I am looking into applying for a disabled badge. I have only just turned 20 and I have systemic Lupus. I was diagnosed in 2014. I was wondering does that make me eligible for it? What are they looking for? I can walk but I have fatigue constantly, but to me i just see it as an everyday thing, alot of the time it does make me just want to lay in bed all day especially if I've done something during the day but I don't know if that's enough to be able to apply for a disabled badge. If I am eligible, I would like to apply. I need advice on what is available to me, and who I can speak and can help me through the process. Does anyone with lupus had any experiences in disabled badges?
Sorry my post is all over the place, I'm just so confused aha.
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Ash2394
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I don't have lupus so I don't know,but if you get in touch with your council they will assess you and award you of you qualify.Do you receive any benefits?
I have a Blue Badge based on my Lupus symptoms. My original badge expired last month & because I had moved to a different county I had to start from scratch with a new application. As per my original application it was declined at first ( the application form isn't the most user- friendly form ) but I then sent them a copy of my Rheumatologist's latest letter & described my condition in more detail & they then issued it very quickly. I dont know where you live but I was lucky in that my local library has a service specifically for helping people apply for Blue Badges - they even took the required ID photo. Good luck with your application !
Thank you for your reply, I will look around to see if my local library can help, if not I think there is a advice bureau place that could potentially help me. How detailed was the letter from rheumatology? Should I ask my rheumatologist to make a specific letter specially for sending it off for a disabled badge?
The letter I used was quite detailed- listed all my medication & symptoms , which of course, was a great help. It may be an idea to mention to your rheumy that you are considering applying, but be careful - if you ask for a letter specifically to help with your application you will probably be charged for it. My rheumy automatically sends me a copy of any letter she sends to my GP , so I just copied my copy.
I didn't know you could get charged for specific letters wow. I'll probably just ask for a detailed letter of my condition or something, instead of mentioning disabled badge
Hi Hazel had an assessment by occupational therapist when I applied and was turned down even though my gait was ataxic and I was slower than usual ! It doesn't take into account how condition varies from day to day and even hour to hour. Never thought of sending in letter from Rheumy . I may appeal and do this !
When I appealed I went in to more details myself about how my condition varied - pointed out that , technically, I cannot walk ANY distance without pain because I wake up in pain & go to bed in pain - it's just the intensity that varies. Good luck with your appeal .
I have Lupus and several autoimmune diseases I am now 67 but been diagnosed 10 years now
I get PIP at the high level so the blue badge was easy for me they just went on info from PIP X
But my local council also are very good they do the photo and everything I suggest you go to your local council and also inform your doctor
If you are having problems with mobility or even looking after yourself I would apply for pip just phone them and if successful your claim goes from the day you rang
But you do need your doctor involved my GP signed my forms got me
My Rheumatoid Specialist says he does not get involved but I could use any letters and info he has sent to me
Thank you, I will check to see if my local council will help. Ill also apply for pip, even tho im scared I'll get rejected but I won't lose anything aha.
Thank you so much, just you saying this that I can try and not be put off by it, helps. I have been putting it off in fear of rejection, but I will apply for pip and I'll check out ESA. Did you just contact Lupus UK via email to get a cover letter?
If you are applying for PIP, ESA, Universal Credit or a Blue Badge my colleague Christine can provide you with a supporting letter and literature about lupus from LUPUS UK. Please email her at christine@lupusuk.org.uk and provide her with your full name and address.
Hi. If your council won’t help then the Citizens Advice will do a complete review of benefits you might be entitled to. They will help you fill in the forms. This can be really helpful with things like ESA and PIP where the forms are long and too complicated if you have fatigue and brain fog.
Can I also add to all this extremely good advice that when describing your condition and how it affects you do *not* do what we all do and say, 'Oh, well, on a good day I can manage 100 yrds' or whatever, because what they will read it that you can walk. Always remember to describe your *bad* days, and don't stint on the details. Gather as much information as you can before you start, but if you get turned down (for PIP, the Blue Badge or for anything), just keep appealing (Caramia, I'm talking to you too!) . It took me three goes initially and I was in a wheelchair with a broken neck on top of everything else! I read recently that two-thirds of PIP *appeals* are granted first time round (which to my mind just proves the system is not fir for purpose - but that's another rant!). Your local Citizens Advice Bureau can be very helpful; it was their advice that finally won me my DLA, and as I got the higher rate for mobility, I automatically qualified for a Blue Badge, which has been a lifesaver. GOOD LUCK - and remember, never give up!
Firstly, you must check your eligibility on the gov website or your local council. If you don’t match all criteria, you could join a letter to your application with evidence to support your application.
I think it's because I keep comparing myself to other people and my situation seems not as bad or serious as others so I keep doubting that I'll be eligible. I don't know 😅
Dear Ash2394 - I too was hesitant about requesting a disabled badge, but applied and received one quite quickly. It's not always the name of the disability, but the symptoms that you experience. Just be truthful, and explain how the illness affects you. I applied for mine online. If you don't apply, you'll never know!! Good luck
No, I still work, the only thing they needed was proof, or letters from hospital and docs, if you don't ask, you don't get as my mum used to say, hope you get on ok
Hi. Sore body etc. Lupus does not apply to us lupies. As far as disabled chits or special treatment go Trust me. My lupus has travelled through my body, affected all that it can. I too cannot walk very far. I got a letter from a Dr stating the obvious. Then I went to the traffic dept and applied. I don't know if I was lucky, but it was granted. Thank the good lord. Wish you the same. God bless
Are you getting disability /ssdi ? Once i got approved for disability i got an application & answered the questions & gave to receptionist at my docs office to sign/ approve. I think doc suppose to answer questions though, itll ask how far u can walk n how long u can sit, stand, etc. It is possible so Good luck !!!
I don't think anyone has mentioned yet that the criteria in the UK for blue badge changes at the end of this month (august 2019) to include a wider array of criteria to be able appeal to more less abled people, so if u can it may be worth waiting a few weeks as you may stand a better chance of getting it.
I. Went to CAB and they gave me lots s of tips on how to fill it in. Sometimes it depends on what council you live under
I have SLE plus other autoimmune diseases. I get higher rate PIP as like you I am stuck in bed for days at a time. Start with CAB. See what you may be entitled to. Good luck
Hi Ash, I have the same as you and I have a Blue badge, my advice would be talk to your GP and or the lupus consultant/nurse, and get their advice, if you receive disability mobility it shouldn't be a problem. I don't know if I've covered all of your questions but like you my brain wonders all over the place plus I'm Dyslexic too. Good luck and if you want to ask me some more please feel free. Lynda xx
I have a Blue Badge, but as well as Lupus SLE, along with Fibromyalgia, Osteoarthiritis and Sjogrens. I have difficulty with my breathing as well. I have recently renewed my badge and as it has all tightened up the application process, you need to ensure that you fulfill the criteria and all you need to do if complete the online application form. Once approved you have to pay £10 and the badge lasts you for 3 years.
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