Author Topic: Long Covid & Universal Credit  (Read 1132 times)

ditchdwellers

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Re: Long Covid & Universal Credit
« Reply #15 on: 12 Apr 2021 11:12AM »
Quite, Fiz.
Although that's not to say that there isn't a link between physical health and mental health, but so often doctors overlook one for the sake of the other. If that makes sense. 

When I first visited my GP when I suspected a sleep disorder, I was really nervous telling him I was hallucinations. He couldn't have been nicer. He asked me if I thought I needed to see a psychiatrist and I said no. After describing all my symptoms he agreed that it was probably a sleep issue and immediately referred me to a brilliant sleep clinic, where sure enough I was diagnosed with two sleep disorders! 
I miss that GP now I've moved. I've still not met my new GP face to face due to lockdown but she's been very kind and helpful on the phone.

Sunny Clouds

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Re: Long Covid & Universal Credit
« Reply #16 on: 19 Apr 2021 11:44AM »
Belatedly adding some thoughts...

I believe that there are some key, overlapping problems with 'dismissing' physical health problems as mental (and I'm sure there are others that aren't immediately coming to mind)...

1. Box-ticking.  The state of modern medicine is such that everything and everyone has to fit into neat diagnostic boxes.  Woe betide you if you don't.

2. Can't have two conditions together (unless the textbook says you can). There are established conventions as to which conditions are considered ones you could have together and ones you couldn't.  As I discovered to my cost, if you have a bipolar label, you can't possibly also have a perimenopausal PMT problem, and you can't possibly have postviral fatigue.  No, it was just 'depression'. Doubtless if I'd had a 'borderline' label, I'd have been 'attention-seeking'.  If I'd had a schizophrenia label, I'd have been 'delusional'.  That principle can also apply to two or more physical conditions or a mixture of physical and mental conditions.

3. Ridiculous divide between mental and physical in healthcare.  I'm not saying there are no exceptions, but for the most part it's separated.  Delusional?  Unless you've got a terribly high, sweat-dripping fever, you're psychotic. What, it could be from an infection without a fever or from a non-obvious head-injury, or from having unknowingly consumed a street drug or the wrong sort of mushroom or whatever?  Nah.  

4. Medicine has history going back centuries of not wanting to accept challenges to conventional wisdom.  Think of Ignaz Semmelweis, the 19th century doctor who ended up in an asylum, being so mad as to have come up with the utterly nonsensical notion that doctors should wash their hands and that failure to do so could spread disease.  Or think of Marshall and Warren, who in the 1980s only got other doctors to accept that stomach ulcers could be caused by a bacterial infection, by infecting themselves.

5. Social stereotypes.  Not nice, but they're there.  Your gender, your ethnicity, your age, your IQ, your education, your social class, your money etc. all contribute to what labels do or don't get stuck on you.

6. Who's got the biggest influence.  Drug companies + the Marsh & Warren thing.  It's been half a century or so since someone first started exploring possible links between schizophrenia and cats.  No, seriously.  The theory is that a bacterium you can get from cats could affect the brain as it develops.  So the arguments have raged.  No clear causation, but still explorations of a theory of possible links between infection and mental disorders.  I know that 20 or so years ago, links between infection and depression were being explored. 

But the drug companies wouldn't like that.  Well, not until they ran out of ideas for new 'antidepressants' and 'antipsychotics' and wondered whether they could re-purpose anti-inflammatory drugs.  Of course, it would be entirely coincidental that a category of mood-stabilisers (bipolar drugs) they'd been using for years has anti-inflammatory effects.  So obviously, they couldn't have thought of exploring the link between depression and inflammation before now whilst still pushing hard the view that it's irrelevant as opposed to less marketable, could they? 

Which is another facet of all the rest anyway.  Two people with the same label must have the same causes, the same symptoms, the same treatments etc.

Conclusion

I think the best bet we've got for any of this with getting help with conditions is where there's a group with the right influence on the right people.  Pot-luck really.  Or maybe there might be a way of persuading the politicians that taking long-covid (and a range of other conditions) seriously would be cost-effective.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: Long Covid & Universal Credit
« Reply #17 on: 19 Apr 2021 04:47PM »
Ditchdwellers - re. EDS.

It's not a condition I've had occasion to read much about, but I was incredibly saddened the other day to read a personal story by a woman who'd been misdiagnosed with an eating disorder and kept in psychiatric units for a long time, force-fed, in terrible pain.   Apparently it took years for someone to do the tests necessary to discover that her gut wasn't working properly and she had EDS.

As it happens, whilst taking an interest in long covid, then going sideways onto a whole range of connected issues relating to ME/CFS, immune problems, inflammatory problems, atopy, mental illness etc. I'd encountered mentions of EDS.  I'd never taken on board before how much it's one of those conditions that doesn't just take years to get diagnosed but that leads to lots of misdiagnosis and what is, because of that misdiagnosis, not just inappropriate treatment, but cruel treatment.

Big hugs to all here with conditions that haven't been properly diagnosed and haven't been appropriately treated.

:big_hugs:
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: Long Covid & Universal Credit
« Reply #18 on: 19 Apr 2021 06:24PM »
My first knowledge of EDS was the Coronation Street character with it. I looked it up at the time to explore what she was able to do or not. I have no idea whether the actress had EDS herself. Now I know someone whose daughter has a diagnosis of EDS. Apparently diagnosed by blood test but from what I have read hypermobile EDS isn't diagnosed by blood tests? She's attending a school for children with language problems so possibly she has more than one disability. Like most of us I think, and that makes accessing help harder.

Sunny Clouds

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Re: Long Covid & Universal Credit
« Reply #19 on: 19 Apr 2021 07:55PM »
Ah, yes, the 'more than one disability' thing.  Aargh.

It gets really fun with DWP form-filling, doesn't it?  As for alternating conditions, relapsing-remitting conditions, fluctuating conditions etc...oh dear.

I get horrible side-effects from some medications.  Increase the medications, physical disability increases, decrease the medications, mental disability increases.  Erm, which box to tick?

Mind you, things people have posted online have been helpful, and this thread has really helped me with a particular issue - I'm always terrified of not being believed in relation to health and disability.  It goes back to childhood.  But when we discuss conditions like this, at least I don't feel alone with these invisible and/or disbelieved conditions.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: Long Covid & Universal Credit
« Reply #20 on: 20 Apr 2021 07:33AM »
Definitely never alone. Especially not here. 

I've struggled with the adrenal insufficiency and the extreme fatigue it causes. People don't see it or understand it and part of me is embarrassed by how little I am able to do. To an extent my spine issues are easier to handle because it's structurally damaged though the pain isn't evidenced so people just have to believe me.

Part of me is looking forward to being old because people won't then expect me to do things and will see the problem!

KizzyKazaer

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Re: Long Covid & Universal Credit
« Reply #21 on: 20 Apr 2021 04:19PM »
Not alone and not disbelieved, Sunny - your post #16 was spot on.  I have more than one mental health condition and the psychiatric in-patient system in the 1980s just couldn't comprehend or even consider that, so was labelled at one time as having a 'behavioural disorder' - and punished accordingly on 'bad days', sometimes just for showing strong emotion, and not always getting verbally or physically 'challenging', either.  Though inevitably my sheer frustration at being treated as such a worthless individual would eventually spill over into outbursts of rage where I would attack things rather than people....Must stop there or I'll be writing a novella about it :f_whistle:

>edited to add
« Last Edit: 20 Apr 2021 04:21PM by KizzyKazaer »