Hidden Disabilities Time To Fight Back

eye_spy

I had allsorts of problems with mines. I am 28 and have went into remission from cancer. I had to fight through my worst times and in typical goverment style they paid out low rate dla on both after I went into remission!! I have since been told I should be on a higher rate because I now have severe IBS, muscle problems, anxiety and an auto immune disease called hashimoto's thyrioditis. All are lifelong and they restrict me to leaving the house about 1-2 times a week. I am to scared to ask for a review in case they stop it completely!

Broken_hearted

pipple wrote: »

I got told by an ex-policeman, anyone who gets abuse regarding their disability should report it, as its something thats not reported enough.

Jamla, if the bus driver says anything again, ask for his/her name or if they won't give it, ask then for the unique bus number. Then report the abuse to the bus company.

Think this is my new yrs resolution to stop ignorant people, thinking they are right and can say what they like.

If we reported everyone who treated us like crao because of DH disability we'd never be out of the police station.

sheeps68

eye_spy wrote: »

I had allsorts of problems with mines. I am 28 and have went into remission from cancer. I had to fight through my worst times and in typical goverment style they paid out low rate dla on both after I went into remission!! I have since been told I should be on a higher rate because I now have severe IBS, muscle problems, anxiety and an auto immune disease called hashimoto's thyrioditis. All are lifelong and they restrict me to leaving the house about 1-2 times a week. I am to scared to ask for a review in case they stop it completely!

I know the feeling of being scared to seek a review. I was advised I could most likely get middle rate rather than low rate care but took the decision of chatting it through with welfare rights worker. When we looked at it carefully it was very borderline so I came to the conclusion of sit tight with my current award low care & high mobility as this was an indefinate award. I would advise you to find a welfare rights worker to look at it carefully with you then help you claim if you then decide its the right move for you.

Paparika

I've only just noticed this post and thought it was great.

I have uveitis, deaf in my right ear, lost of strength in my right arm, people shake my had and i wince in pain then they laugh at me and call me a weakling

If i tell people to speak up i am partially deaf, they go into old lady mode A.r.e. y.o.u. o.k. d.e.a.r.

If i can't push or pull open a door i want to go through i get push aside from behind...

When i loose my eye sight (its been a temporary thing so far), people say i don't act blind.... umm not sure how blind people are supposed to act?

eddy51

I thought the insensitive remarks from both family, friends and officials had finished. My son has been in receipt of DLA since leaving school. For years I fought to get him help after he had been expelled from every school he went to (5 in all with lots of gaps in between) He has been diagnosed to name a few Adhd, dyslexia ,thought disorder, anorexia and depression. Everyday life is a trial for him.
The DLA was a safety net for him, a quick route for housing or medical attention.
With this in place I backed off and tried not to interfere with his impulsive ideas.
As he grew older the same problems apeared again and again. His mental health suffered.
I finally thought the past was behind when he was offered help into his own business. He is now going to set up a removal business with a £1500 loan and that he has decided for himself that he is going to give up all his benefits including DLA.
I suspect as others done, the charity took him on face value. He has always thought he should not be thought of as disabled and hates the stigma.
When I called to voice my concerns to the charity I was told they knew what they were doing and I should back off. Although they said it in a very polite way.
So he will buy a van (hes not passed his test yet) and he will have to pay public liability, tax and insure his van, keep it on the road and pay back the loan.
And when and if he has no work they will let him sign on (but stop 3 days from it each new claim I think).
I promise you I have always tried to encourage him in his ideas but I cant get the idea out of my head that if it fails (I would never let him know this) all the years of struggling to get him help will have been for nothing.
Just because someone can talk the talk in the short term (and he can) he is still being let down. A truly invisible disability................

Snapelover

I am visually impaired but I can understand why people assume that we, with the hidden disability, appear 'normal' to them and so they treat us as they would other non-disabled people.

I would hope that once, if necessary, they have been advised of the fact that we have a disability, they would then act as necessary in order to help us.

A friend of my Mam's will tell her that he seen me, waved to me, but I ignored him. After she explains that my central focls vision is gone and that I only have peripheral vision, next time he sees me he acts in the same way again!!

That's what drives me nuts. People's lack of education when they are told that someone is disabled.

annettemc

Having been challenged at supermarket parking bays,train station disabled parking bays etc. I have now decided to be as rude to the people challenging my right to park there as they are rude to me! (The majority being members of the public and not officials from the stores or stations) Unless I am falling out of my car in a diabetic hypo I do not need or wish to explain my disability to a stranger in a car park! If they want to act like sergeant majors they should get a job in the appropriate army

purpleorc

As I read through this thread I see many people on here have experienced the same things I have over the years. I was in my early 30's when I first became disabled and it is the belief of many that you can not need a blue badge unless you are a senior citizen.

When parking in disabled parking bays I have had every look imaginable, muttering under the breath and about me parking in such a bay. My disability may not have been so apparent then so it was hidden to the public so to speak. It is only as time as gone on it is more noticeable due to the strange gait and walk that I have due to MS. Still though as you pull up and get ready to get out of the vehicle I get the looks and I have heard one person say I bet shes using her parents blue badge :mad: This infuriates me I bet these ignorant people would not like to walk in any of our shoes for 24 hours though maybe if they did it would probably educate them better to the needs of the disabled. The fact we can be young and it is not engraved on your forehead that you have physical or mental challenges to deal with every single day.

minigirl762003

Hi I've just found this thread and wanted to add 'my bit'. My hubby has epelipsy and luckly doesnt have many fits in public (he has the full blown tonic clonics). However after his last ones (two in the space of an hour) he has been very down so much so he made appointment to see doc about it. Anyway he let his manager at work know and carried on going to work as normal. The other day his store manager reduced him to tears and then in front of me siad it was his own fault he was like this !!!!. He also said other stuff which is why we have gone to the union.

It winds me up that because he doesnt have a fit every day and even though he has told people that stress makes his fits worse the still treat him like !!!!.

Before he 'lost control' of his fits he was a fully quilified mechanic, but know has taken a job he hates, at part time hours as advised by his specialist, at less pay and he still gets grief.

Anyway one to a funny story (coz we all need them) We went to Florida a few years back and he had a fit in our hotel room. This was the first one I had to deal with on my own (we had only been together for a year). I tried to catch him so he didnt hurt himself when he fell. Unfortunatly he wieghs quite a bit more than me so I ended up dropping him on his face and he had a lovely carpet burn for the rest of the holiday. We still laugh about it now.

adamsmum

Hi
My 11 year old son was born with a liver disease called biliary atresia and had major surgery at 12 weeks old. He has severe scarring of the liver now and also poratl hypertension and is at risk of a life threatening bleed. He also has bladder problems because his spleen is enlarged and pushes onto his bladder, also behavioural issues from a young age. Most of Adams illness can not be seen unless you can see his scar. My child has spent lots of his young life in hospital but still has 2 speeds fast and faster and I thank God for his zest for life even if that is taking a tantrum....I am just glad he is here to do it. He will need a transplant at some point we just don't know when. The emotional issues he has to deal with alone are bad enough but the "he does not look sick.....are you sure his liver has not healed" are the worst.

We have to travel to birmingham as we have no childrens liver specialist where I live and he was only out of surgery 1 day and flying home the next we stood in line like everyone else for our tickets but an hour later we were told the flight was cancelled and we would have to stand in line again. Adam looked dreadful at this point and I went to explain to the girl about just being out of hospital, they were great and sent us to the front but the baying crowd behind us was awful......my son started crying the scared him that much....just for letting a,little boy who was tired and sore get his ticket first. Can I just say I had a good rant and told these people what I thought of them.....I did not turn the other cheek....I told them all exactly what he had been through and would go through again in 3 months time......and asked would they like there children to swop places with him so they could get to the top of the line.......they stopped brave an quick after that. Sorry but you only had to look at him to see he was exhausted and needed to sit down