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

I have a chronic illness (lupus) that means I need to sleep or my symptoms are worse (fatigue and muscle pain). I have a child with a chronic illness that means I need to get up in the night every night at least once.

I work 35 hours per week on 4 hours sleep per night, get up every morning when my body is screaming for more sleep, raise three children, and do all the house related stuff like shopping, cooking, laundry, paying bills, admin etc.

You sound very lazy OP. Either get a proper diagnosis then an afternoon/evening job or admit that you're just wanting to be paid benefits to stay in bed for no real reason! Surely if you have a child you need to get up at around 7am anyway or is someone else parenting them for you too?

senpai- in USA they are better with sleep issues-assuming you have access to a dr

Well, if you have the money to pay for top of the line insurance you can get diagnosed with anything you want to. Of course, that means you probably are making a pretty good salary and don't need any assistance... and if you're doing that well, you probably don't have an issue.

But if you're on government insurance, good luck. They don't cover specialists unless you are referred. More likely than not, you'd have to do a sleep study and they'd just give you a sleep apnea machine. But honestly... Our own vets can't get disability pay for serious disabilities. They have missing limbs and have to fight for it. PTSD is a coin toss if they get anything besides some free pills. You really think you would get anywhere because "you can't sleep until 2am?", which covers about 100% of all college students?

The diagnostic and prescribing system in the USA is drastically different to ours. You can get diagnosed with anything, with drugs given out like sweeties, if your insurance is good. If it's not, you're screwed. I run clinical trials globally and I'm shocked by it sometimes.

Anyway.

Op, you need a sleep clinic referral.

I've never, ever slept through the night. I've never had more than an hour or two in a row before I wake up. At my worst I'm awake 2-3 days in a row, more typically I catnap for 30-90 mins, wake for a while and repeat. Once, after a business trip to Australia I was so tired I slept for five hours solid. I felt like a new woman when I woke up! I work 40-60 hours a week in a demanding job - it is really hard a lot of the time but I know I'm just a crap sleeper. As an adult with confirmed DSPD, you'd be justified in working a later pattern but you'd not be justified in not working at all.

Sleep is very individual - you sound like an extreme 'owl' at the very least, but no one can diagnose DSPD without an actual assessment. They are actually really interesting (at least I found it so.) be aware that there's little clinically to distinguish DSPD from someone who is just used to going to bed late - the assessment will rule out other physical causes of poor sleep rather than confirm DSPD.

Lack of sleep is utterly crippling, but you cannot proceed until you have a concrete diagnosis. Once you have the diagnosis you can look at meds with your doc. Then you need to address the lifestyle factors which contribute hugely to poor sleep.

And I'll say it again - Stop taking modanifil (how much are you taking and how often, by the way?)

Please don't walk in to the Doctor's with this and begin with "I have xxx... You've probably never heard of it" attitude. It IS belligerent.

Other people here have been diagnosed. Yeah yeah I know, you live in a place you seem to hate so everything is SO much harder for you than for other people.

If you want people to take you seriously, IE the ones paying your JSA, you will have to prove you have this condition and starting with your "Everything is so much better in the US" line is not going to make your GP warm to you.

The OP does not meet the diagnostic criteria for this self diagnosed condition. And if you had went to the sleep clinic, the recordings could be looked at by someone who does know more about this disorder.

Get a job.

What are the diagnostic criteria, cleaty?

One of them is that if you are allowed to sleep when you want, you are no longer tired. OP is not working and can sleep when they like, but talks about being too tired to pursue a diagnosis.

Have waded through the whole thread, and a few things really stand out.

You are self diagnosed. Step away from Dr Google.

You are still 'too tired to function', despite not working, and being able to sleep when, and for as long as you need. Doesn't fit your 'diagnosis' at all.

You've cancelled the sleep clinic appointments.

You are not listening to posters advice about finding a job.

You are not listening to the, frankly excellent, advice about not self medicating with pills bought over the internet. You are buying, and self administering, inappropriate medication, yet at the same time stating that melatonin is unavailable to you without prescription.

You are very negative towards, or simply ignoring, any suggestions of help.

You sound very grandiose, and superior. As others have pointed out, you sound like you are in a manic phase.

What comes across overwhelmingly is that you don't actually want to work, and have conveniently decided you have this condition.

I do feel for you as I have had insomnia for many years in the past (sleep like a log now). I think you could argue the case for depression (due to exhaustion) and get signed off for that. It is hard to believe they would force you to do this placement given your circumstances so a wee white lie might be in order and lets face it not sleeping DOES lead to depression about the situation. I'm sure you can burst into tears on cue (misery does this to us) so try that tack with your GP. Good luck!

if you pretend to have a 'more recognisable' condition to get help, you are taking a place on a list that could have gone to someone in genuine need.

good luck with being tired. it sucks, doesn't it? add depression, anxiety, alcoholism (although I'm sober and not threatening to drink again if I don't get my way) and a personality disorder and see how you like that.

Flossie no the op doesn't sound lazy, lupus can be variable many people with the condition could not do what you do. Your attitude is partly to blame for why people get refused ESA.

It is hard to believe they would force you to do this placement given your circumstances

If she gets a sick note she'll be exempt for a short period. If her ESA claim is turned down she'll have to do it and will be sanctioned if she doesn't turn up and on time.
As said before, she would be best advised to get a proper diagnosis and be more proactive in looking for work covering the hours she says she needs.

No, the idea that it is common and easy to fake (ie, exactly what the op suggested) is why people get refused ESA.

*common and easy to fake ILLNESS

She totally does sound lazy.
I suffer from insomnia. I don't have the added luxury of being able to sleep longer after I do fall asleep so most days I struggle from exhaustion. I still manage to hold down a job.

The condition OP claims she has means she falls asleep later than everyone else, but as a result she sleeps later, so she is no more tired than anyone else.
She is self diagnosed, refuses to speak to gp and refuses to look for jobs that would be suitable for her. Instead she wants to sit on benefits.
Well fine, if she wants to do that that is her choice, but at least have the balls to admit it.

It isn't incurable and changing sleep habits helps. Would seem this course might do her some good and the tiredness will help her change her sleeping habits and go to sleep earlier.

I think it's unfair to call her lazy too!
So some people can survive on a few hours sleep, others can not.
If i only have a few i am a complete wreck. Even if i get an hour later in the day i'm still a state.
Everyone is different.

Do not make up an illness, princess. You'll just look silly. boy who cried wolf springs to mind

Just talk to your Dr and If you really don't like what they have to say (and genuinely believe that there is genuinely something wrong) try to get a second, third, fourth opinion... It isn't that difficult really.

(Also, and I might be wrong but I can't say that I've ever heard of a genetic condition that makes you fall asleep at 2/3am...)

The thing that really really jumped out at me more than your sleep "worries" - is your possible alcoholism and or thinking that suicide is an option (something you should also talk to your Dr about) if you can't get what you want work wise... Which is highly unlikely in this climate. You really ought to take what you can get. 7am isn't that early either. There is lots of public transport at that time. Lots of shops open. I know a lady who does have cancer (breast cancer) and is currently going through chemo and starts work at that time....

It sounds as though... And I'm not a medical profession... You need to retrain your sleep pattern. Like a baby. Get black out blinds, hot bath, read and just wind down earlier. You say it can't be done but have you really tried?

It can be really hard sometimes to get doctors to listen but you really need to do it. Fight as hard as you can. It's ok that you are too tired to do it - let them see you cry with the utter relentless exhaustion in their office.

It needs to be done. You can't expect help and special considerations without a diagnosis. I worked out before being diagnosed that I had ME and POTS so the diagnoses were not a surprise for me when I finally had the assessment, but I still had the assessment. Can you imagine if I'd applied for benefits saying that I'd just worked out I had it?

I also strongly suspect I am on the autistic spectrum, and have a lot of difficulties due to the symptoms that go along with that. But I have never used this suspicion in an official sense because I have no proof. I did give up for a while trying to get referred because of my physical health issues, but then I found another way to get referred and went back to the GP about it. I have now got an appointment with an expert and only then will I mention the diagnosis - if I get it of course, she may say it's something different - when I'm trying to get help. Until then, if it comes up or is relevant to anything official, I'll say 'I have problems with .....' or 'I am awaiting assessment for an ASC' because THAT is the truth.

You can get melatonin on the NHS. You can't diagnose yourself with anything using the Internet. No-one will take that seriously. If you pretend to fake psychosis or serious depression when you visit your GP you should be referred to MH services and they will see through you very quickly.

I know many people diagnosed with delayed sleep phase syndrome who still have to get up in the morning. I'm not saying it's easy or has consequences for their health but they do it. Melatonin can help a great deal.

Out of the many people I know with DSPS, not one has ever been considered eligible for ESA.

You're going to have to attend this course and have a tough time of it. I'm sorry if it sounds harsh but it is the reality. Continue to look for work with hours that will suit you better.

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

Well that's very convenient. Just like everything else.

No one is going to believe you without a diagnosis OP. Even I don't believe you based on what you have written here, and I am normally a compassionate person who understands about MH issues, being bipolar myself.

Get a diagnosis or get over yourself. Stop making excuses.

I hadn't heard of this condition, but on the Cleveland Clinic website, it appears that the treatment is montly behavior modification. Can't you just buy Melatonin? Here in the US it's a supplement sold OTC with the vitamins.

As I read and think more on this issue, I'm getting increasingly sceptical about OP's claim that she cannot possibly fall asleep before 2-3 AM.

I am one of those people who can't nap in the daytime at all and can't fall asleep when it's light outside, even if I'm severely sleep-deprived. So, I do understand the body not wanting to sleep at certain times. HOWEVER, how can your body possibly know the difference between 1 AM, 2 AM, and 3 AM? There is no light outside, you are presumably not doing a strenuous activity past midnight every night at the same time.

What would happen if you went to Barbados, 5 hours behind the UK? You would get sleepy by 10 PM and then presumably would wake up before 7 AM.

I am someone who can't function without sleep. But when I had a bout of insomnia lasting several months I learned to function on four or five hours a day. It was miserable and draining but I kept working full time and volunteering two evenings a week as well. So yes, some people do need more sleep than others. But you can adjust to an extent if you have to. Besides, as various previous posters have pointed out, the condition OP says she has means that she sleeps at 2am but as long as she doesn't have to get up early and can sleep til Her body wakes her up, she won't be any more tired than an average person who sleeps from 10pm til early morning.

I don't doubt the existence of this condition. Or that the OP has sleep issues. I doubt whether she has this precise condition given that her diagnosis comes from the Internet and her treatment is self prescribed and doing more harm than good.

Someone who can work but looks for excuses not to is someone who is lazy. OP can work, just not early mornings. That's fine, many jobs don't require early starts. OP isn't interested in those

Cote - you can be sceptical about the OPs claim to have the disorder but if you research the disorder you will see that it features people who can't fall asleep before midnight and more commonly, not until the early hours of the morning.

If you'd like to internet 'research' circadian rhythms you'll see its a diverse and fascinating subject. It's how your body 'knows' time and sleep cycles.