To fake having a disease, just because what I do actually suffer from is unheard of-even with doctors?

[XoticEngram]

I suffer from a sleep disorder which in itself isn't/shouldn't be a big deal. In the grand scheme of things compared to cancer, or some progressively deteriorating mental condition I am lucky.
However it does limit the work that I can do. Basically it is genetically impossible for me to fall asleep before 2-3 am so if I have to wake at 7am for a job that starts at 9am then its unworkable. If I was in a big city, this would not be a big deal but I live in Cornwall-a place with much reduced work opportunities.

As a consequence of this condition I have been claiming job seekers allowance for a long time. I have repeatedly tried to talk to Drs about it but in this country GPs are useless for sleep conditions and do little other than dole out platitudes about good sleep hygiene.

Now my job seeker advisor-who knows that I suffer from this condition- has rail-roaded me onto a 6 month work program placement which demands that I get up at 7am at the very latest.

Basically I have been put into a situation where I will have to endure 6 months of 360 degree hell with no respite whatsoever. I do not compensate any sleep I miss in the same way as other people. Being exhausted does not mean I fall asleep earlier.

Best case scenario- people on this work placement think I am belligerent and have an attitude problem.
More likely scenario- I incur damage to my health (in the form of excema like rashes-to start with) and succumb to alcoholism (something I have abstained from for over a year) and become a danger to other workers due to concentration problems. And end up receiving benefit sanctions on account of failing to meet the requirements of this program.

If I lived in USA and had easy access to a fire arm I might just turn my self off and experience Peace Perfect Peace.

Ive made an appointment with the Dr. It is unlikely that will be able to help me with what I actually suffer from so I am thinking strategically it might be better to say I am suffering from depression/psychosis in order to try and get myself on the sick. If I am forced to do this program this will probably be the result anyway as constant cortisol has a negative effect on any ones brain.

Please by aware-I WANT TO DO THIS PROGRAM. But the people who run it are unable/unwilling to work with me, refusing to acknowledge that the problems that cause unemployment are intrinsically complicated preferring to insist that a 'one size fits all' approach can be used for everyone. I think one of the people who runs it have an RAF feel about them, so they are probably full of militaristic virtue and belief in a regimented application of a hegemonic schedule in the curing of all of societies evils.
BTW- the name of my disease is Delayed Sleep Phase Syndrome. I doubt you've heard of it, but its a real thing

PS I'll not judge OP on the nature of her sleeping habits

I worked with a lad who had narcolepsy :
once you have seen that kick in as they walk across the office while carrying a cup of coffee
you never ever doubt how weird the human body can be

but
OP
there are jobs that cry out for people alert late at night : milkmen were self selecting after all
pick one of those jobs

perhaps in actuality things are a tad more complicated than I can put into these posts.

Indeed, which is why the OP needs a proper full assessment from a doctor, not google!

FWIW I have, as part of my 'reasonable adjustments' due to my disability, a guarantee that I don't have to start work any earlier than 9.30 (most shifts start an hour earlier) - but that's because I have a recognised official diagnosis of a condition that makes getting up incredibly difficult. Imagine if I'd just said "I find it hard to get up, can I start late?" :o

As an aside, I usually get really annoyed with the 'well, move to a different area then' type comments that often crop up on MN - as if it's that simple. BUT in this case OP I really think that long term you should look at moving even to somewhere just a little more urban in your area. With your mum I mean. Not just because of employment but also generally, life sounds very difficult for you at the moment and being cut off by lack of car and poor public transport is very isolating and makes things very hard indeed (I say that as a non-driver, really not judging).

Today 00:28 fuzzpig
If you don't mind me asking, in regards to your reasonable adjustments were you already in a job?

I think its obvious from the way the OP is posting that things are more complicated than she is able to explain. But facts are facts and if she doesn't have a diagnosis from a doctor of something that will exclude her on grounds of disability from the work placement, she is going to be in big trouble. The OP doesn't come across as helping herself, or wanting to access the help out there, in fact by self-medicating over the internet, she is possibly making it worse. In fact, she comes across as very much wanting to be diagnosed with something. Job centre staff and GPs are used to dealing with this and will no doubt have their own views.

OP, you might actually end up enjoying the work placement. Or it might help you get into a routine. I found the best thing for my appalling sleep patterns is to be forced into a routine. I can literally stay up all night and of course its much more fun for me to do so, looking at interesting things on the internet, than going to bed because I have to get up at a certain time in the morning. I've had terrible insomnia since I was a child. I can go through phases where I will get one night with no sleep whatsoever, possibly two in a row, then several nights of 3 - 4 hours. But its much worse if know I don't have to get up in the morning and can be undisciplined with my sleep habits. I can imagine that there will be gaming types who do similar to me ie staying up and not bothering going to bed and basically training their bodies into poor sleep habits, who would experience similar problems, exacerbated by not having a job to force a routine.

It is surprising what people who are out of the way of work or who feel anxious about it will use as a reason not to work - I have a friend who claims she cannot work because she has a dog which doesn't like to be left alone in the house. She too is trying very hard to make a number of potential conditions into something serious enough to avoid work, but then constantly complains about being poor. I find that pretty shocking as she is well qualified and able to work but she will put on the prima donna act when it comes down to actually turning up each day. Whether that is a disability or not is something for the GP and hers thinks no. Of course, most of us would rather not get up and go to work in the mornings, its much nicer not to, especially if you hate your job.

There must be very few people who don't suffer from insomnia at some time in their lives, and most of them hold down jobs. In fact, I often wonder if very many employees outside their twenties and thirties are in perfect, robust health without any form of any medical condition at all.

Imo/e there are two reasons for "its much too complicated to explain"...

One is actual complicated conditions, my EDS is this to the random layperson, as I would say is DSPS. Its not that you dont want people to know, so much as you get sick of explaining yourself over and over again, with people not understanding the terms used to describe it, which then means you have to explain them too, and it takes ages, they still dont really understand, and you just get bored of it.

The second is special-snowflake-ism

Yes I was in a job already although I was given the impression that you can ask when you apply for/start a new job as well - because it's a documented, diagnosed disability.

(Unfortunately my illness has now progressed so that even the reasonable adjustments are no longer enough, and any further adjustments I now need have been deemed 'unreasonable' as they would mean me no longer fulfilling my job role - so I will likely have to leave soon)

I wasn't implying that OP will be able to get a job with adjustments BTW - just realised I may have been unclear - was just giving another example of how you can only reasonably expect allowances with an official diagnosis.

Sorry, haven't read the whole thread, but two members of my family also have this and they both work in jobs where they can always do back shift or night shift, which works well for them. They live in big cities where those kinds of jobs are more readily available than in smaller places. But yes, an official diagnosis, though hard to come by, is really the only practical way to get reasonable adjustments - and treatment such as melatonin.

I have a friend who claims she cannot work because she has a dog which doesn't like to be left alone in the house. She too is trying very hard to make a number of potential conditions into something serious enough to avoid work, but then constantly complains about being poor. I find that pretty shocking as she is well qualified and able to work

Let's look at what you've described here. A well-qualified woman, who is used to a better lifestyle, is avoiding work although she hates to be poor. Is this rational? I'd say not. Is she willing to sacrifice her everyday comforts for the sake of her nervous dog? Possibly, but that isn't rational either.

There is something wrong with her. I don't know what and neither do you. But it's clearly deeper and more worrisome than being 'workshy'. Because it's damaging her life and making her act irrationally.

Garrick There is something wrong with her. I don't know what and neither do you. But it's clearly deeper and more worrisome than being 'workshy'. Because it's damaging her life and making her act irrationally.

I don't know Garrick. Her whole life is a story of starting things and then dropping out. She doesn't avoid work, she starts jobs and courses then drops out within a matter of weeks. No diagnoses of any conditions.

So something is wrong with her, Scremers - but neither she nor her doctor are looking honestly at the whole picture. It takes a gifted & experienced practitioner to discern the cause behind a slew of minor complaints. A lot of patients are 'diagnosed' with health anxiety without any attempt to treat it, while treatment might eventually uncover the underlying problem(s).

She might have some combination of lack of confidence/self-worth; a health issue she finds embarrassing; agoraphobia; social anxiety; a neurological problem; epilepsy; depression; ME/CFS, or any number of other things. Unfortunately, our readiness to label people useless or lazy tends to afflict our doctors and ourselves as well as people around us.

I'm not suggesting there's anything you could do to improve her life - only pointing out that what you've described is a woman with a serious problem, who perhaps merits more compassion than judgement. It can be exasperating to observe, though!

I have looked-constantly-for afternoon/evening jobs....but this is Cornwall.

I am sure this has already been pointed out a thousand times, but Cornwall must be absolutely FULL of hospitality industry jobs, shops, restaurants, bars, hotels, theme parks etc where it is perfectly possible to start work at 11am or later, and work into the night.

But surely if you are capable of sleeping for a relatively normal 6 to 8 hours in a row (which you are if you fall asleep at 2-3am and wake up at 10am for example) then you just need to work on a programme of readjustment. It's not that you can't sleep, but that you can't fall asleep earlier on in the evening.

But then you never will, all the while you keep waking up at 10 or 11 am.

maybe you should grit your teeth and toughen up

Rare illnesses are imo stress related sometimes, and a sort of distraction from what is causing your stress. Obviously if you believe you have a very rare disease, frustratingly not recognised by your GP, it will be an even bigger distraction than just something unpleasant but common. And the unpleasant but common will have a treatment programme, a rare unrecognised one will go on indefinitely.

So I wonder if you are stressed due to being 'trapped' in Cornwall, somewhere you admit you don't want to be, by the need to have your DM nearby to help with DD and by the need of your DM's health issues (or whatever they are you weren't specific) that require you to be on hand to aid her.

So basically you are trapped indefinitely. That would make many people very stressed.

That is all depressingly true, Scooby. There's also the irritating consequence of living in a rapidly-changing but overconfident medical environment - practitioners are often unwilling, for various reasons, to explore underlying conditions. All my very real, very common physical illnesses (PCOS, ME and hypothyroidism) were dismissed as whingeing about nothing, alcoholism and depression. I do actually have depression, but that's not surprising given the facts of my health. For six years I was told the depression caused the symptoms, rather than the other way round.

I did internet self-diagnosis for the thyroid and bullied my GP into doing a few simple blood tests. The other two conditions were randomly diagnosed by specialists I was seeing for something else.

Some friends of mine have suffered far worse - including my best friend, who was treated for anxiety and heart disease before being diagnosed with the brain tumour that killed her :(

Living with crappy health does cause stress, and stress does cause nasty physical symptoms as you say. It's a vicious cycle and all too easy to get trapped in self-blame and futile efforts to 'live a healthy lifestyle'. I'm afraid the only sane way to deal with it is to make as full an observation as you can of all the symptoms, do a bit of internet research (not too much!) and lay it all out for your GP. Then go through various diagnostic & treatment programmes, some of which will help, and which may eventually lead to appropriate answers.

Unfortunately a lot of life-limiting conditions have no cure; all we can do is learn how to manage things. It's an imperfect world.

fuzzpig i'm sorry to hear that x

But surely if you are capable of sleeping for a relatively normal 6 to 8 hours in a row (which you are if you fall asleep at 2-3am and wake up at 10am for example) then you just need to work on a programme of readjustment

DSPD doesn't work like that. You can't just 'readjust' without constant mucking about with medication and light.

For someone like me, who can 99% of the time just sleep when I'm tired - and go to bed early if I need to be up early, I found it extremely hard to understand DSPS and its impact.

I can't understand why you're buying modafinil on the internet which is said to cause wakefulness but complain that Melatonin isn't available on the NHS. I have insomnia and buy Melatonin to take occasionally. Mine comes from France through Amazon.

Thank you Kali

"DSPD doesn't work like that. You can't just 'readjust' without constant mucking about with medication and light."

First of all, OP doesn't really know that she has DSPD. She has never been properly diagnosed.

Second, she cannot possibly adjust if she doesn't wake up early in the morning, with or without an actual sleep disorder. If you wake up at 10-11 AM every morning, of course you will not be able to fall asleep at 11 PM.

My tend to stay up late - my body just doesn't want to sleep before 1-2 AM, and that is exactly what I did all through this past summer, waking up no earlier than 9 AM. Come September, I had to start waking up at 7 AM for the school run and yet I still couldn't sleep until 2 AM. It took three weeks of exhaustion and 5-hour sleep per night to start sleeping a bit earlier every night and get to where I am now (00:30 sleep, 7:00 wake-up).

So, yes, I do understand the problem. And no, I don't see OP doing anything (like, waking up in the morning?) to adjust her sleep schedule.

I bet OP's "condition" would start showing definite improvement if her mum were to stop taking care of her young DD in the mornings. There is nothing like a bit of sleep deprivation to start sleeping earlier, ime.

Exactly the same here, Cote; school holiday time I rarely sleep before 1-2am, which is my natural sleep slot, waking at 8-9am. When DD2 goes back to school, I just have to suck it up and get on with it, and long for the weekends.

OP hadn't been diagnosed with anything; OP is self medicating, yet isn't buying the most obvious, and reliable medication; OP has cancelled sleep clinic; OP considers herself to not be what employers want.

I don't think OP actually has any intention of working at all. It's just excuse after excuse.

Oh dear, I think I may be the dog woman so I understand that there are a million barriers one can put up as reasons for not being able to work.

I don't know exactly what the OP's problems are, but I can't imagine that the sleep delay is the whole story. As 15 pages of people have pointed out, ther are thousands of jobs, even in Cornwall, that don't start at 9am, and there are many thousands of people who suffer from insomnia. I'd go as far as saying I've never met a soul who hadn't suffered from lack of sleep at some point. My mother did that thing where you drop off straightaway, then wake up an hour later and are wide awake till it's time to get up. She just had to zombie through the days and catch up when she could.

OP needs one of this sleep monitors that you clip on to you. It wakes you up when you should wake up and trains you in a different sleep pattern. I would be incapable of sleeping if my DCs were up. I am the lightest sleeper in the world, yes I can hear a pin drop.

The OP honestly needs to sleep train herself.

You say in your original post that it is impossible for you to sleep before 2 or 3am. What if you flew to a country in a different time zone that accommodated this? You would be able to sleep then. I think you are fixating on light/dark/sleep/not sleep/not getting enough sleep etc. If you were to have very little sleep for a number of nights, your body would eventually 'reset' and you would sleep.

hat if you flew to a country in a different time zone that accommodated this?

BIL freaking LOVES going on holiday in a time zone that suits his sleep phase! It's so funny, seeing him bouncing around in the mornings and getting tired at a normal time at night ;-)

An item came up in my feed, and I thought of this thread: Women susceptible to genetic insomnia.

Some places though sY that you can work certain hours, but then change them or want you to be availae for others.i had this problem, my hours were constantly changed.
I really struggled to work evenings due to medication ( even though i struggle sleeping im best suited to mornings as by past 4 or 5 i don't make any sense).
My work always changed my hours so i was working till 6 or 7. Xmas was worse.