To ask the mask police to please PLEASE stop

[PennyDreadfuI]

Another mask thread but I'm not going to apologise because I'm absolutely at the end of my tether with this sort of thing.

I can't wear a mask because I have trigeminal neuralgia and I've lost count of the stares, comments and filthy looks I've had (and yes, I do wear a lanyard, even though I'm not keen on advertising the fact that I have a hidden health condition). I've heard of people not being allowed on buses, being challenged by staff to explain their reason for exemption and being told they can't enter shops despite being exempt (none of which is legal). I've been told I should wear a visor (I can't, and they're next to useless anyway - Scotland have just banned them unless they're worn with a mask), that I should just stay at home (I can't and neither do government guidelines suggest I should), that I shouldn't use buses (I don't drive and can't walk long distances or cycle because I have inflammatory arthritis) and that I'm selfish (I'm not - if I could wear a mask, I would).

I understand this is a contentious issue but please, can people just think for a minute before they judge or comment? Exemptions are there for a reason - those who are sticklers for The Rules should surely accept and respect this one, too. It's awful that people are too scared to go out for fear of what's essentially discrimination.

The pandemic is bad enough by itself - let's not lose our sense of empathy and humanity, too.

I can't wear a mask because I have trigeminal neuralgia
Ouch, ouch, ouch. Trigeminal neuralgia really is a nasty bastard
But don't give arseholes a second thought op.

[quote MMN123]@Hearhoovesthinkzebras
I didn’t suggest taking early retirement. I said if you are as ill as you are suggesting then you should speak to your employer about being medically retired.

Though am very confused by the thread since then as you don’t seem to have a disabled travel card yet if very disabled surely you would have one? And if very disabled you would be entitled to disability living allowance to support your needs. If you have a blue badge you don’t need to pay for parking or congestion charge in London so no need to get public transport.

So are you disabled? If you are, why aren’t you availing of the support on offer from the state?[/quote]
Because there are specific criteria to disability benefits. You do realise that disability covers a whole range of illnesses and disabilities right?

Look at tfl eligibility criteria for a freedom pass - being blind, deaf, unable to speak, substantial effect on walking (whatever that is), loss of arms, a certain level of learning disability - there are lots of other disabilities outside of this list. How about frequent dislocations, sudden and uncontrollable diarrhoea caused by IBD, syncope caused by dysautonomia? They aren't in that list. When I looked at blue badge criteria the effects I suffer from weren't on there. Similar to PIP - being able to walk 200 metres with a walking frame scores you zero points - who honestly considers a person who needs a walking frame to be not disabled?

I don't know about DLA - is that an in work benefit? I've never claimed any benefits at all. I have no knowledge of how to claim. I've had a charity advise me to think about my worst day and describe everything in those terms which frankly seems like cheating the system so if that's what it takes then I'm not doing it

Several million people are in the extremely vulnerable group, a huge number of us are employed. Many have returned to work with considerably less drama! I’ve seen less hand wringing from previously shielding (hospital based) nurses and teachers. I don’t expect everyone in my office to wear a mask. I take a risk because I love my job and want to be there.

@Haenow

Several million people are in the extremely vulnerable group, a huge number of us are employed. Many have returned to work with considerably less drama! I’ve seen less hand wringing from previously shielding (hospital based) nurses and teachers. I don’t expect everyone in my office to wear a mask. I take a risk because I love my job and want to be there.

Shielding teachers aren't back at work yet and plenty of them.have been on here expressing their fear at what they are going to.be facing (and rightly so).

@Hearhoovesthinkzebras

Um Scottish schools have returned. Teachers have expressed concern but from the health forums I use, they’ve not taken over all discussion or made everything about them and their situation. I’ve seen people in very vulnerable situations (definitely worse than mine) who’ve been proactive and pragmatic. All credit to them. Are they anxious? Definitely but they’ve dealt with it really well.

DLA is the predecessor to PIP; children under 16 can get it, or adults who got DLA as children, and have not as yet been moved over to PIP. Afaik, an adult cannot apply for DLA now?

It is an in work benefit, in that it’s not means tested. DD2 was told by a welfare advisor, while applying for PIP, the difficulties have to be experienced 50% of the time.

Can you apply for Fair Access to Work hearshooves? A friend of mine gets it.

If you have a blue badge, you can apply for exemption from the congestion charge. It costs £10 iirc. It’s not an automatic exemption, unless it’s a Motability car. Also iirc, parking with a blue badge is not straightforward in LB of Camden or Westminster (certainly the West End). You can park in designated disabled spaces, but you cannot just park on double yellow lines, like you can outside London. I also don’t think you could park all day in a disabled bay in the West End? (We drive into London with DD1, either for hospital appointments; or she liked going out in the West End, pre Covid.)

Sorry, Access to Work:

www.scope.org.uk/advice-and-support/access-to-work-grant-scheme?utm_source=Google&utm_medium=CPC&utm_campaign=self_ppc&utm_content=grant_scheme&gclid=Cj0KCQjwvvj5BRDkARIsAGD9vlJYiUY5s5d-r16CuPWLbqtH5s_dNjgccarhQt8CXNv9XqIFHeG3-VoaAlvrEALw_wcB

[quote Haenow]@Hearhoovesthinkzebras

Um Scottish schools have returned. Teachers have expressed concern but from the health forums I use, they’ve not taken over all discussion or made everything about them and their situation. I’ve seen people in very vulnerable situations (definitely worse than mine) who’ve been proactive and pragmatic. All credit to them. Are they anxious? Definitely but they’ve dealt with it really well.[/quote]
And that's good for them isn't it? But we aren't all the same. Lots of people can wear masks without suffering panic attacks - does that mean that people who do get panic attacks aren't as brave, or aren't dealing well with it? Funny how being anxious and therefore unable to wear a mask is acceptable on here and deserves support but being anxious about a life threatening infection that has seen drs advise you to shut yourself away for months makes you the subject of sustained attacks.

So, well done everyone who deals with adversity pragmatically and proactively. Where does that leave everyone else who doesn't cope well, has anxiety Haenow?

@DarkMintChocolate

DLA is the predecessor to PIP; children under 16 can get it, or adults who got DLA as children, and have not as yet been moved over to PIP. Afaik, an adult cannot apply for DLA now?

It is an in work benefit, in that it’s not means tested. DD2 was told by a welfare advisor, while applying for PIP, the difficulties have to be experienced 50% of the time.

Can you apply for Fair Access to Work hearshooves? A friend of mine gets it.

If you have a blue badge, you can apply for exemption from the congestion charge. It costs £10 iirc. It’s not an automatic exemption, unless it’s a Motability car. Also iirc, parking with a blue badge is not straightforward in LB of Camden or Westminster (certainly the West End). You can park in designated disabled spaces, but you cannot just park on double yellow lines, like you can outside London. I also don’t think you could park all day in a disabled bay in the West End? (We drive into London with DD1, either for hospital appointments; or she liked going out in the West End, pre Covid.)

I don't have a blue badge. I've looked at the criteria and I don't qualify.

I've looked at PIP - from answering on line eligibility questions I didn't qualify, based on being able to walk 200 metres with an aid, being able to hear up pasta, washing and dressing myself and being able to plan a journey, but then other people say they claim for disabilities way outside of this criteria so I am so confused? How do you know what to say or how to fill it in? A charity I spoke to told me to think about my worst day when I filled it in but then seems dishonest.

I tried to approach Access to Work before but work decided to go through occupational health instead and their own occupational therapist.

@Hearhoovesthinkzebras

Did you miss the part when I said they were anxious but not derailing every thread/post and making it about them?
You’re not the only shielded person who is navigating public transport and work places. You are one of the few who talks about yourself constantly.
I’ve rarely seen you pass comment on any productive way to live in harmony with others and this includes those who are mask exempt. On the other hand, I’ve seen lots of posts from mask exempt people explaining what they’ve tried and how they’ve worked to protect others e.g. avoiding shops altogether or trying a less effective face covering like a shield.
I accept there are non mask wearers and try to figure out ways to limit the risk to me. That’s my responsibility. I’m not going to make an enemy out of them.

@Hearhoovesthinkzebras
If you suffer from IBD to the extent that it disabled you (ie means you have difficulty using public transport as a result, need accommodation at work) then you may well be eligible for PIP. I’m old I still call it DLA.

See www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/claiming-personal-independence-payments-pip

Join the patient associations for the conditions you have been diagnosed. Many offer advice and support on accessing what you are entitled to receive.

[quote Haenow]@Hearhoovesthinkzebras

Did you miss the part when I said they were anxious but not derailing every thread/post and making it about them?
You’re not the only shielded person who is navigating public transport and work places. You are one of the few who talks about yourself constantly.
I’ve rarely seen you pass comment on any productive way to live in harmony with others and this includes those who are mask exempt. On the other hand, I’ve seen lots of posts from mask exempt people explaining what they’ve tried and how they’ve worked to protect others e.g. avoiding shops altogether or trying a less effective face covering like a shield.
I accept there are non mask wearers and try to figure out ways to limit the risk to me. That’s my responsibility. I’m not going to make an enemy out of them.[/quote]
Strange isn't it because I see very similar threads to this one popping up, same topic and everything, with similar responses on it, just different usernames. Of course those people aren't derailing every thread (or maybe they are, they're just name changing 🤷)

[quote MMN123]@Hearhoovesthinkzebras
If you suffer from IBD to the extent that it disabled you (ie means you have difficulty using public transport as a result, need accommodation at work) then you may well be eligible for PIP. I’m old I still call it DLA.

See www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/claiming-personal-independence-payments-pip

Join the patient associations for the conditions you have been diagnosed. Many offer advice and support on accessing what you are entitled to receive.[/quote]
I am a member of the Crohn's and colitis association, also versus arthritis, the HMSA and Ehlers Danlos Association.

I've done an on line PIP eligibility assessment - I don't fit the criteria. Toileting needs is around ability to get on and off the toilet, change clothes if necessary not about the effects of Crohn's unless you can't take yourself to the toilet. I don't understand how people suggest that getting these benefits is so simple - where are you all seeing criteria that fit Crohn's disease or say joint dislocations or suppressed immune system or reactive hypoglycemia, or dysautonomia? Is there another PIP or something?

Hearhoovesthinkzebras you really need to go to a benefits advisor. They will helpyou claim all you are entitled to. They are free via CAB and some other agencies.

They are able to advise you and assist with the descriptors for the questions and navigate the forms.

I find it shocking that you haven’t been able to access this free help until being told about it here. The websites all make clear that you should seek help for the forms and things.

I think you’ve not advocated well for yourself and You’ve been stubborn and it’s ended up you’ve cut your nose off to spite your face.
Hopefully you will now be able to change that and move froward.

pip and dla are intended to meet excess living costs associated with your disability. It doesn't need to be 24/7 but it does need to seriously impact on your life overall.

I didn't find the process easy but it wasn't horrific and I didn't need to lie. Worth trying. The act of completing the form is sometimes the first time you realise how it fully impacts on your life.

Beforehand you just get used to all of these extra needs and requirements.

Well it might be because you keep saying you are disabled!

I have medical conditions but I’m not disabled.

If you aren’t disabled, then you aren’t disabled.

So were you shielding purely because you take medications that suppress your immune system? No other reason?

www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/claiming-personal-independence-payments-pip

www.facebook.com/TheHMSA/posts/new-pip-bookletnras-have-produced-a-booklet-for-people-with-ra-on-how-to-claim-p/611400962233573/

www.nras.org.uk/data/files/Publications/28106%20PIP%20Brochure%2028pp%20A4%20(Prf2).pdf

@Noneformethanks

Hearhoovesthinkzebras you really need to go to a benefits advisor. They will helpyou claim all you are entitled to. They are free via CAB and some other agencies.

They are able to advise you and assist with the descriptors for the questions and navigate the forms.

I find it shocking that you haven’t been able to access this free help until being told about it here. The websites all make clear that you should seek help for the forms and things.

I think you’ve not advocated well for yourself and You’ve been stubborn and it’s ended up you’ve cut your nose off to spite your face.
Hopefully you will now be able to change that and move froward.

Many people aren't able to advocate for themselves but nice victim blaming there.

It's not cutting my nose off to spite my face - it's not knowing how to navigate benefits systems, and fighting bloody tooth and nail to stay independent and not give in so that I never got to the stage where I needed benefits. But carry on having a go at a stranger who you don't know whilst demanding that no one dares to look funny at someone not wearing a mask in a shop because we don't know their reasons, should assume they are genuine etc etc. Do you tell those people that they are poor self advocates and have cut their nose off to spite their face?

Also for those who don't wear a mask but can. PUT IT ON so that you don't contribute to the difficulties genuine non-mask wearers face.

@MMN123

Well it might be because you keep saying you are disabled!

I have medical conditions but I’m not disabled.

If you aren’t disabled, then you aren’t disabled.

So were you shielding purely because you take medications that suppress your immune system? No other reason?

What? I have conditions that class me as being disabled - look up the definition under the Equality Act. Being disabled isn't condition dependent it's based on how it affects you. I am disabled because I am disabled.

I was shielding for two reasons - immunosuppressed and also another condition.

You have not advocated effectively for yourself. Your attitude here and what you describe proves it.

If you don’t want the assistance that is out there, that is, of course, your right but you can’t then complain that you don’t have assistance.

Pip would give you the ability to pay for transport if you don’t want to get the bus, it would let you access various schemes for reduced or free transport.

It’s not a failure to claim the benefits to which you are entitled. Pip is a benefit that can be claimed whilst in work. I know because I do it.

Again, I posted links and helpful information.

You’re welcome.

@MMN123

Well it might be because you keep saying you are disabled!

I have medical conditions but I’m not disabled.

If you aren’t disabled, then you aren’t disabled.

So were you shielding purely because you take medications that suppress your immune system? No other reason?

Might I also point out you have no right to ask anyone to justify their medical condition or disability and they have no requirement to detail their condition to you or to justify their disability.

That's the situation isn't it? Why do you feel justified in interrogating me about my conditions on a thread defending the right to medical confidentiality?

@Hearhoovesthinkzebras
Victim blaming? What are you a victim of?

You have a myriad of common medical conditions and you are being given sensible advice both here and in real life. You ignore it. You think you know better.

So ignore the people who actually know more than you. Keep travelling in rush hour because that’s when your shift starts. Don’t travel an hour or two early to protect your health and have a coffee hear work and read the paper while you kill time. Like others are doing. Far better to sit on a crowded bus waiting for the inevitable.

When you do get to work, continue to suffer in brave silence. Don’t speak to your managers about your immune suppression. Take no evasive action to avoid infection beyond sitting behind a plastic partition. When the public stick their heads around the partition and cough on you, wish them a great day and wait for the inevitable.

It’s definitely the fault of the world that you are unwell. Nothing you can do will ever change anything. You tried changing things once in 1996 and it didn’t work so definitely don’t bother trying again. Why should you have to faff about working out how to change things? Best not bother.

@Noneformethanks

You have not advocated effectively for yourself. Your attitude here and what you describe proves it.

If you don’t want the assistance that is out there, that is, of course, your right but you can’t then complain that you don’t have assistance.

Pip would give you the ability to pay for transport if you don’t want to get the bus, it would let you access various schemes for reduced or free transport.

It’s not a failure to claim the benefits to which you are entitled. Pip is a benefit that can be claimed whilst in work. I know because I do it.

PIP is notoriously difficult to get. Most people have to go to tribunal. It is not as easy as you would like to make out. And stop victim blaming those who aren't able to advocate or represent themselves.

I have looked into claiming it but have been deterred by the information on line - why is it designed to dissuade people if it's so easy and many conditions that don't affect mobility are entitled? It should be available and accessable to all who need it, not so difficult to obtain that people are deterred or hoodwinked into believing they aren't eligible.

And personally, I do struggle with admitting that I am disabled and that I need more help than I am able to admit. I'm still in the denial phase of my journey and I'm not ready to move to acceptance. Good for anyone who is.