has helped both her and her friends and family to come to terms with her illness, which has often led to her being close to death from inhalation pneumonia, very acute infections, and as it is an auto-immune condition she has often been on syringe drivers and intubation for long periods of time.

I would be interested to know whether anyone here has encountered a sort of institutionalised judgmentalism that seems as potent as racism, or misogyny, especially as with this particular diagnostic slot more than 2/3rds of people who acquire it are women, - one of the 'symptoms' is being knowlegeable about ones own condition, and the medical terms that describe it..........!!!!

I suppose that I am asking about this here for a few reasons:

1. That most of us here DO have this well-informed pro-active attitude to our equally difficult to diagnose neurological condition, and perhaps this medium, the internet, is actually challenging empirical medicine and its methods of discussing illness/disease.
2. That from what I have read here there are quite a few of us who have had doctors try to give a psychological explanation for our symptoms.
3. That neuros, specialists, doctors, etc. in being able to use such labels (and they are NOT psychologists or psychiatrists) and put them on record, sometimes, as in this case, with only a very passing acquaintance of the patients medical history, which can then colour the views of any other medical personnel. and influence any future treatments.
4. That people of a certain age may be viewed as being in some way not competent about their own lives, health, decision making, and may be put into this particular box AT ANY TIME, regardless of whether they are actually showing signs of the mental health issues that may accompany aging, or simply are stressed by events in their lives.
5. That there is not, in my country at least, an easy mechanism to get a different opinion.
6. That neurology seems to have an inordinate amount of male professionals, at least in my neck of the woods! (sorry, all you reasonable males out there)

Just to add to this, my friend IS showing signs of a deterioration in her health, and is quite frightened by it as she is only rarely experiencing any full remission - this is manifesting as high anxiety, with a sort of desperation, and her hospital experience just heightened it. She is on a rather heavy drugs regimen, including some pretty potent pain relief medication, that seem to have side effects such as a very unusual level of forgetfulness, and sometimes some confusion. These go away as medication is reduced and her condition improves.

As an adjunct to this whole situation one of the issues with her faith group was a group belief that illness and disease are not 'real', that in some way you make it for yourself, and she was marginalised in this group for not being able to make herself well again. This does not actually reflect what her faith teaches, and was a very full on and difficult experience.

I am sorry if this has been a bit long-winded, but it has raised so many issues for me, and to be honest I am struggling with my own feelings too, as I know how demoralising it is to go through the daily grind of living with a long term condition and all that it entails, only to have someone who barely knows you imply all that limitation and frustration, pain and genuine disability is some kind of self inflicted subconscious lie.

I would be grateful for any insights, I know not all health professionals are like this, and that there are plenty of good experiences, and good doctor patient relationships too.

Lindy