Handicap Parking and My Invisible Illness

 

I have an invisible illness. To look at me you would see a short, fat, middle-aged grandmother. Sometimes I walk with a cane, but most of the times I don’t need it. I have a handicapped parking tag hanging on the mirror of my car. I park in handicapped spots. However, I get nasty looks when I get out of my car because I look normal.

I am not “normal”, I have Fibromyalgia. This is a connective tissue disorder. The health professionals’ don’t know what causes it, or how to cure it. There is no blood work that says, yes, you have it or, no, you don’t. It is diagnosed by a list of symptoms and a series of pressure points on the body.
They symptoms of Fibromyalgia are many and varied. What affects one sufferer may not affect another. In my case it is chronic fatigue and chronic pain. The fatigue can be overwhelming. Some days, just thinking about getting out of my bed or my chair is more than I can deal with. Doing everyday activities like washing my hair may not be possible because I can’t hold my arms up long enough to lather in the shampoo much less have any remaining strength to rinse it out.

Chronic pain is another major symptom of this disease. It is not like any pain I have ever had. My muscles hurt. My joints hurt. My skin hurts. It hurts to have the lightest touch. Being hugged can be torture. Shaking hands feels like a vise. This is where the pressure point diagnoses comes in. There are eighteen pressure points on your body. A doctor who is familiar with the illness knows how hard and where to press. If he gets a reaction on eleven of the eighteen, it is considered a diagnosis. The day I went in because of the pain, I had a response to all eighteen pressure points.

Other symptoms that go with the illness do not in and of themselves mean you have Fibro. They can be indicators of other illnesses or mean nothing at all. I have a tendency to drop small items such as keys. I have also dropped large items because I thought I had a good grip on them and didn’t. This is not always constant and some days are better than others.

It can also alter your vision. Some days it is hard to focus and other days I have clarity of vision I haven’t had in years. Some days I can walk as I did ten years ago, and some days it is all I can do to make my legs work. Some days I can eat whatever I want. Some days my stomach is in an uproar and getting any distance from a toilet is not an option.

How does this affect my everyday life? In some ways, it has been extremely negative. I have well-meaning friends and family tell me about the latest miracle cure. They also give me unsolicited advice such as if you would only . . . fill in the blank . . . you would feel better. On the other hand, there is this wonderful new doctor, treatment or vitamin that will surely cure me. They are offended when I don’t jump at the latest offering or advice, but what they don’t understand is that I have looked at all the suggestions they are offering me, and I found them lacking, quackery or just plain dangerous.
I can no longer work, even part-time. The fatigue and pain would put me to bed. I know, because I tried working part-time. At the end of the first two weeks, I was in tears. At the end of the second two weeks, I was in the bed for most of the next five months.

My love life is not what I want it to be. It is difficult for my husband to make love to me knowing that his slightest touch can be painful. This might work if you are married to a sadist, but most husbands don’t want to hurt their wives. The fatigue also plays havoc with my love life. I get tired quickly.
I have three beautiful grandchildren. I have not bonded with the youngest two as well as I have with the oldest. Because of the fatigue and tendency to drop objects I didn’t hold them as much as I did the first one.All of this led to a tremendous amount of guilt and anger. These have to be dealt with in order to move on with your life.
Grieve.
Grieve for the abilities you have lost.
Grieve for the uncontrollable changes in your life.
Grieve for the plans you had that will not come to pass.
Grieve for the you, you could have been.
Get angry.

Find someone who will listen without judging. Who will let you blow off steam. If cussing makes you feel better, use every foul word you ever heard and make up new ones. Get it out of your system. Dealing with the guilt and the anger are not going to happen overnight, and once you deal with it doesn’t mean it will be gone forever. You will have periods where they will come back. Don’t be alarmed or get depressed, well maybe for a little while you can be depressed, but deal with them in the way you know works for you. The only exception here is substance abuse. It is very tempting to drink, smoke pot, do pills or eat yourself into a stupor to make it all go away. However, this are only temporary fixes, and adds to your problems. It is not what you would tell your children or your friends to do. So, don’t you. (End of sermon)

All is not lost. I have been able to make positives out of the negatives. I now work from home as a freelance writer. It has been a slow journey, but I am making progress. I have written a few articles and been paid for them. I was a regular book reviewer for Romantic Times Bookclub Magazine, and had to stop as I had a short story published. I am developing an online reputation as a writer doing research columns, writing book reviews and teaching classes online.

My husband and I are learning to adapt to the illness and have a mutually satisfying love life. My children and grandchildren are learning to cope and know that they are loved in spite of what I can no longer do. We are learning how to adapt the activities we love to do as a family so I can take part and everyone can have a good time.

My friends and family are learning to look carefully at treatments and doctors not just for me, but for themselves too.

Now, if I could just get people in parking lots to quit giving me dirty looks when a “normal” looking woman gets out of a car parked in a handicapped spot.

Submitted by guest writer Deborah Brent

©2021butyoudontlooksick.com
  • walker

    I am curious, since you have done research about the details of this, does cannot walk imply that said walking has to be pain free? Because I know the law likes to be very specific, but can’t walk is a more general thing.

  • walker

    Even right and wrong often have very little to do with the laws.

  • walker

    Demanding someone prove they are disabled and being rude to them are not necessary to educate. It doesn’t force someone to question their need, they did that before they spoke to their doctor and filled out the form. They know their needs, it merely makes you sound like you think you know their needs better than they do when you do not.

  • Heather

    Yes, all they could do is run the tag and verify the owner of the tag is present and going into the store. They would not be allowed to ask question about the tag holders illness.

  • Heather

    Certainly. “Cannot walk 200 feet without rest” alone is a qualifying criteria in many states. Some states will tie that criteria to other qualifying conditions meaning you must have both.

  • walker

    I haven’t said that. I said that it’s possible to legally have a card and not meet that qualification, by meeting another one, so walking 200ft is not solid proof of fraud. It makes it possible, sure.

  • Heather

    Oh, I totally agree I don’t know everything. Which is why I rely heavily on the statues governing the eligibility criteria for disabled parking. It’s one thing to have an opinion about something but that many times has little to do with the actual laws. Do you not agree?

  • walker

    This article is simply about how someone can look healthy and still need a tag. How a health appearance is not proof of fraud.

  • Heather

    To educate them as to what the qualifications are. You would be surprised how many do not. It also forces introspection while giving a voice to those who have no other option other than disabled parking to access goods and services.

  • Heather

    Then why do you keep denying the fact that MOST states include the 200 feet qualification?

  • Heather

    Because this article is implying that ALL people that “don’t look sick” have an invisible illness that qualifies them for disabled parking and the public should never ever question that. Even though fraudulent use of disabled parking is real and extensive. This article does not try to solve the issue, instead it promotes ignoring the abuse, advocates for accepting the abuse.

  • walker

    The might be very helpful, since they care about customer service. Though if they find the tag was issued to that person, then they would have to let it go.

  • Heather

    Sometimes this does help. But the reality is parking violations are very low on law enforcement’s priority list. What would be beneficial is if a store owner/manager had the training and authority to issue parking violations.

  • walker

    So walking slow or starting and stopping can quality someone for a handicapped parking tag?

  • Heather

    Please explain how someone would physically only be able to walk 10 feet but display no outward signs of disability. Even if they have to noticeable gait abnormalities they still would be stopping and going every couple seconds.

  • walker

    The perilous poster was implying that you don’t know everything, which you don’t.

  • Heather

    I was only reciprocating what the previous poster was implying about me. Is it trolling to defend myself with the same logic?

  • walker

    Some states, not all states.

    Also just because someone can hide their impairment doesn’t mean it isn’t there.

  • walker

    Fraudulently using a tag by stealing or borrowing it should be reported to the proper authorities. But that does make how someone qualifies for a tag your business.

  • Heather

    I agree, in most states actually it is legal. Just like most states, but not all, include blindness as a qualifying criteria.

  • Heather

    The only thing it proves is fraudulent use of placards is real. It does not prove any one individual is or isn’t committing a crime. But as I said, the only way one could be confident they are not fraudulently using a placard is if they are dragging along a mobility aid.

  • Heather

    It is mine and anyone’s business if someone is fraudulently using disabled parking. This fraudulent use is not only illegal but it also adds an undue hardship onto those truly in need of disabled parking. Those who otherwise would not be able to access goods and services if they are blocked from parking in disabled spaces.

  • walker

    But not all states, meaning in some states it is legal.

  • walker

    That article is about people using tags not issued to them, so why do you imply that those people are the same as someone having an invisible illness?

  • Heather

    Some states specifically state that if a persons assitive device, such as a prosthetic, significantly restores their ability to walk they are no longer considered severely limited and do not qualify for disabled parking. Florida does this for example, note #2 on their list of disabilities – https://www.flhsmv.gov/dmv/forms/BTR/83039.pdf

  • walker

    That is the main thing we have been discussing, which is the opposite of ignoring.

  • walker

    So if you can’t see it, then it isn’t there?

  • walker

    This is just plain rude and trolling. How does it benefit you to be mean to someone?

  • walker

    Pretty much everyone with fibro has a high pain tolerance out of need, but that doesn’t stop the pain from being limiting.

  • Heather

    No, your the one hung up on ignoring the 200 feet qualification. Why are you ignoring it? Do you think someone that can walk 1000 yards should still be able to qualify? I know you would like to, but you can’t have it both ways.

  • walker

    If you think someone has stolen a card, ask an officer to run the card and see if it was issued to someone using the car, it’s that simple.

  • walker

    If there’s no need you you to police parking, then why/how is it you business?

  • walker

    So people who have prosthetic limbs under their clothes are not capable of walking within what most people would consider normal?

  • walker

    I hope Anna was, because they are right.

  • walker

    How does one person committing a crime prove that any other person has committed that crime?

  • walker

    Except that isn’t the only way to get a tag in every state, so yes you are.

  • Heather

    Oh I realize there are many many other ways of being disabled. But I, and perhaps we, are not talking about disabilities in general, I am talking about mobility impairment disabilities. Hopefully you do agree that disabled parking is designed for and intended for mobility impairments. Do you not?

    Assuming you do, then the concern becomes how does one define limited mobility. Well the definition can range widely but when it comes to disabled parking the definition becomes much more narrow. For example, Florida explicitly defines limited mobility as cannot walk 200 feet. Notice the wording associated with Florida’s “PERMANENT PERMIT:” check box – https://www.flhsmv.gov/dmv/forms/BTR/83039.pdf

    Other states, such as Illinois, implicitly define limited mobility as cannot walk 200 feet by adding “check all that apply” on their form – https://www.cyberdriveillinois.com/publications/pdf_publications/vsd62.pdf

    So it’s not me being “hung up” on this one definition of limited mobility. I’m merely informing you how limited mobility is defined by most States and the Federal government.

  • walker

    No I’m not inferring that all people who are disabled and can walk over 200ft are blind. I’m saying that there are other ways to be disabled; blindness was just the first example that came to mind.

  • Heather

    Yes, I agree some states, but not the Federal guidelines, do include legal blindness as a qualifying condition for disabled parking. Are you inferring that all people using disabled parking that can walk over 200 feet are blind?

    From your comments I take it you can walk over 200 feet and that in your opinion that qualification does not apply to you. Who then do you feel it should apply to?

  • walker

    Well, that isn’t the only way to meet the requirements. That’s why we have doctors make the decision instead of having a 200 foot track at every bmv/dmv.

  • Heather

    I do not disagree with what you have said. All I’m saying is there are many placard users who don’t meet the minimum “cannot walk 200 feet without rest” requirement. People who can walk over 200 feet and still use disabled parking are the ones I have an issue with.

  • walker

    I don’t think I could have said it better myself, thank you. Years ago I did park out in the back of the parking lot because it was faster. No dealing with the traffic at the front of the store, and if you walk at a reasonable pace, you get into the store while people who entered the parking lot at the same time are still circling for a close spot, like vultures. You’re right that I would give up my handicap tag in less than a heartbeat if it meant being able to walk and move like a normal heathy person. Instead this week I’m grateful that I can sit up, because last week the pain made that impossible. I’m back at my desk job this week even though it still hurts to sit, but the pain is not as bad as last week and I’m out of sick days for the year.

  • Annie MB

    NO ONE, has the right to ask you WHY you need the placard. NO ONE! You have the placard because you and your doctor determined you need it, pure and simple. It is no one’s business as to the medical reasons why you need it. I am not disabled and park as far from entrance as possible, but I would never, ever, ever ask a person who is parked in Handicapped spaces about their medical reasons, nor would I question whether they deserve the placard. To do so, would be not only incredibly rude, but also unconscionable. NEVER have I or people I know questioned those parked in Handicapped!

    Maybe a few people do abuse the placards, but I doubt it. After all, it is a sense of pride to be able to walk upright and go the distance. I believe that the people who do need and use placards for Handicapped Parking would LOVE to be able bodied and would gladly give up their placard if they knew they didn’t need it anymore.

    People it seems these days, are way too harsh and judgmental based only on their narrow minded view of you and they seem to do an instant physical assessment leading to their “assumption” about yours or others’ physical abilities or inabilities, and they are not your doctor.

    Assumptions, are usually wrong.

  • walker

    US citizens are innocent until proven guilty. Yes, having a handicap tag means there’s a chance that person is abusing the system, but having a car means there’s a chance that person stole it. Having an invisable illness and being able to take a couple of good steps doesn’t prove a person is abusing the system, but you seem to think every person here but you is guilty of abusing the system unless they make a statement that proves their innocence to you. This is no different than demanding to see the title to the car of everyone who you see driving a car.

    Just because some people commit a crime does not mean that everyone else who maybe could have committed that same crime is guilty of it.

    True, having an invisible illness alone doesn’t qualify someone for handicap parking, they still have to meet the requirements like everything else. But having an invisible illness and getting a handicap tag doesn’t automatically mean that person only could have gotten it by committing fraud and does not mean they are required to justify their need to random strangers. There are people that sometimes can look perfectly health at times, have a real true need for a handicap tag, and meet one or more of the requirements. Thing is you can’t tell them from the people who don’t need the tag just by looking at them, and assuming they are using it for convenience is not that different than saying they’re faking their illness/es.

  • Heather

    Being nice and supportive works if the disabled parking system isn’t being abused. Unfortunately this is not true, abuse is very common with disabled parking.

    Even if your state doesn’t have the 200 feet requirement, which most do, it’s still a Federal recommended requirement. It’s part of the Federal “UNIFORM SYSTEM FOR PARKING FOR PERSONS WITH DISABILITIES” guidelines.

  • walker

    Except that an employer asking if I can lift 50lb all day decides if I get a job lifting 50lb all day. Rather or not I tell you how far I can walk has nothing to do with rather or not I am issued a handicap tag. That decision is made by my doctor, and has nothing to do with you. Also you said that’s the law in most states, you have no idea what state I live in so you have no idea if my state has that regulation or not.

    It may not be illegal to judge people but it is rude, especially in a place dedicated to support and understanding. Instead of judging people who have a handicap tag but don’t look sick and trying bully them into justifying having it, the point of this article is that you should not assume you know everything about someone simply because you see them.

  • Heather

    I agree their illness is between them and their doctor. However, their abilities, or lack there of, for qualifying for disabled parking is not confidential. One does not need to know why someone cannot walk 200 feet, but they do have a right to know if you truly can or cannot. That is no different than an employer asking if you can stand all day or lift 50lbs all day.

    A disabled parking placard is not a license to avoid judgment. There is no law against someone judging another person. You may not like it, but it’s not illegal.

    So I ask you, can you walk over 200 feet without rest?

  • walker

    Which is between them and their doctor. Eyeballs are not a substitute for medical expertise and diagnostic equipment.

  • Heather

    The point I’m trying to make is even if someone is sick they still need to meet the minimum requirements for disabled parking. Which for most states is “cannot walk 200 feet without rest”.

  • Sophie

    So if you did “research” why are you making up theoretical figures? You’ve told others to “do research” and claim to have done your own but you don’t have any citations, studies, figures, or data of any kind. You didn’t do anything more than read articles on the Internet and THAT is NOT “research” nor does it prove anything.