Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?
“Do you know the fine for using someone else’s handicapped parking permit is $300?”
“That parking spot is saved for the disabled! You should be ashamed of yourself!”
Nearly everyone with an invisible illness has been told, “You don’t look disabled to me!” One of my friends replied, “Well, you don’t look stupid to me.” I just bite my lip to try to prevent the tears from forming, broken-hearted that I appear to be deceptive, when I would do anything to give back this parking perk that I use on a rare occasion.
As I circle the parking lot a fourth time on this day I hope for a spot to open up within two-hundred yards of the store, but there is nothing remotely close at this bustling superstore where I need to buy my prescriptions and milk for my toddler. My rheumatoid arthritis is flaring badly, causing extra fluid in my knees to dislocate pieces of loose bones. Every step is painful and unpredictable.
Finally I sigh in resignation and pull into the farthest “blue parking spot.” I reach for the placard–the one that has a bold white symbol of a wheelchair–and no, I don’t have a wheelchair–yet. So after fifteen years of having this “privilege” at my disposal I still warily scan the area before reluctantly dangling the placard from the rear view mirror. Is there anyone watching, wondering, or waiting, ready to confront me?
I’ve had scathing notes left on my windshield and many people, empowered by television exposés, have approached me with their opinions. Judgmental expressions and whispers sting just as much. My husband and I adopted a baby and when I would get my child of the car I would avoid eye contact with onlookers because I could hear their whispers of, “She’s not disabled! Or–if she is–she has no right to have a child!”
Nearly 1 in 2 Americans (133 million) live with a chronic illness. It could be diabetes, cancer, cystic fibrosis, fibromyalgia or even chronic back pain. Many illnesses make walking long distances impossible because of limited lung capacity, physical pain, or unpredictable numbness in the legs. According to statistics provided by the U.S. Census Bureau, about 96% of these illnesses are invisible. There is no sign of the illness existing, nor the use of an assistive device like a cane or a wheelchair.
I began National Invisible Chronic Illness Awareness Week in 2002, which is held annually in September, after witnessing thousands of people who had frustrations, fears, loneliness, and bitterness, about feeling invalidated. One’s illness, age, diagnosis, or level of disease degeneration, doesn’t change the emotional pain.
Strangers and loved ones alike doubt the severity of our illness or even the diagnosis. We’ve heard, “You look so good! You must be feeling better.” But we don’t feel better. We just bought some fake tan in a bottle and pasted on a smile.
National Invisible Chronic Illness Awareness Week is a time to acknowledge that invisible illness is more prevalent than we’d imagine and everyone–both those who are healthy and ill–can make a difference by encouraging someone with an invisible illness, rather than tearing someone down.
Are those parking spots painted blue because they give so many people the blues? That small area of square footage is a breeding ground for many frustrations as we are forced to defend our illness and character to total strangers. I’d gladly trade in my placard indefinitely for just a week of having my old body back when I could run, sit on the floor, or even hold a fork without tendons popping out of place.
I anticipate the day when a nationally designated system is formed. Texas law states that blue placards are for those who use assistive devices; red permits are for people with a “condition that impairs mobility.” In other states, red symbolizes six months of disability and blue is permanent. It’s confusing! And for one with invisible illness, the wheelchair symbol discredits both our physical pain and–in the eyes of others–our reputation. Until then, we rely on Invisible Illness Week bumper stickers.
The next time you see a healthy looking man loading groceries into his car–parked in the “blue spot”–don’t glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn’t felt for months.
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I can totally relate. My fear is different, but quite similar. I'm going to a concert next month — well, I'm praying I won't be too sick to go that day, always a risk of making any plans in advance, so attempting to go to a show is a rarity for me — and I had to get tickets in the handicapped section. I didn't WANT to, but the only tickets I could pull up were in the highest balcony, and with my illness, it's difficult for me to climb a lot of stairs, especially multiple times (I have recurrent kidney/bladder infections and may need to go to the restroom frequently). I'm already petrified about how people are going to look at me when I take my seat. I still feel so guilty, even though I've been sick for 22 years and on disability for 14. I would give anything to be able to bound up those stairs and live life like a normal person again! One of the worst times I ever had was when I got sick at a concert and spent the first half hour face down on the floor in a filthy bathroom stall, crying. I was soooo sick, and I was heartbroken to find myself in such an unpleasant and humiliating situation. Having a hidden disability sucks.
I just got my placard yesterday and I am scared to use it because I don't want people to judge or be hateful. i have fibromyalgia along with chronic hip bursitis and arthritis. Some days I feel like I can walk forever…Other days, getting out of bed is a chore. People need to realize that you have to have a doctor's order to get a disabled parking permit. You don't just go to the dollar store and buy one.
I have had the same experience. One day I had to use an ATM and though I have chronic pain and a genetic disease that makes my joint weak and suspectible to dislocation, a man in a pickup truck blocked my car so I couldn't leave and threatened to call the cops because I must be "using my grandma's handicapped placard". I told him the name of my illness and he scoffed at me and said he'd never heard of it. I asked him what medical school he graduated from and told him to call the police because I have my permit in my glovebox. After a few more minutes of venting at me, he got in his truck and left.
I cried. I didn't know what to do. I am not healthy enough to live as a normal person but I am don't appear ill enough to be accepted as a person with disability.
That happened a few years ago, and since then I've gotten a thicker skin about the issue. I use the placard when I'm having a rough physical day or I'm in my wheelchair (which I don't need all the time). But I do worry that someday somebody will slash my tires or key my car in an attempt to "teach me a lesson".
Invisible illness is tough to live with on many levels. All I can say is… let it be the other person's problem. You know what you need to do to take care of yourself. Don't let fear of what others may think or may say stop you from doing what is best for YOU!
Ugh, I've actually been stopped by law enforcement officers, twice at school, once at the hospital. (!) Not as bad as wondering what random people are thinking or if you're imagining their stares or not.
Haha, you gave me a good idea though Shannon, if I ever get confronted like you did, I think I'd threaten to call the cops on THEM! That is so awful that that man behaved that way towards you! That is what I most dread, being harassed by some ignorant busybody. But you're right we have to take care of ourselves, no one else is going to!
Shannon – I highly suspect that I have the same disorder you do. Isnt it a pain in the @$$ ! It's not even like you can say 'Yes I deserve this, I have MS, arthritis, cancer etc' Instead we have this rare disorder that many doctors have even heard of. If someone asks me why I park there I usually tell them that I have had many knee problems, a sprained ankle, or I say that I have arthritis. Makes it easier and people can't question your credibility.
My husband has psoriatic arthritis. At his next rheumatologist appointment we plan to ask for a handicap placard. It will help us quite a lot. A year and a half ago, I had a knee injury and was given a temporary handicap parking pass. I tried not to use it unless I was really hurting. I would grocery shop using a store scooter, and I was always shocked that no one ever offered to help me. Getting stuff out of the freezer case while seated in a wheel chair is impossible! People can be so cruel. I am so glad I never experienced anything like Shannon!
I first learned about this when I visited my cousin who has cardiomyopathy. At the time, she was on a heart transplant wait-list and had 20% heart function, but appeared healthy. Fortunately, she is among the few who improve from that status,and never needed the transplant, but she, too was reluctant to use her perfectly-deserved handicapped permit!
Hi….I am handicapped….born with Spina Bifida….I have handicapped plates. Not too long ago I was in a car wreck…..my car was totaled and I was given a rental with hand controls (no plates and I DIDN't have a placard)…..one of the plates off my totaled car had "survived" and I laid it on the dash of the rental car until I could get a replacement. Someone left me a note with language that I cannot even repeat…..citing all the laws I was breaking. I would have laughed if I wasn't about to cry. It made me angry….but it was also ridiculous.
This was at the same store that had carts to use…..but they told me I couldn't take it outside. Even though I had over $100 worth of groceries and no one to assist me with unloading. By the way, I use crutches and CAN'T walk without them….when I explained that to the person at the door of the store they asked me how I had got inside if I couldn't walk?…..Ummmmm….well…..I drove around for about 30 minutes until I found a cart someone had left behind …..and used it for a crutch until I could get inside. I was SO MAD……I did complain to the manager….don't know how much good it did but they started letting you drive them to your car.
This is a major problem for people that need those spaces….not everybody is obviously handicapped….and some people that use them don't deserve to….it isn't fair for the people that need them….whether you can see it or it is invisible.
Are there any laws that we could use to report the harassment we receive while using our placards? I mean beyond trying to cite ADA requirements to a public that just doesn't care. Could we write down the license plate number and a description of the person blocking us in and impeding our movement? Or the person while threatens us verbally and in writing? If we report it to the police, would they be able deal with the uneducated opinionated offender? Possibility writing a ticket with a fine or other penality?
Just a thought.
Haha, I like that Cynthia! Well I'd say if they're going as far as blocking one in, that probably is breaking some law, no? Like I said, if I were Shannon, I would've called the cops myself!
Being 18 and in college with a handicap tag is quite an experience. Just the other day when parking in a handicapped spot someone yelled at me across the parking lot " I thought you followed the rules. Your going to get caught for that." another time someone asked me "how did you manage to get that?"
The animosity is inevitable but if they only knew!
Dear Author/Lisa,
This is a poignant article that describes real problems and also ends with a real solution ~ GRACE. Grace. Kindness. These are the ways to approach the issue while not giving in to the enemy of bitterness within ourselves. (Which, of course, does not achieve anything 'against' the other person anyway).
This cannot be repeated often enough:
"The next time you see a healthy looking man loading groceries into his car–parked in the “blue spot”–don’t glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn’t felt for months."
It is true! I was in such a 'place' this time last year. Pain induced depression*. Ugly. Smiles were life-giving. (* I have 'severe' Fibromyalgia, was recently put on twice-daily morphine)
" Stop and offer to help, or just smile nicely, giving the benefit of the doubt" is just what we would want others to do for us. Let's extend that same kindness.
grateful for 'Him who sustain me in my weariness with His words',
HveHope -:¦:-
-:¦:-¸¸.·´*
(Sally Clarkson, "Words of Life")
I too had what some might consider an invisible disability which started 10 years ago. It slowly progressed to me needing a wheelchair (which I still resent to this day). Nobody ever actually made comments to my face, and likely would have regretted it due to my never being at a loss for words. I understand just how bad it is to find parking. On good days I would not have even considered using a disabled spot. On bad days I would use the one furthest from the door with the assumption that there is someone out there worse than me. Now that all my days are REALLY BAD however, I feel more inclined to use the close ones. Every step was a nighmare before being chaired, and I still have pain (I have a neuromuscular disorder which causes muscle spasms that press on my sciatic nerves in both legs) that causes me to cry out in pain whether I am chaired or not.
I am all for new and tougher rules that stop misuse of these spots. There are not simply enough of them to go around sometimes. My husband and I make sure that we make every effort to not use the spots to this day provided we are together. He drops me off in front of everywhere we go while he searches for a spot.
I'm 17 years old living with mitral valve prolapse (stage 3 heart disease) I also have Postural Orthostatic Tachycardia Syndrome (POTS) and Autonomic Neuropathy, (all of which are invisible illnesses). I was able to get a disabled parking permit at age 16 due to my heart disease. In Florida, all that is needed to get one is a form that you can get from the DMV, bring it to your doctor to authorize then return it to the DMV and they will give you a hang tag.
Anyone get the opposite comments from friends? I have one friend that loves going shopping with me (when I can actually get out) because we get the 'sweet' parking spots. And when I go for shoppping weekend (one day a year were I shop with female relatives but then pay for weeks after) people like being in my car because we get the good spots.
I have one and have so for a few years and never feel guilty for using it, I know that I need it and my dr is the one who brought it up ('So when are you going to let me write for a handicap parking spot?'). I do resent the ones that give the looks (especially seems to me to be elderly woman or young people). What really gets me is that I look fine walking into the store (after the first few limping steps before the joints get back in place) but no one sees it when I am walking out and can barely stand up anymore, get in the car and crash.
I get this all the time and I also frequently use the motorized carts in the stores. On top of my chronic pain issues and three herniated discs in my low back from catching a falling patient (Yes, I am a nurse and still work as one, but teach rather than do hands on), but I am also obese. I have had people comment that if I weren't so fat I wouldn't need to be so lazy, etc. It still hurts to have someone question me about my use of the scooter or use of the handicapped parking spot – but I have come up with a good response to "So what makes you think you should use that, I need it and I'm old" I will often either just smile and tell them "God bless you" or I have confronted them and listed off the car accident, degenerative joint disease in my cervical spine, the three herniated discs, the bursitis in my right hip, the degeneration in my right hip and right knee due to the impact of the car accident and the later back injury and then I'll talk about the pain medicines I'm on…..finally after they can close their mouth, they often stutter an apology and I will warn them not to make assumptions about people and how would they like it if someone made an assumption about them because of their age, skin color, etc. But most of the time its false bravado – it hurts and stings when someone assumes you make it up and just want to be lazy. I long for the days I could walk all day around the stores and the mall – I used to walk 3-4 miles a day plus my floor shift as a nurse 3-4 night shifts a week. I wish I didn't have pain – but I do and its sheer determination that keeps me doing what I can. My 24 year old daughter has Idiopathic Intracranial Hypertension and often needs to use the scooters as well – she also gets the same treatment or worse because she is "young and healthy" – little do they know or care to know.
I have fibromyalgia. On good days walking is not a problem. On bad days, I can't walk any better than someone who has had a severe stroke. Some days, the pain is just after getting out of the car and walking a few hundred feet, working out the kinks. On this day it looks like a big "FAKE IT". It isn't.