Something that seems to come up alot across many of our communities is how do you go about applying for disability or assistance with a chronic condition. Given we're a global community can any of you provide links and advice on how to do this in your own countries, or if its state specific, states?
Also any tips on how you can hook in to social service support networks?
Any information greatly appreciated.
Hi, my info is specifically UK-based.
There is no such "disability benefit" in the UK for GPN sufferers as currently it is not classed as a disability (I know, right?!). However, you CAN go down the road of registering as disabled based upon the severity of your symptoms but this HAS to be done by your GP and not as an individual. If successful, it will give you the right to then apply for disability benefits but does NOT mean you are disabled, if that makes any sense!!
If like me, you end up either leaving a job or being made reduntant/fired because of your illness, temporary support is available from the State in the form of Employment and Support Allowance (ESA) which is a bit like Jobseekers Allowance (JSA) only slightly higher per week. HOWEVER note with this (as I found out the hard way!), that even though WE know that GPN is a legitimate illness and even though your GP will have to sign paperwork to state that you're being treated for GPN, the powers-that-be are trying to clamp down on people claiming ESA and after 12 weeks on ESA after I had to leave a full time teaching position, I was hauled in front of an independent (NON MEDICAL!!!!!!!) committee to assess whether I was fit for work or not. Of course they decided I was, because I wasn't disabled and could get myself out of bed every day and the ESA was stopped. I was then forced onto JSA meaning I had to attend local Jobseeker Centres every week where I would have to explain why it was I hadn't found a job even though the reason I'd left a job was because of the illness. And if you miss a week (say for example you have a massive pain attack and can't go), they stop your payments and treat you like a con-artist.
BE CAREFUL with claiming benefits in the UK based on GPN symptoms - being that it's an invisible illness you may be treated like it doesn't exist, just prepare yourself for this and potentially for a fight! Sorry to be negative but if you're in the UK you'll probably already know the current situation with benefits.
This Department of Human Services Payment finder link helps you identify what if any payments you may be entitled to:
Start at the top and move the bar until your correct age appears, then pick the most appropriate icon for your current situation in each section on the page. At the bottom of the page select the large , then select the large button that appears at the bottom "you have xx possible payments read more".
It then provides you with more detail on each of your potential payment benefits and give details on how to apply.
Also if you're experiencing financials issues, this site has some great tools and references:
The page has a thick green banner at the top, with two keys links - the first "managing your money" and the last, "tools and resources". These are worth a look even for non Ozzies as they provide some great information.
If anyone in the USA could give some feedback on this topic I would greatly appreciate it. I really don’t want to go this route, but feel that I’m at that point.
I currently have a 4-6 hour a week job with a church that honestly my husband, children, or mother help me with. I just can’t do even that much alone.
I don't know if glossopharyngeal neuralgia itself is a disability, but if you feel it is affecting your life to the point that you cannot work you might be able to approach it form this angle from a doctor.
If this is of any help here for trigeminal neuralgia, it sounds like that is not on official lists but people can still apply if they can prove it interferes with working and have medical history that validates it.
My second advice, personally, would be that if you feel the pain is too much to handle while working, that can be taken psychologically. You may be able to apply for mental illness benefits as in you are under too much stress and depression from pain to work consistently. This is a round about, and somewhat ridiculous approach, but it is possibly feasible.
This evidence would be gathered once again with the help of medical records and possibly seeing a psychiatrist as well as a neurologist. Either way, one of the universal aspects of disability in the USA is the first application is often refused, and if you retry with the help of a disability lawyer your chances of success would greatly improve. The other universal aspect is you definitely cannot achieve this by making a case yourself, you need corroboration from medical community.
I'm sorry I'm not knowledgeable enough about this subject to help more, but I do believe it is possible to achieve, if not directly based on the illness itself qualifying with a more indirect approach based on the impact it has on your ability to function.
If anyone in the USA could give some feedback on this topic I would greatly appreciate it. I really don't want to go this route, but feel that I'm at that point.
I currently have a 4-6 hour a week job with a church that honestly my husband, children, or mother help me with. I just can't do even that much alone.
My latest information for US disability.
Don’t wait to apply! Apply as soon as you become ill, even if you aren’t sure whether it will qualify. They consider the date you apply when determining when you became disabled. One of the things you have to have to qualify for disability is a certain number of work credits earned within a certain number of years for five years before you became disabled. The literature states ten years, but I’ve since learned it’s actually five.
I waited and am no longer considered eligible.