http://www.sickoflupus.co.uk
Let’s get right into it! I think I’ve approached this topic before but I’m gonna talk about it again today.
Hands up if you have a blue badge? (Disabled Parking Permit)
Hands up if you deal with judgement everytime you use it?
Hands up if you don’t always use it because it’s easier to avoid confrontation?
I can answer yes to all of these. I am 30, I look relatively well, (just a bit chubby) but I have Lupus and Fibromyalgia – and a blue badge.
I got my diagnosis 13 years ago and I think I’ve had a blue badge for about 9 years. Also, I wasn’t even the one who applied for it, my mum made the application as she watched my health decline. I was embarrassed and depressed in equal measure knowing that I’d need to start using a blue badge. This is what the typical badge looks like in England. You get a card that has your picture on the back, badge number and expiration date. You also get a clock to state the time of parking. You aren’t automatically eligible for a badge either. You are thoroughly assessed by your local council and health professionals who will decide whether or not to award you a blue badge.
Who’d have thought this little badge could cause so much stress and upset for people who really need the help?
(I should state the ‘aggressor’ I’m referring to, 99% of the time, isn’t a disabled driver. It’s a member of the public who feels they simply MUST intervene!)
The main problem is that I don’t look ‘sick’ and I’m certainly not in a wheelchair. Society still associates disability with not being able to walk. The other issue is that there is definitely a problem with able-bodied people using stolen or ‘borrowed’ badges for their own convenience. I hate being grouped in with these selfish people.
So what does the badge mean to me?
– Less walking
– Less exhaustion
– Less pain
And what do other people see?
– A lazy person
– A healthy person
– A capable person
– An arrogant, ignorant person who deserves to be reported. There isn’t enough space on this blog to recall every incident I’ve had whilst using my blue badge. Unfortunately, when I’m stressed or experience adrenaline, I develop pain and pressure in my head and chest. Very often, I WON’T park in a disabled bay just to avoid confrontation with an angry stranger. To my detriment, I’ll leave the car further away, regardless of my pain or fatigue level because I just can’t deal with the stress. When my mobility is affected by a Lupus flare, it doesn’t just impact my legs and feet. It’s my chest and each footstep feels like my heart is ripping out of my chest. My legs and feet often feel like they’re being smashed with a metal pole or crushed in a vise. Most days I get the pain with the fatigue/dizziness and I can predict just how much time I have left before what little energy I have is spent. Still, I look absolutely fine.
Without fail, I can expect to see people shaking their heads disapprovingly, pointing, people taking pictures on their phone of me and my licence plate, people demanding I show them my badge, swearing and people physically getting out of their cars to tell me just what they think of me. I’ve admitted before that if I hadn’t been diagnosed with Lupus, I might have been a head shaker or a pointer. Through my illness I’ve learned compassion and to avoid judging a book by it’s cover. Even now if I see a boy racer pull up into a disabled bay, I’ll give him the benefit of the doubt. It’s a blessing and curse to have my illness be ‘invisible’. A blessing in my professional life, a curse when im forced to prove I have an illness that kills people every single day.
I remember parking in a disabled bay when I went in for chemotherapy, I couldn’t be having a more aggressive treatment if I tried. Had I been in a wheelchair or better still, elderly, i wouldn’t have had a problem.
And one more thing, parent and child spaces are often closer to entrances than disabled bays but none says a word! We accept that parent and child spaces are always closest to supermarket entrances for instance but none really questions why.
So how do you navigate through a blue badge drama? Many charities like Lupus UK have leaflets and factsheets that you can request. I keep the Lupus UK bookmarks in my car so I can simply hand it to them. Let the info do the talking. Try to keep calm and if you feel you have to defend yourself, try to keep what you say short and concise.
“I’d love to park in a normal space but I have Lupus and I’m in a horrendous amount of pain.”
” Yes I look ‘fine’ but ask me again in 5 minutes.”
” If you have a problem with ‘people like me’ using a blue badge, it’s something you need to discuss with the council.”
However, also remember that you do not owe a stranger an explanation! Perhaps turn the situation around and say:
“Congratulations, you DON’T have Lupus and aren’t forced to park here.”
I’m sure many of you will be able to relate to some of what I’ve written today. It’s sad that something that’s supposed to help us, comes with so many problems.
Thankyou so much for reading. Feel free to share, it may help spread much needed awareness of all invisible illnesses!
XOXO
http://www.sickoflupus.co.uk