Thank you for posting this.

I have Multiple Sclerosis and have a disability sticker for my car. I constantly get dirty looks when I use my pass and walk perfectly fine into the building. However, me walking out? That is a whole other story. I cannot walk for long periods of time without my legs going weak and numb on me.

Some days are better than others and I could shop for a whole hour before I start having any issues, but other days, just standing for 10 minutes is enough to start losing basic function.

I hate people trying to make me feel guilty for parking in a spot that THEY think I don’t deserve, just because I am young and not elderly does not mean I don’t need the spot.

I had one woman scream and yell at me for “stealing my Grandmother’s pass” once and she called the local police and told them I was abusing someone’s pass, so the police took her word for it and wrote me a $350 ticket and put a hold on my pass number while I was in the store shopping. I had to go to the local courthouse and fight the ticket and prove it was mine. The woman I dealt with at the courthouse was thankfully very nice and apologized to me on behalf of the officer that wrote the ticket. But explained that sadly people do abuse the priviledge and “borrow” a family or friend’s pass.

hi i am also disabled an get those looks,so i kno what u mean.i have severe nerve damage an a spinal cord injury an i have no disc in my spine (only a couple left) an i have bone on bone in my knees an i have ostoprosis an ostoarthritis an all these are very very painful plus i have an enlarged heart,but dispite all this i still try an keep walking so i wont lose what muscles i have left i do use a cane to walk but they figure if u have that u dont need a handicap parking place well let them feel to try an get ur breath when u walk.its no fun i would much rather park a mile away an walk then to be in all this pain.tks for helping us many times i have went to wal mart only to turn around aN go back home because there are no handicap places open.

I have Rheumatoid Arthritis, Sjogren’s Syndrome and Fibromyalgia. I also have a kidney problem. this is why I DON’T have a handicapped placard.

I don’t want the dirty looks…I have enough guilt about my illnesses. People who think I’m lazy or a hypochondriac,or antisocial because I won’t visit or go out with friends. Invisible illness is so hard to deal with because people just don’t get it.

I’ve been thinking about getting a handicap placard lately because of a recent thing that happened. i attended a wake. There was only a small parking lot, fitting maybe 15 cars. The rest had to onstreet park. Well, I found a spot but it was two blocks away.

It was torture and I was walking so slow it took me a long time.Then I had to walk back. BUT the next day i was so sore and fatigued. That’s what happens with me… I don’t feel too much pain while exerting myself…it’s the next day that I hurt incredibly! This is why walking far ends up hurting me. This is why the need for a placard is there.

I know I wouldn’t use it all the time….only if I couldn’t get a close space. I feel there are others who are a lot worse than me.
I mean really, if theres a close space why take the handicapped one? Someone may need it more. So why do I feel so guilty asking my Doctor if I can get one???????

Hi everyone,

People do tend to look at others, and if they don’t see an illness think that that person is fine. Everyone needs to just stop and think before they act or judge others on their outward appearance. I wish I could give everone who is suffering through illness a big hug and tell them that you are all equal and matter.

My sympathies are with you, I have a friend with this condition and its awful to see the suffering in her eyes. I wish I could find you a cure. I have a son with autism and to everyone he looks like a “normal” boy so when he behaves the way ASD kids sometimes do I get filthy looks off people who are judging me for being a bad parent and him for being a bad child.

Just a not for those here who are jumping on the wagon of what fibromyalgia is…let me say this:from the Latin and Greek, fibro means fibrous tissues, myo means muscle, and algos (or algia) means pain, specifically muscle and connective tissue pain.
From this definition, many experts agree that Fibromyalgia is a connective tissue disorder. WebMD describes FM as a rheumatic condition. FM is described to affect people biologicaslly, psychologically, and socially. I’ve seen information that refers to Fm as an arthiritis-related condition. The American College of Rhematology has set forth the guidelines for diagnosing FM. The closet material that I have EVER read that said FM was anything but pain in the connective tissues and fibers, as the Latin and Greek definitions of the core words that make up fibromyalgia, is on the Mayo Clinic website, and that only states that: “It is a real physiological and neurochemical problem.”
I HAVE NEVER SEEN IT CALLED A NEUROLOGICAL DISORDER!
I have read that IT COULD BE considered a disease of the central nervous system, because of the way that it causes a malfunction of the CNS. However, there is NO DEFINITE research that calls it a neurological disorder. Could be is a LONG way from saying it IS a neurological disorder!
And, trust me, I’ve read about everything there is out there online about FM and many, many books as well. I’ve suffered from this condition for many, many years and have gone through the trials of every new “cure” or “rememdy” for it! Nothing, including the new drugs on the market have ever helped me one little bit! I’ve seen it called a muskoskeletal problem, a psychological problem, and now the research tends to the central nervous system! The hard fact that we must take home at the end of the day is that the researchers don’t know much about what they are talking! They don’t know what causes this, they don’t know how to make it better, they don’t even know how to classify it!
However, right now, it the the American College of Rheumatology that governs the diagnosis criteria of FM. Most agree that it seems to go along with not only arthritis, but chronic fatigue syndrome.
I believe that this author is and was referring to the original Latin and Greek meanings of the word fibromyalgia to describe the syndrome rather than trying to jump into the widely controversial medical placement of the disease! Also, the way that it has been described for many, many years, by experts at Mayo Clinic, the National Fibromyalgia Association, and webMD have all agreed and stated, even today in their web pages, that FM is an arthritis-related condition and look to the American College of Rheumatology to set the guidelines for diagnosis. Meaning, that as most experts seem to agree, FM is a RHEUMATOLOGICAL disorder, NOT NEUROLOGICAL!

THank you ma’am for the info. I think everyone, unless in an obvious wheelchair, has been looked at funny, or thought of as being “lucky” to get the good spaces. At the very least, I think most in the world today think or wonder “Why should THEY get the GOOD spaces! It’s not fair!” NO one believes things are fair unless they have the best for themselves. It has been thus since the beginning of time. For all affected, please just keep smiling and parking where we deserve to park. We know that we’ve paid our doctor’s tons of money before we get to the point of needing that tag or placard. Plus, there is a penalty there for the doctor of giving those tags/placards to those who do not meet the criteria and the doctors are not willing to suffer those consequences.
Another parting thought to laugh or smile at when someone gives you that look or says something to you….one day, they’ll be in your place, in your parking spot because they HAVE to be and then they’ll realize what it feels like! Ha ha ha ha ha

What a blessing that I actually read this on June 11, although I’m still trying to catch up with my unread email going back to 2005. (!!). I really needed it. In “one column” BYDLS has summed up the original reason for this group — in splendid diversity and some darned good writing. Hail, Christine! You were right all along!

Thank you for this article! My handicap placard has been a God send! I have mitochondrial myopathy. Mito has different presentations, but I have severe muscle weakness, difficulty breathing, and kidney disease. I use forearm crutches most of the time and sometimes a wheelchair.

Thank you for your description of the grieving process. Honestly, I am still going through it. I have the same well-meaning friends and even some who don’t understand my limitations. I have good days and bad days, but I look fine on the outside.

Thanks so much for this article! I have severe asthma (definitely NOT visible) and can’t walk more than 15 feet without stopping to catch my breath. I also endure the hateful looks and occasional snide comments on my perceived lack of handicaps. As always, it is good to know that one is not alone in experiences, but I wish more people would live by the “judge not” rule!

“I am not “normal”, I have Fibromyalgia. This is a connective tissue disorder.”

NO IT BLOODY ISN’T. It is a neurological disorder.

I am a moderator on the BYDLS boards, and am appalled to see misinformation like this in an article on this site. My hisband, whom I met on this site, has fibromyalgia, and has educated himself extensively about his illness.

Members of this site are supposed to be expert patients. Please see that the error in this article is corrected.

It’s so ironic that I would read your post today. I woke up this morning mad at the world. I dreamed last night that I was justifying my disability to someone who refused to believe how sick I am. I was repeatedly yelling at her in my dream. I have psoriatic and osteo arthritis. I had a really ugly encounter with some jerks at the grocery store the other day and I guess it affected me more than I thought. You are right about getting mad. It is against my nature but I have started being rude to people if they are rude to me, I am only 53 years old and I’m not gonna stop living my life for anybody.

Thank you for making normally peolpe aware of how our need to be seen and recpected for whom we are! I have drop foot and no balance because my nervesurgery failed! I fight everyday to move, and get unhappy everytime someone, except those who have the special handicap parking lisence, are using the special parking lot. Then I just have to return home without being able to shop anything! Think befor e using those places!

I admit I used to judge seemingly healthy people who parked in handicapped spaces. With time comes wisdom and unfortunately for me, also FM. Now I know how wrong I was to judge.

Brava and thank you for this wonderful article!

Deborah, you read my mind! Thank you for verbalizing! I have fibromyalgia, IBS, asthma, chemical sensitivity. (just before diagnosis I had encephalitis–so the docs were trying to make sure is was FM & not from enceph. I had so many symptoms, looked fine, labs fine–finally EMG & sleep study showed something wrong, 18 for 18 triggers–have one on back of thumb so hand shakes are horrible, I warn people first now) I do not have a permit personally. I have one for my parents when we shuttle them, at times I would have loved to use it, but never have because it is not mine. Adaptation is the biggest step for anyone, after grieving for loses. Adapting shows you are still living and want to keep going forward, though this takes some imagination to look at things from a different perspective. Yes there are things I cannot do, but look at what I can do, and do the best I can that my body will allow.

Lurley’s quote is priceless and should be posted on roadside bulletin boards: I have decided not to judge those who park in handicap places. If they have had a doctor sign off on the necessary papers, then there must be a reason, whether I can see it or not.

Hope this is a good day for you. ((soft hugs))

A very well written article. Thanks, Deborah for sharing your thoughts. I also have had the same experiences so I understand how you feel. I have Lupus and MS with a lot of other problems from side effects of the illnesses and the medicines I take. I also have a cane, but some days are better than others. I’m sure this article will help many people. Be strong and keep on writing.
Dottie 🙂

I have both MS and Crohns Disease. I originally received the handicapped parking permit for the Crohns but now also need it for the MS. There are days when walking is not fun, my legs feel like I have sandbags tied to them.

I puchased a bumper sticker for my car that says “you can have my handicapped parking if you take my MS too” that seems to cut down on the number of glares!

People just don’t think, they judge based on looks – and I don’t look sick, what does sick look like? It’s crazy!

Both my wife and I are considered handicapped. My wife’s comes from having and suffering from the after-effects of a stroke. I suffer with some natural illnesses but mostly from wounds and the effects of herbicides during the Vietnam War. My ‘individual’ service-connected disabilities, when added up, pass well over the 200% mark . . . and unfortunately seem to increase all too often.

Both my wife and I do have our good and bad days. On the ‘good’ days I imagine we look almost normal with maybe only a slight limp and we do get those looks from other people that can’t imagine why we must park in a handicap area. I will confess that I too am very guilty of watching other seemly normal people park in a handicap area and wondering if they truly are handicapped.

I believe that “fate” is the reason for our handicaps and I’ve always said I wouldn’t change anything in my past but wouldn’t shy away from asking for forgiveness. So, we go on with life and often think what it would be like to spend a day without medication, pain or not being able to participate in normal daily activities. Only thing we can keep in our minds is that there is always someone worse than oneself and we must still consider ourselves fortunate for what we do personally have on this world.

I want to say thank you also for writing this. I thought I was reading a story about my life. Well except for the part of being a grandmother, I am not even a parent. I was put on Disability the end of May 2008 because of my constant tiredness. I have had Fibromyalgia since I was 19 and have more or less figured out how to ‘suck it up and deal with it’. However when I was put on disability my fibromyalgia hit me with a vengence. I want to work again. I even thought I could go back to my old job, I was a delivery driver and shipper/receiver for an auto parts store, and I returned in September of that same year. I was there one week and went home in tears. I went back the next week and spent half of my time there in tears because of the pain and falling asleep. I have not been back to work since. In January of 2009 a doctor diagnosed me with also having Chronic Fatigue. It has been over two years since I have been able to work but I take the oppourtunity to volunteer whenever possible. At least if I call in sick while volunteering I will not loose any pay, nor will they say ‘If you continue to call in sick, we are going to have to let you go.’ I have worked in automotive more than half of my life and now I can not even go back to it even if I get cleared to go back to work. I am currently taking courses to change my whole career. To add to the Fibromyalgia and Chronic Fatigue I also have IBS, Asthma, Degenerative Arthritis in my back, no cartiledge behind my knees and I am lactose intolerant. When I seen my orthopedic surgeon when I was 19 he told me that I would be in a wheel chair by the time I was 50. I am 40 now. I have to have my partner push me in a wheel chair when we go to the mall because I can’t walk too far. My partner also has MS, so if she can’t push me in the mall chair then we just don’t go out.
Again I say thank you for sharing your experiences too. They are so familiar.

I can completely understand this. I have been in a wheelchair my entire life due to multiple birth defects from the hips down and also 2 car wrecks in which both legs were broken (top and bottom) twice. I am still able to walk some although the doctors who treated me strongly suggest that I dont (of course I don’t listen) and thankfully I am able to drive myself. Even with the disabilities I have at times when I drive up I do get dirty looks many times. It has taken me 2 years to get a handicap parking permit in the state of Florida because the doctors here do not have my records documenting my disabilities. I eventually had to send the paperwork to my doctors who had treated me in the past in GA just to get a permit here although it sometimes seems like everybody and their brother has a permit here. To look at me sitting down or driving you wouldn’t know that I was disabled so I understand very well there are many conditions that can’t be seen right away. However, I do feel they should enforce the handicapped parking a little more and be sure that the people using it are truly the ones who need it. I have a close friend who suffers from Fibromyalgia so I completely sympathize with the author of this article for the pain she deals with on a daily basis.

Wow – very nice article. I’ve not been diagnosed with fibromyalgia, but then again, I can no longer afford medical care.
A torn ACL took me out a few yrs ago, and I’ve never regained my physical condition.

Other than a different origin, so much of what you said hits home. For years, I’ve had plenty of “tender spots”, where it causes me to wince when touched. A playful nudge can cause me to cry it hurts so much. I have days where I cannot focus with or without my glasses, so I just don’t bother to read anything. It can wait until the vision clears up. I have days where typing is a real effort, despite my being a great typist for most of my life. I have all the letters – they just appear in the wrong order sometimes, like scrambled puzzles. Then it will go back to “normal”. I seem like a looney, even to myself. Work? Forget it. That left after the knee injury. So, I’m now housebound.

As a formerly very social person who loved to perform, this has been like prison. I think I could have adjusted to all the changes if I had had some warnings… something that said I needed to slow down instead of stopping. But this rug that was pulled – I cry foul!

Grieving is probably exactly what I need to do. I miss my old like to the point of being overwhelmed. You don’t realize the simple daily things of life until you can no longer do them. I can’t run to the store for bread – I don’t run anywhere, and a trip to the store is a rare thing now.

The changes it makes in the family balance is not fair either. My husband has had to take on way more than his fair share of the household chores/duties simply because he is still mobile. Our family has suffered financially, because of the lack of my income. I tried to file for disability, but while I had plenty of work credits, I was told I waited too long to try to file since my last full time job. Who knew there was a time limit for filing? I didn’t – I’d never needed to file before. I learned the hard way.
I feel like a burden to my family.

I plan on applying for a parking permit, because the walk from the parking lot to the store would have me so worn out I couldn’t focus. Now if I get out, my hubby drops me off at the door. I’m resigned myself to using one of those carts I’d always mind-designated to old people. (I am 51!) I get looks for using them, like I am a fat lazy lady. Right… well, thankfully, looks can’t kill me.

I am going to spend some more time reading through this blog. I think the grieving thing really hit home with me today. I just don’t know how to proceed.

Nice post. I once got glared at by an elderly couple (at the time I was in my 30’s) and then they made some comment to me about taking the parking space. I then said something to the effect of them judging by looks, and too bad they didn’t have x-ray vision so they could see my heart and blood pressure problems (I have dysautonomia, which causes all my “automatic” systems to go haywire). They actually apologized.

I too am dealing with similar symptoms…I have bad joint pain, muscle pain at times, and fatigue. I also have what I believe is a butterfly rash on my face (Some days it’s more noticible than others, but it never goes away), and I have yet to find a doctor that can give me a definitive diagnosis as to what’s wrong. I suspect lupus, but they did an ANA and it came back negative so they never went any farther with it. I also have scoliosis whch I have had since I was 11, and have had degenerative disc disease since 2005. Some mornings my back hurts so badly I can barely get out of bed, and the fatigue gets so bad that I have to go back to bed and end up sleeping for hours even though I slept 7 or 8 hours the night before. I never thought I’d be going through something like this at 34. I am very lucky to have a fiance who supports me and loves me even on the days I don’t love myself…sometimes I feel guilty for not being able to do the things I think I should be doing such as housework, and working a regular job, but my fiance never complains….He is amazing. I just wanted to say thank you so much for writing this. It truly means alot to me…You have given me hope that things will get better as long as I don’t give up on life or myself. 🙂

My mother had a sticker and people were so mad bc she could walk. IT drove us bonkers. She had cancer.

I have Lyme and Co and my husband keeps asking me to get one.

I’m glad you choose to keep moving. Your life touches so many people.
donna

I also have some invisible disabilities (PAH and heart failure) but I am also in a wheelchair. I’ve been told I should have to park further out because I can roll in so fast.

The problem is, people perceive handicapped parking like some kind of bonus. They don’t realize the horrors of pain, suffering, and debiklitating symptoms we “lucky” folks deal with daily.

Until that perception changes, nothing will.