Stigma and sadness

About stroke
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Horrible experience, if not awful, if not dreadful. Was in the pub tonight, with a friend who has chronic depression, thought we’d have a little indulgence and have a pint together as a treat. Let it be known we’d not had a pint together for at least a year. Turns out, woman opposite was a neurologist called Beth (NHS) , by all accounts someone trained in neurology. I tried to explain my condition, post cerebellar stroke, to no avail. She rejected all cerebellar research and basically dismissed me as a fraud as she chugged down her drinks and moved to another table to continue on drinking. Such a rude and obstinate woman I have never come across in my life. Now I have 100% for NHS staff needing to do their job but this is the first time I have come across someone from the NHS who felt the need to put me in my “place”. It was saddening and disgusting, vulgar and disappointing. She was so convinced that CCAS didn’t exist that all all I could do was apologise for for being such a fool am I. Terrible night.So demeaning but it made them feel superior. I feel a bit sick at cowering to bullying but they were all bells and whistles so who gives a toss.

Can I add that her partner said to me, “If you weren’t disabled, I ‘d punch you in the face”. For what reason, I cannot fathom. Perhaps questioning her authority on neuroscience, perhaps. Or perhaps he disliked my cheerful disposition, he was a miserable looking prat in a hat and reclining scowl.

All I have to say is this …

Can I just say as an addendum, she kept on saying to me that I didn’t look like someone who had had a stroke. This is infantile, but I let it go. I don’t have a hand that doesn’t work or I’m not in a wheelchair. However, I can’t see the world straight and my brain can’t predict reality. That should be enough. Seriously, such a toss pot, I am still fuming.

On the upside I know the barmaid there and think I have a fairly good report with the staff. Only downside is that it sent me on a low dip. Enough to call friends, family and post this. :flushed_face: I can usually hold my own, but when speaking to a professional, I had a setback because she was convinced that that the only role of the cerebellum was in motor control. She had learnt by rote from a textbook allocated to her time and study. Worrying and typical of someone picking up a pay check as opposed to new ideas, no wonder I get in trouble :laughing:.

In fact, it because this woman who didn’t believe I had had a stroke that it is 4. 45 am and I am vomiting into a bucket from existential anxiety, Well done you, I say to her. Job done. Hope you get a nice fashionable scarf at everyone else’s expense. Oohhh, even I can feel my bitterness. :lemon:

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Hi everyone
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@Rups

It is horrid to be overwhelmed.

I missed your phone call. Tried to return it to no avail.

I hope you have managed to settle down after your unpleasant encounter.

It’s just after 6.00 am here.
I’ve been worrying over a different matter of my own.
I’m putting it down to a difficult phase that I hope I can get through unscathed.

Take care buddy.

I’ve heard, somewhere, that there is light at the end of this dark labyrinth of tunnels.

:fire:

keep on keepin on

:writing_hand: :smiley: :+1:

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They have to go home and be them; you can go home and be you. They must be seriously lacking if all they felt appropriate was what they did. Unfortunately, being crass and stupid doesn’t stop people like that from having an opinion. Sorry you had such a bad time. You are among friends and empaths here.

I give you the witches’ curse, “May their deeds return to them tenfold”

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I would have replied ‘You must earn a fortune if you can see into peoples brains without a scanner’

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Sorry but I can’t put on here what I would have said to them. Take it with a pinch of salt and be you. You know how things are with you.

I often get people saying. What you have had a stroke. Butt they say it with kindness I’ve never had what you went through last night. But like i said at the beginning. They would get the full force of me.

Take care

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You have every right to be bitter @Rups my goodness I’m sick of so called experts being nothing but ignorant while thinking they are god-like,is narcissism part of nursing and medical degrees? What happened to the Hippocratic oath and the nightingale pledge?you are an authority on cerebellar strokes, I agree saying “you,don’t look like you’ve had a stroke” is infantile,what should we look like,perhaps we should turn green?In this case you should’ve and done an Incredible Hulk number on her!:nauseated_face: rups you ultimately know that you are right,she would’ve gone home and educated herself,so in that case,job done :check_mark:

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So sorry that you have experienced this appalling behaviour and from a so

called "professional " . I wouldn’t want to be one of her patients. Try not to dwell on the situation and I hope sharing this with our community has been helpful.

Best wishes, I hope you are feeling better soon.

Regards Sue

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I am lost for words @Rups how awful that anyone could behave like that & being a medical professional makes it even worse. I was made to feel like I was making things up by a professional once & i was very upset by it. Just because someone doesn’t fit the “norm” doesn’t mean it isn’t the case.

I hope you are feeling a bit better about things today. Try not to dwell on it. She is not worth it.

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Quite clearly this woman is a complete eejit, sounds to me she was trying to “show off” due to insecurity regarding her own self image. Obvs this doesn’t help when you are on the end of this upsetting behaviour. I get this all the time, you don’t look/act like you have had a stroke…even tho I spend time explaining the sheer horror of it all….little do they know they are talking to an incipient psychopath now, so they better watch it!!! I do hope you are feeling better today….i was awake all last night too, curiously enuf….existential angst, it’s the pits eh…feel rubbish today, must struggle oot with the dugs tho….hope you can chill the rest of day….mebbe a squirrel aroond in the freezer find summat nice to eat?

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I am happy to echo this curse so that tenfold by tenfold becomes one hundred fold.

@rups - Rupert, well done for reaching out after such an awful experience. Right noe, I can pretty much echo everything that the members have said.

Maybe now is not the time, but perhaps when you feel you are up to it, I wonder if I might ask how this came about. I say this with a view to trying avoid being involved in such an incident myself or indeed anyone reading this.

For example, how did this Beth get involved with you and your friend who you were indulging? What prompted this stranger and her partner to get involved to such a degree and cause so much distress. Btw, I hope your friend hasn’t got even more depressed as a result of witnessing this event.

So sad!

:pray:

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It was all a bit odd really. We were sitting opposite them, there were four of them, and one chap was talking about fertilising his fields with a drone. This intrigued me, so I began talking to him briefly. This led to me talking about the farm and having to stop work because I’d had a stroke.

The woman in question, who hadn’t been engaged with the fertiliser conversation, turned to me and said that she was or had been a neurologist and she could assess that I don’t look like I’d had a stroke. Well, this in itself wouldn’t have been a problem if it was an average Joe who made the remark, as has happened many a time, but the problem was that she said it as if that was her professional opinion.

I then went on to explain about CCAS and issues related to the cerebellum such as prediction signalling mismatch and dysmetria of thought. What really got my back up was that she dismissed it all as nonsense, stating that the only role the cerebellum plays in the brain is motor skills. I tried to explain further and she smugly said to me, where did you hear that? The debate didn’t get angry but I didn’t hold back in the moment, letting her know that her opinion was archaic and rote learning from a distant outdated era. It was her smug, you don’t know what you are talking about manner and to add insult to injury, you don’t look like you’ve had a stroke. It brought up a lot of triggers because I had a mental breakdown from my partner’s brother going around telling everyone he didn’t believe I’d had a stroke. I have some PTSD about that, also why I go to therapy. It began to feel that she was almost out to prove that I hadn’t had a stroke and frankly this made me quite defensive. I have since learned that this is called Medical Gaslighting.

Anyway, they moved off to another table. Good riddance. I phoned my cerebellar stroke survivor friend and had a vent to him. He calmed me down and suggested I just go over, apologise and leave it at that. So, that’s what I did, but minutes later her husband came up to me and made that absolutely shocking remark that if I weren’t disabled, he’d punch me in the face. I sometimes get this for just existing; people who just don’t like the cut of my jib. His caveman like antics got him nowhere of course. I have never been in a fight. I was punched in the face once as a teenager at a party because some ruffian got it into his head that I must be homosexual because I wore a trilby and braces at the time. We hadn’t even spoken.

No, I think it was probably the most exciting thing he’s had to deal with all year. It’s a shame really because I so rarely go out to the pub, and out of the five in the town, I like that pub the best because it is quiet. I’m generally okay with confrontation and can handle myself quite well, but this was a trigger topic and she pulled the trigger.

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I appreciate it. I went on a phone spree because I was so rattled and couldn’t talk to my friend about it because he can’t cope with drama.

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Diolch yn fawr for all the supportive comments. I’ve felt very flat all day. It’s not so much the event that makes me feel that way, it is because I like to think that someone who devotes their life to something would be interested in hearing from someone with lived experience and at least be curious to developments in neuroscience. Never mind, I just have to think that perhaps something awful was happening in her day and I just came under the firing line.

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I think you may have hit the nail on the head with this.
From what you have said, I just think you were unlucky on this occasion and on another day the conversation could have gone another way. Perhaps the saddest part is the role of Beth’s husband, but again, as ridiculous as it may sound, he may have felt his wife was “under attack”. Maybe he knows she is vulnerable and doesn’t deal with her competence being challeneged.

I think the best thing you can do, and you have already hinted at it, is to let it go. It’s water under the bridge. Medical gaslighting is not that rare and I am sure we all have encountered it at one time or another. As you mentioned, this happens when individuals are in that state where their "opinions are archaic and rote learning from a distant outdated era."

Try and get some rest. You’ll feel better for it.

Take care my friend :slight_smile:

:pray:

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Well said Rups and ManjiB. So much of life involves management skills. I’m sorry you had to endure this idiot but just think - they have to go home and be them, whereas you can go home and be you.

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Rups, I’m very sorry to read your message and to see how much the idiots involved have upset you. Never let these sort of morons who don’t really know what they are talking about and are obviously of low intelligence and immature about strokes whatever she claimed to be, get to you. They are certainly not worth another moments thought from you. Just remember you are amongst friends here and have all our support. I had a hospital visit to the awful hospital where I live as my eyes are still not good following my stroke. I saw an opthalmologist on May 12th to see what was wrong. I explained I’d had an haemorragic stroke in 2024. He asked me what made me think I’d had a stroke!!?? My reply was ask the stroke unit where I spent 2 months and the rehab centre and maybe my stroke consultant. What an idiot. I had a brain scan on the 21st May still no further appointment or follow up. Keep strong and carry on with life as you wish. They really are not worth thinking about. Look after yourself and be proud of who you are. :blush:. Take care

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This is true. The last time I was there, I had a good discussion with a chap who had Tourette syndrome, he was sitting on his own, so we just started chatting. He was coming out with some crackers, but I didn’t feel the need to disparage or sneer at his condition.

Exactly. This is exactly the way this woman entered the conversation. It was immediately argumentative. Suddenly, one finds oneself on the back foot as if on trial.

Most certainly. However, threatening violence is a sign that perhaps he is one of these people who instead of trying to fix something, finds it easier to break it. For some people this language is almost automatic. If your dog poos on my lawn I’ll kick it, if you touch my food I’ll smack you in the face, if you take my parking space I’ll slash your tyres, if you call me rude again I’ll smash you in the teeth and so on. I witness this kind of reaction every day, on the news, on the internet, in real life. My stance is always this; the threat is unpleasant but the consequence of the threat is the law. And I just ignored him, didn’t bite back. Didn’t react, just waited to see if he was willingly to risk the consequences.

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And that my friend, was absolutely the right thing to do.
Well done!

:pray:

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It all happened so quickly, but in hindsight I seem to recall her saying to me, apart from the obvious stick, I don’t think you’ve had a stroke. I may have said to her something along the lines of well, I don’t think you are a neurologist. Or something to that effect, it may have well been a retort like that that got her husband’s goat up. Professionals don’t like to have their professionalism questioned but are quite happy to question everyone else.

They will probably have forgotten about it all now, but the problem I have post stroke is obsessive thoughts and anxiety, and I really have to work hard to dissipate them. Thank goodness I have therapy tomorrow, it will be the first thing on the agenda. :laughing:

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Nice one. That is going into my pocket book of retorts.

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