Sorry, Deborah. I was reading the above comments and not processing them completely. Apparently Roxy S. made the comment that someone in a wheelchair is less-disabled than she is. I think it’s unfair to compare illnesses and try to determine who is more disabled when all of us are suffering.

I have Lymphedema & RA, so most of the times walking for me is super hard — especially when I’m wrapped up like a mummy in my Lymphedema wraps. I carry so much fluid on my legs sometimes that they measure 91 centimeters around. Looking at me most people just think I’m fat and lazy. They think, “Oh, she’s so YOUNG! She must just sit around and eat all the time and because of that she thinks she’s too fat to walk from a normal parking place!” I’m 33, so I feel like most of them think I’m driving around in my grandma’s car and using her license plate to coddle my fat butt. I won’t say that it’s nice to know other people are struggling for acceptance — nothing we go through is nice. But, at least I know I’m not alone out there and that’s an amazing thought, because sometimes you think (Well, I do, at least) you’re all alone, screaming inside in the middle of a void, hoping someone, somewhere will try to understand.

Consider This:

Most of us with disabled plates for our cars get stared at. It’s not always because we don’t look disabled. Sometimes it’s to see if we do indeed have a disabled plate because there are so many people who don’t have disabled plates that go right ahead and park in those spaces because, “I’m only going to be a few minutes.”

And, unfortunately, they usually get away with it because the people in a business will not call for parking enforcement officers, the police are too busy with violent criminals to come enforce the disabled spaces, and even if those people would come to write a ticket, the offender probably will be gone before the law can arrive. Also, many cities have fines for that which are so paltry they don’t discourage the truly offensive.

This is why I believe so many people take a look at us when we park. They are checking to see if we do have the plate, and thus trying to help out when needed. I always consider it an honor that people would check for this and might even report it if they found someone violating the law.

Final thought:
In an upper division psychology class I took we learned that people around the world find that watching other people is the most interesting hobby. So some of those curious about us are just curious about the happenings that surround them. It is somewhat ego-centric to think so many people just think we are not disabled because they look at us. We are not mind-readers either.

I have to admit to being stubborn. If I’m having a fairly good day, I’ll leave the handicapped spaces for someone who’s having a bad one. If I think I can do the whole store on my feet, I’ll try. The other day I did four aisles, looked at my brother, and he led me back to the front of the store for a scooter. We frightened the greeter because I was limping so badly by the time I got there. But people like to be mean. I’ve got a friend who lost a leg at 17 to cancer – we’re glad to still have HER. She’s offered to remove her leg and hand it to ignorant people when they demand to know why she’s parked in handicapped or using a scooter. The girl is in severe, constant pain, and will always be that way. But she perseveres, and doesn’t let anyone intimidate her!

I am one of the rare people who have had symptoms of MS since I was a child. I spent most of my teens in hospitals and most of my 20’s -30’s in a wheelchair part-time. At 49 I am luckier than I have ever been with the symptoms. I have had a Disabled Parking Permit since I was 24. One thing I must say is that at 24 I was a pretty girl (I can say that now looking back at photos but at the time I didn’t know it.) So on those days when I did not need my chair I would get very hostile remarks about using the permit.

One time we went to an early dinner at a restaurant because it was not the best day for me and I wanted to go to bed early. So we parked in front of the restaurant as an older couple were coming out. The man was quite nasty, almost in my face, and said in a threatening tone “You don’t look disabled!” I was taken aback and my companion was ready to fight! But I got ahold of myself and said cheerily “Thank you! You don’t look stupid!” His wife gave him a sharp elbow to the ribs and pulled him along embarrassed to be with him.

At 49 now and not a pretty girl anymore, I still get nasty looks and the occasional comment. The biggest thing I worry about is my car getting keyed or dented or vandalized. Especially at grocery stores where the disabled parking spaces are so close to the cart return racks.

Me too. I am half blind. I can drive about 90% of the time, but my eyes adjust slow to bright light. like, day light. and my eye doctor says I will not get better vision even with glasses and signed my DMV form. And you are right, when I get out of my car people stare at me all the time, then look away when I take a header on the curb…

Thank you for this post. I have bilateral Carpal Tunnel Syndrome with Chronic Regional Pain Syndrome. I get the looks because I’m 38 regular looking except for my braces on both hands. I appreciate the grief advice also.

Thank you deborah for publishing this. I have a parking sticker due to the fact that I have an amputation of a lower leg and the other foot is in a brace that allows me to walk without causing the foot to fracture. I have a fun story as I only use my sticker when I am in significant pain. I had gone to a meeting at a state office. the lot was very full I was hurting but not as bad as some days the nearest open regular spot was about a block from the entrance I needed to go in I knew I would not be able to make it to and from my car. I decided to use my sticker and park closer. As i got out of the car and walked in someone stopped me to question why I used the sticker. there are days I just get a bit bad. so I pulled up my pant leg and knocked on my fake leg. The look on his face was interesting as he tried to back out of the discussion. I then took the opportunity to educate this person that there are many who look normal but may still be in pain. I hope it was a moment he will not soon forget.

Thank you so much Deborah for your wonderful article. I read most of the comments. But the debate over handicapped parking wasn’t really what I got out of your story.

I am 50 years old and have 5 autoimmune diseases. I have spent the greater part of 10 years convincing myself and everyone around me that I could handle it, no problem. I refused to ask for help even if I really needed it. I have a great deal of trouble walking. My husband suggested I get the parking placard. I would yell at him, “LEAVE ME ALONE I CAN DO IT”. But I couldn’t. “I DON’T NEED YOUR HELP” I would scream at him. But I did and he would lovingly help. Not once did he say I told you so. (Gotta love him. He’s still here and still worships the ground I stumble on. Only God knows why.) I played the martyr role for all it was worth and I was very good at it. DENIAL! DENIAL! DENIAL!

I came across this website and read your article a few days ago and it brought tears to my eyes. For me it wasn’t about the parking sticker. It was about the letting go. Somehow your words touched me and struck a nerve. You gave me permission to grieve. Something I had been denying myself. I cried like a baby. I cried and I got angry. I yelled at the walls, screamed at myself in the mirror and yes, even hollered at my husband. Poor guy. But I think I can move forward now. I printed out the forms for the handicapped placard. They are in my purse. Maybe I’ll give them to my doctor, maybe I won’t. Baby steps. Maybe I’ll ask for more help and maybe I’ll need some time but the grieving process has begun and that’s a good start.

THANK YOU SO MUCH

I loved what u wrote. I’m 25 years old and ibhave MS I was diagnosed in 08 I have a handicap placard and I have the same problem. I get tired often and in pain for most of the day. I have had eye problems since then. Thank you

OH – I did have someone give me a look in one of those electronic carts once. It was a prune-faced little old lady who wasn’t having to do without one (there were plenty), she was just being a busy body. I let her look me completely over and she went so far as to walk around until her eye came upon my bright purple cast up to my knee I had to wear after I got my ankle reconstructed. When her eye came to that purple cast, they immediately popped up to look me in the eye. I met her gaze and said, “Yeah, I need it. Satisfied?” She further pursed up her lip in an obvious well-worn scowl and scurried off. That was the last time I noticed anyone give me a look on the carts, even though I no longer have a visible reason to be using one.

I recently became a part-time greeter at a well-known retailer. Just so ya’ll know, we were told that since no one is allowed in the store without shoes, we are to offer a cart to those that come in barefooted so they can continue to shop – and that includes able-bodied young kids. People ought to know better than to go to the store barefooted, but there you have it.

Hi. Thank you for posting this, Deborah. I found this site about a month ago, and it’s been helpful to just read posts from others struggling with chronic pain, etc. Reading all of these comments has been extremely illuminating and frankly, disturbing when some people with chronic conditions have seemed to think that they are so much worse off and everyone else isn’t as sick and doesn’t deserve a handicapped space. Everyone has different problems, different levels of support, and different coping mechanisms.

I am 52, have been on Social Security disability for 4 years (which is extremely difficult to get in my state according to everyone I have discussed it with), and recently a disabled friend who really is much worse off than I am asked why I didn’t have a handicapped placard for my car. I told her that I didn’t think I needed it compared to her and to other people with more severe conditions. I have been rethinking it, though, because I could really use it occasionally for doctor’s visits (a medical building attached to the local hospital has very limited, atrocious parking) or when some of my conditions worsen. I have daily tension and/or migraine headaches, hypertension, osteoarthritis in my feet, knees, neck and lower back, plantar fasciitis which went undiagnosed for at least 3 years, severe urge incontinence and frequency caused by the surgery which was supposed to correct a lesser bladder problem, back pain caused by the implanted device supposed to help regulate my bladder, IBS, untreated sleep apnea (can’t tolerate CPAP), insomnia, and PTSD, chronic depression and anxiety due to all of the above, particularly surgery and procedures which have made me worse instead of better and caused new problems. I also have some severe undiagnosed muscular pain, but the new pain specialist was so off-putting and spoke to me like I was a complete idiot that I’m not sure I can go back to him. When I feel like garbage, I generally don’t leave the house, which has been extremely isolating. However, some days I absolutely have to leave the house to go to the doctor’s, pharmacy, or help/visit my mother who is 82 and generally in better health except for the heart condition she has. On some of those days, I could use the handicapped tag, particularly in the cold weather which worsens several things. My husband lost his job recently, so he has more free time and is wonderful about doing a lot of errands, grocery shopping, etc., but on some days I just have to get out of the house if I am able.

Before I became disabled, I admit that I sometimes thought that people in handicapped spots didn’t look sick, but I never even thought about accosting anyone especially since I’ve had some of my invisible conditions for over 20 years. My father also had COPD for 20 years, and for the first few years, until he was on oxygen, he didn’t look disabled. It’s very upsetting to think that people with chronic health conditions could be so judgmental of other people with them, visible or not. I completely understand the anger because I have struggled with that for a long time, and recently I have been trying to figure out how to talk to some family members about my conditions just so they understand better what my life (or lack thereof) is like. If family doesn’t get it (and I know mine at least tries), how is the rest of the world supposed to when I don’t limp, use a wheelchair, etc. I guess this is, unfortunately, just how some people are, and I don’t know if I want to risk having to confront the able-bodied or disable people who may think I don’t look sick. Sad, isn’t it?

I have severe pain and nerve damage from a spinal injury as well as fibromyalgia. I had rods placed in my lower back 12 years ago. the rods are now broken and cant be fixed or replaced because of the risk. I am 36 years old. I have actually had my car blocked in a handicapped parking space while the other driver called the police because I was not disabled but was using someone elses tag (the police actually threatened to ticket the other driver for blocking me in). I have been cussed out by multiple disabled vets for using the handicapped parking space because I was very obviously not disabled. My husband feels the need to explain to people why I occaisionally use an electric wheelchair and my children defend me to people that make comments about being to lazy to walk. Sometimes I think it would be easier to tattoo “disabled: please see scars for proof” on my forehead. Well, I used all my spoons for today at church, just wanted to share with someone that understood.

I wish somedays that I had a parking pass, for the fatigue and the stiffness. But I remind myself that the walking is actually good for me and I should keep it up as long as possible. Many people are in greater need than I am.

My daughter sprained BOTH of her ankles at the same time and had to use a walker for six weeks, she got a parking pass but she didn’t us it too often. Mostly she walked, slowly, from class to class at college, which by the way was in the mountains, uphill both ways, literally, because it was less struggle than moving the car all the time.

What really annoys me is the people who park at the curb or in striped zones, especially if they are between diasbled spots. Those people, I make ugly comments to as I pass and I complain to the management about not enforcing parking rules.
Don’t break the rules people, able or disabled.

I know how you feel. I have three compressed disks in my lower spine, arthritis in both knees, and both diabetic peripheral neuropathy and Morton’s neuroma in both feet. About two weeks ago, I went to the grocery store and found a car blocking two of the disabled parking spaces near the entrance. I honked at the driver who flipped me off and then finally pulled forward so that I could pull into the spot. When I got out of my car, he yelled at me that I didn’t look disabled to him and that I should simply loose weight (I’m a good 200 pounds overweight) and then proceeded to inform me that he was waiting to pick up his wife who had recently had surgery and had gone into the store to get her prescription. I simply ignored this nut but thought to myself why in the world would he make his wife go into the store after surgery when he could have left her in the car and gone in for her and not blocking disabled spaces in the process. And secondly, if she really needed to be able to have easy access, why her doctor didn’t sign the form for her to get a temporary permit until she had healed. Unfortunatley this store is notorious for having vehicles without a disabled placard or license plate parked in the disabled spaces and the store management never seems to care.

I know exactly how you feel as far as parking goes. I’m a 24 year old with Reflex Sympathetic Dystrophy. I had to leave my job in my field due to the pain, and decided to go to grad school. To help me get by, I work a few hours a week at my school’s library. I, too, have a parking tag, and even if I’m feeling “ok” when I get to school or work, I park in the accessible spot anyways, because I don’t know how I’ll be feeling on the walk BACK to the car. I often get weird looks from people as I get out of my car, but the other day I got really angry.
I drive 30 minutes to get to campus, so when I get out of my car, I’m usually really stiff and limp a bit. Once I stretch my legs, my limp gets better (until I begin to overdo myself and start hurting). As I was putting the newspapers on the shelves in the library, a community member that uses the computers each day came up to me and said, “wow, you sure got rid of your limp quickly.” (obviously implying that I had faked a limp to make my parking tag look legit). I turned to him and (had I not been at work, may have been pretty rude) said, “I have a chronic pain condition. I drive a half hour to work. I hurt when I get out of my car, and I hurt when I leave work at the end of my shift. My limp comes and goes.” He looked at me and just said, “sorry,” and walked away.
It’s so frustrating for me, and everyone on this site, because WE DON’T LOOK SICK! A 24 year old should NOT have a parking pass! But I do! Don’t ASSUME things about me. Ask questions and I will be MORE than willing to explain my condition. Don’t think you know everything about me. I’m not being lazy, I have chronic pain. Ask. Get informed. Do NOT assume you know me.

Sorry for the rant. But your post really hit home to me, especially since my incident was so recent.

*gentle hugs*

I have been diagnosed with Hashimoto Encephalitas, Stiff Persons syndrome with the variant of PERM, (combined the short list is uncontrolled partial or complete muscle spasms, unexpected naps that can last 20 hrs, seizures, sudden drops in BP [50/29] killer headaches 24/7, and never ending fatigue the list goes on forever)

I love life and I miss getting out and about. I look happy when I am out, I have makeup on (i call it painting my eyes open) and I am going to have a great time even if it kills me-which it might. Now I am fat I have gained 65 lbs. from 5 yrs of prednisone. More than one person has asked me when I was due….I laugh and tell them it is my extra beauty. ( it also gave me a good idea and I now own several cute maternity tops!)

So anyway you see me get out of the car at Target and I have my eyes painted open, looking cute in my maternity top and I do not look handicapped, (dirty looks from the blue tag patrol) then my husband gets out with his oxygen tank-he has COPD. (ah! eyebrows raise-must be for him-he looks sick) then hubby starts to get my wheel chair out of the back (eyebrows drop into confusion) They have nothing to say. Yes we need a power chair so the sick man on oxygen with a heart problem doesn’t have to push the fat lady around.

The real point is who are and why are all these people watching and judging? If you have a tag use it as needed, if there is a car without a tag lets call them in but lets not judge the people. It maybe there only day out that month or that year. Your judging may be taking the only spoon left, and on this page we all know what that feels like. So lets start it here with this forum an effort to let go of judging and hand policing over to the police. No tag=call, harassment=call. For the rest of us, acceptance, cause we are all in the same boat, for different reasons, but we all are in this boat trying not to get tossed out to sea. And most of us are too tired to swim.

My hidden disease is PTSD and depression, I dont know if they are 2 separate illnesses so I just say that. I also have Venous Stasis which is the blood going down my legs is fine but going it says heck no. So my feet, ankles, and half of my calves are so swollen I cant even find a pair of shoes to wear. I have to wear men’s house slippers and there is absolutely no support at all so the DDD in my back gets to hurting, arthritis in my knees all of a sudden. I have a handicap placard and park in disabled and ride those idiotic motor thingies in the store that are always screwed up some how or the battery is dead. I dont care what people say about me being in a handicap spot, what hurts is when I walk by a mom and her kid and the mom “says do you want to look like her” or some kid looks at me and says your fat. Those words hurt so bad but what can you say, my medication causes the weight gain, I’m 52 now but in my younger years 0-35 yrs I was skinny and could do anything I wanted. The only time I get a laugh about my weight is when my 5 yr old grand baby asks if I’m going to have a baby. Now I dont mind what she says because I know she loves me with no boundaries and I say no I’m just fat and I get a big hug and kiss and told I love you.

Hi,
Reading all these posts about invisible illness made me think too. I have seen people parking in disabled bays (ENGLAND) and wander off with no problems at all and I do believe there is a huge amount of people using blue badges (what we call them in the UK) without any true illness. The system is massively abused.
Having said that I will go on to say that my wife is recovering (very slowly) from Guillan Barre Syndrome and I am a sufferer of Postural orthostatic tachycardia syndrome, some days I am fine and others I can hardly move, however I nor my wife have been able to obtain a Blue Disabled Badge for our car. The rules to obtain a badge have now changed and your doctor has no say in the decision??? A questionnaire is filled in and sent to the local council, they will have no contact with your doctor of specialist at all. If required you have to attend an interview but it is not a medical interview with a doctor, just a small group of council employees who will decide if you get a badge or not. How lubricious is that? This is England in the 21st Century.
No wonder this country has gone to the dogs.

I have fibro as well and I try to use my permit only when I absolutely have to because I know how much that close parking place can mean. I get so annoyed at my FIL who uses my MILs parking permit just because he can.

I get so many nasty looks when I use it. After all, I look about 20.

I wish those who didn’t really need the parking places wouldn’t use them just because they can. In most cases, these are family members of those with the permits.

Have any of you noticed how some places have the parking places near the back because that is where the wheelchair ramp is. What about those of us who have the permits because of walking?

I have also had such nasty looks because of using electric carts. I had one lady tell me that I should leave the carts for those who REALLY need them. If only she knew….

It is also the same thing with handicap bathroom stalls. How many times I have had to wait because the only stall in use is the handicap one and I would not be able to get up otherwise. and they are always at the far end of the room. I had one older lady tell me I COULDN’T use the stall because it had handrails. At that particular facility, they ALL have handrails.

If you could make a person walk an hour in your shoes…

Thank you Deborah for writing this article. The older I get the more I realize the world is made up of all types of people, with all kinds of abilities and disabilities. I cannot read all the comments on this post and attempted to understand why individuals comment on other posts that have nothing to do with the original post.

I have had a Handicap Parking sign assigned to me by my doctor, via the motor branch responsible for making it possible for me to gain access to the available ones when I go out to various areas I need to be for either health, or other services I require daily. When I am not feeling well enough, I use the spot if there is one, and if I am having an ok day, I’ll find a close enough one to the nearest door.

I too have an invisible illness “chronic pain,” which has given me a life time to think how to stop thinking about what others think about me using the spot I need when I need it. It stared when the spots became less in certain parking areas, and the ones with lots less obvious to others. I have been chased into malls by security officers, yelled at males who were looking for a target to take out their anger, and given counsel by women who decided they need to inform me why I should not be driving with the pass on my window, or who did I think I was using a spot when I looked perfectly fine. Wow, scary people, with a negative intent to inflict emotional pain, on top of my current condition. One was mad because I would not move my car, so he could take the spot, and parked behind me, at the grocery store. After much talking about it with able body, and disabled people, I decided, to go back in the store I came out of and stay there until the individual disappeared from view.

I no longer look at them, I walk away, or get in my car, turn on the radio, and ignore, ignore and ignore some more. I won’t engage with irrational people. I did for about 5 years ago, and every time, the situation got out of hand, my stress level increased my pain level. Not to mention the more I thought about it, the more often it would happen. By being entitled to the spot, instead of feeling guilty about using the spot, every thing every turned around for me.

I have no right to judge others that have a pass, and I don’t expect them to judge me. I had more trouble with able body individuals than disabled people. The percentage was more men than woman. I realized it was my fear that made it possible for others to sense my guilt, and that’s when I got dirty looks and rude comments. Most of the people didn’t look at the pass in my window. They saw me get out of the car, and then all hell would break out.

I asked a few people what to do when a guy out front of a department store started screaming at me, and he said, get the license plate and call the police. So last year, I did exactly that, got the license plate, couldn’t call the police because I didn’t have my cell phone on me. However, I did meet a police officer in the next destination and spoke with him. He took the piece of paper and said he would have a chat with the individual. A sense of relief came over me. Finally a voice, protecting me. Since that time, I have the police’s phone number in my cell phone, won’t engage, but not waiting for it to happen again either. Honestly have had no problem since this time last year.
It’s like my secret weapon.

I believe by feeling better about myself, being entitled, not allowed to use the spot has changed my ability to let go of the fear, and replace it with a positive non-guilty feeling when I need to use the spot if it’s available to me.

It’s been wonderful, knock on wood, not to deal with people that don’t want me to use a spot they might or not be entitled to use.

Reporting it as a crime, which I feel it is, to an act of irrational response of an individual that is a stranger to me, who intends me harm by negative comments that harm my emotional well being, as bullies do when they decide to mind the business of others.

Good luck in the future, and thanks again for posting this article.

I hope one day for a cure for chronic pain, the bandages like parking spots are intended to help, not to harm.

I had to comment! I have Lupus, Fibro and End Stage Kidney Disease. I got my Handicapped placard because my body retains so much water in my legs and feet that they swell up to the point that I can’t wear shoes. And it’s extremely painful and difficult to walk. Every time I have parked in the handicapped zone and my family & I get out of the car people automatically stare at me. I know they think I’m just trying to get close parking because I look young and I look “normal” and that really bothers me. I just wish people wouldn’t assume I am trying to score a good parking spot.

Sherrie, Allison specifically adressed Roxy S. who commented here stating that wheelchairusers should be using spaces in the back as they are able to wheel themselves to to shop whereas she couldn’t walk the longer distances to the antrance.

Roxy actually stated that a wheelchair user was less disabled than she is.
Apart from the often named fact that wheelcair users depend on extra wide spaces and the only ones are the handicapped spaces Roxys statement shows her absolute ignorance of the whole matter.
Wheeelchairusers comes in all sorts – some of them very fit and well trained waist up – others hardly able to move their chairs very far due to general weakness or tetraphlegic paralysis and any other given conditions.

Its people like Roxy S. who make it harder for me to cope in my daily struggle to get on with my life… on wheels 😉

Thank you just does not seem like enough to say to you for writing this. As I write, I am experiencing such crippling pain in my hands that I can just about stand it, but I wanted to thank you for this. It means a lot. I hope that you don’t mind if I send it to my husband. He sometimes gets angry that he has to do so much for me. It hurts to even ask, so when he gets angry, it is just devastating. I hope that this helps him understand. Thanks again!

Thank you so much..I am a recent fibro spoonie (October 2010), but my husband believes that I had it long before I was diagnosed. My balance is so bad some days, I have to walk with crutches, and people, especially my manager, think I am being silly (I’m 29). There are days I am afraid to drive because my perception is wretched, and days when I stop by a store after work, but have to use one of the wheelchair carts, again earning the stares around me (Why is that young girl using that when there are people who REALLY need it?!?). Sure, I could walk to the back to the store..but getting back to the front might require someone carrying me!
I just recently found this site, and it has made a big difference, knowing there are people who know JUST HOW I FEEL!!!!