How can i have a life with hidden disabilities when no one believes me!

Moe9001

Hi, I’m M from the UK. It’s a long story so i will try and break it down. 
lived abroad for most of my life.
I did really badly in school and had to leave school after year 12
I only have BTEC English 1 and ICT 1/ customer service exp/retail exp 

No matter how hard i tried to study when i was at school, i never passed anything. I had revision classes every day or sometimes every other day, i had learning support in each class, i tried revising at home each night but still never passed anything. When i moved back to the UK to get checked for a disability and this is what i found out:
Diagnosed for adjustment disorder, cognition impairment disorder, autism.

I can’t work now because of my hidden disabilities. I feel like i am going nowhere. No one believes me, not even my own GP believes me, {been to many GPs}. just because on the outside i come across so “Normal”. It makes me so frustrated that i have multiple disabilities but no one buys it. I am at a loss on what to do. 

Moe9001

Hi Teddybear12

I have the diagnoses from an NHS trust back in 2014. Because i moved around a lot, I had many GPs. The one i have now, despite showing a lot of evidence, they don’t believe anything. It is really tough everyday man. Thanks for welcoming me to the site. 

janer1967

Hi and welcome to the community 

I am sorry to hear about what you are going through 

Do you have any support from friends or family and do you have any mental health support 

If you have a diagnosis then your gp should be aware of this and be offering support 

Maybe look at some of the mental health charities like mind or autistic society for some guidance 

Moe9001

Hi Janer1967

Thank you for the comment. I do have papers to show my disability but when i went in to talk to the GP, they didn’t believe anything. I will definitely try the charities again. Thank you, I appreciate your kind words. Keep safe. 

poppy123456

HI,

I don't understand how a GP can argue if you have an official diagnosis. May i ask what support you would like from your GP?

Speaking from experience with my daughter who has Autism, learning disability and social anxiety disorder, since she left full time education and became an adult in her own right there's no support out there for her at all.

She was receiving 8 hours per week from direct payments but this stopped at the start of Covid and then she was re-assessed with a different local council (after moving house) and they decided that she wasn't entitled to any support, even though she can't even go outside the door alone.

You can refer yourself for a needs assessment from your local council https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

Moe9001

Hi  @poppy123456

It honestly is terrible people with disabilities cannot get any support from anyone. The councils are the worst. That’s awful how they have come to that assessment about your daughter. In regards to your question about the GP. After i had to almost raise my voice with the GP, they failed to answer the question when i said to them “Do you believe my official diagnoses yes or no?” I kept repeating that until clearly they couldn’t give me a straight answer so i then put the phone down.

a few minutes later they only offered me a letter stating how my disability affects me, they had the nerve to charge me money for it. I put my foot down and said I’m not paying a penny for that nasty service.

got the letter and paid nothing but it clearly shows that they don’t buy anything i say just because I’m so Normal on the outside and my disability doesn’t show. Thank you for the link for the assessment. 

Tori_Scope

I'm sorry to hear about the trouble you've been having @Moe9001. Are you interested in entering employment? Or do you not feel able to work at the moment? If you're interesting in exploring your options, you might like to access one of Scope's employment services. 

What other kinds of support are you wanting to access? 

Moe9001

Hi @Tori_Scope

The major problem is that i tried many jobs from cleaning to subway to Tesco. But because of my disability just because I cannot do 1 part of the job or struggle, they tell me i cannot stay or don’t understand that my disability is the cause.

Just because i look normal completely on the outside, everyone thinks its all fine. I had a argument with many GP’s because even they cannot answer the question, i kept saying “Do you believe me yes or no that i have a official disability and proof” i kept repeating it over and over. They failed to give an answer so i am getting honestly fed-up. 

Tori_Scope

I'm sorry that you've had that experience @Moe9001. Have you ever heard of reasonable adjustments (Scope)? These could help you to succeed in the workplace. 

I can understand that you'd feel fed up. What kind of support were you trying to access from your GP when you had those conversations with them?

Moe9001

@Tori_Scope

Every single GP doesn’t believe me at all! I am just tired of it all.
The fact they cannot even answer the simple question that i asked them which was “Do you believe i have a disability?’ They kept failing to give a straight answer. That’s why now i am way more stern when talking to them. It’s just frustrating that no one believes me at all. I am giving up slowly. They just don’t give a damn. Also with most jobs, i cannot even pass the hiring process either with way they employ. Online tests, because of my disability but again no one ones buys it. 

Tori_Scope

I'm sorry that you don't feel believed @Moe9001.

What kind of support were you trying to access from your GP when you had those conversations with them?

I'm just wondering what kind of conversation you were having with them, as that could give some context to their response. That being said, you shouldn't have been made to feel as though no one was believing you. 

Have you taken a look at the employment services link I sent in my other comment? Or the reasonable adjustments one? You can get adjustments for interview stages, too, so it'd be worth looking into. 

poppy123456

What was the reason you wanted a letter with details of how your conditions affect you? Was this for a benefit claim? 

Moe9001

@poppy123456.  @Tori_Scope yes incase Universal Credit need any letter the next time I get an assessment done.
But also because when no one believes you, its very very difficult to get anything done in this country. The more proof you have, the better the chances of actually getting somewhere. 

poppy123456

It’s worth remembering that letters from GP’s are not the best evidence to send. This is because a GP doesn’t know exactly how your conditions affect you. 

To be honest my GP would be the last person I would ask for a letter from because they don’t spend any time with me to know anything about my health conditions. 

The best evidence you can ever send is your own anecdotal evidence. Real life examples of what happened the last time you attempted that activity. 

Moe9001

I had no one else to go to. I managed to get the letter in the end. Of course i listed examples of how I can’t stay in work or even work so in the end after an argument they actually listened. 
As the person who diagnosed me years ago no longer practices anymore, as he retired so i have no contact with him anymore. @poppy123456

poppy123456

I just don’t understand why you would want to ask a GP for a supporting letter when they don’t even believe you have a health condition. 

Moe9001

 @poppy123456  The only reason is because there is no one else to ask. So now i have my diagnoses letters, alongside the GP letter and a mental health letter. I showed them my proof so i guess that is why they wrote it.
she just failed to answer my question if they believe me or not. Very strange but managed to get there in the end. Despite me being stern and told her off then put the phone down, they still did the letter. Everything is a struggle but I’m getting there. Just have to be stern and have proof. 

poppy123456

My point is, is that you don’t need a letter from a GP because it carries very little weight… anyway, I’ve  voiced my opinion so I’ll bow out now. 

Enjoy what’s left of the night ?

chiarieds

Hi @Moe9001 & welcome to the community. Perhaps I may appear controversial, but I hope not. This is just my personal experience...... I found I needed to work with my Drs, rather than querying what they thought, which might be perceived as confrontational. Please don't get me wrong, I can appreciate the frustration you've gone through, but you have a diagnosis, so why 'challenge' your GPs asking if they believe it, rather ask for the support you currently need instead?

I've been through the gamut of incredibility from one GP, who actually said he didn't mind if I tried to get answers if I went privately, as he wouldn't have otherwise referred me. Why? because I said having joints that moved too much (hypermobile) was incredibly painful. He asked for a demonstration of my hypermobility, & I put my hands down on the floor in front of my feet whilst my knees didn't bend. His comment, well I'm quite a bit older than you, & wish I could do that!

Sadly it took years to get a diagnosis, when I then had concerns about my children......it turned out to be a genetic disorder, but my then GP was happy to include all the info I'd found in my son's medical notes too, when I asked.

The consultant my son & I saw retired a few years ago, but this didn't 'undo' our diagnosis; the same will be true for yourself. You could ask for your diagnosis to be added to your medical notes, so this doesn't need to be queried further.

As Poppy says, your own detailed real life examples are way more important than any diagnosis anyway as far as benefits claims go; medical 'proof' really isn't needed with these.

Moe9001

They don’t support me. They are just difficult to deal with. 
Luckily i got the proof in the end with my actual diagnoses and the support letter from the GP. I just need to find something to do with my life next. Thanks for sharing you opinions/experiences . 
I respect all opinions and experiences shared. Many thanks @chiarieds @poppy123456

chiarieds

You're welcome @Moe9001 - sometimes it's difficult to just listen to the experience of others such as Poppy, who knows both a thing a 2 about benefits from personal experience, but also from her extensive knowledge, but please do. She helps people with the minefield of benefits advice.

Where do you go from here? Please do look into the links Tori also gave about Scope's employment services. We have heard nothing but good about the 'Support to Work' programme, so worth a try, & look at the 'Reasonable adjustments' link too.

We all try & help members in our various ways, but please listen, & look into the advice given, thank you.