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

©2010 butyoudontlooksick.com
  • TruthHurts

    Again, I’ll ask. How is providing an option being rude? It’s wasn’t the Mother that wanted the placard, it was chris.

  • Tamers

    yes it was mean. Some people only can be happy being mean. Did you not learn when you where small….If you cant say nothing nice, then don’t say nothing at all? She has now lost her Mom. She is suffering enough without rude, mean comments.

  • Homer

    Perhaps you should be asking that question to the people who are fraudulently using placards. What the hell is wrong with them?

  • Homer

    Apparently your not up to date on the current requirements to qualify for a disabled parking permit. Your ramblings show this rather clearly. It’s also obvious that your clueless on how the process works for applying and being approved for a disabled permit. What state do you live in that has a qualification of occasional need? Link us the application form for that state.

  • Homer

    Application for a permit is mostly an honor system. All the DMV does is make sure the form is filled out correctly and the appropriate signatures are there. One could easily print out the form, check the boxes, and fake a doctors signature and get approved. The DMV get’s 1000’s of applications every month, there is no way they can validate an application beyond that.

    And that’s just one way to fraudulently obtain and use a placard. There are many more. The most prevalent being people using placards that weren’t issued to them. Using a family or friends placard.

    Normally it wouldn’t be that big of deal. But the number of issued placards has skyrocketed in the past decade. On average 10%+ of the population now has a placard while ADA rules still only require about 2% of parking spaces be accessible. Resulting a in large shortage of disabled spaces and thus causing a major issue for those who actual need to park in them. The people who don’t have the luxury of using a non disabled space when the disabled spaces are full. These people have to either wait or leave and come back another day.

  • TruthHurts

    Your just spinning now. There is no reason chris couldn’t have gotten his mother a folding wheelchair, a walker with a seat, crutches, cane, or whatever she may have required to be able to walk when she could and rest when she needed.

    Also, as a permanent wheelchair user myself I find your comment about wheelchair users completely flawed. A wheelchair greatly improves ones independence. Anyone that truly struggles to walk and then begins to use a wheelchair soon realizes how much more independent they become. Anyone that thinks otherwise doesn’t have a clue what it means or feels like to have severely limited mobility.

    Seems to me the snarky one here is you.

  • Phyllis Anne

    I get it! I literally live in my bedroom. And people do not understand chronic pain either, until THEY have it. I had a major abdominal surgery that left me disabled for over a year. So I learned what real pain was. Now, I cannot even take a quick shower due to spinal pain from neck to butt. Taking a shower is a 2 hour event. Sciatica and muscle spasms, nerve pain. I never know how I am going to feel the next day. Mornings are the worst after pain med wears off while sleeping. After losing 85% of my muscles from taking cholesterol lowering drugs for a bit over a year and a half. Stopped the drug in 2012 and I was a mess. Before the drugs I had excellent muscle and strength. Thank you Lipitor!
    Pennies from Heaven! Enjoy life as much as you can. May you have many pain free days!

  • Phyllis Anne

    There are violators of course. It is up to the DMVbusiness that issues the placards to police them, along with the police. Of course the do-gooders could report anyone they think is in violation. I would venture to say that the majority of placard users have a valid need to have them and use them.

  • Phyllis Anne

    YOU go after them! YOU be the placard police, and YOU report everyone whom YOU think are using it fraudulently. I hope you get slapped upside the face by those who DO need the placard. What the hell is wrong with people?

  • Phyllis Anne

    Okay, I disagree, and I change my opinion that your comment was downright mean, rather than rude. Thinking a bit further, just by your name Mr.TruthHurts, you probably go around and make snarky comments to people on a regular basis. I was trying to be nice. And I did read Chris’s post and at no time did I get the thought as you did that he wanted the placard more, and that is because I don’t think in a cynical way, such as you do. No, your comment WAS rude and mean. I would haven’t even been able to come up with your comment and my opinion of it being rude was agreed by others reading our posts. You don’t realize that many sick people do not want to use a wheelchair since it is a huge blow to their independence and reduces their feelings of dignity especially while out in public. And in medical you never do for patients what they can already do, slowly or not, and walking is included in the care plan. Putting his mother in a wheelchair is helping to remove the functions she has left. If she can still walk, then she is to walk, NOT put into a wheelchair. For the last 3 months she has to live, why not let Chris get a placard so his mother can live out her days with dignity. But Chris seems to realize those things already and is smart enough to recognize the need for the placard.

    You don’t seem to get it, and the truth hurts MrTruthHurts don’t it!

  • TruthHurts

    Apparently you didn’t read chris’s post. Her Mother did not want a placard and it was chris who was complaining about having to drop off her Mother. In what way was I being rude to her Mother, the one who actually had a disability?

    If chris was actually worried about dropping her Mother off and leaving her unattended she had options available to not do that. I provided her one such option. How is providing options rude?

    My comment on chris wanting a placard more than her Mother was more truthful than rude.

  • Emily

    If prosthetic limbs sufficiently restore ones ability to walk then there are some states you would not qualify for a disability parking permit. It really boils down to not what someones disability is, but how significantly it impairs their ability to walk. In many states, this is defined by unable to walk 200 feet without stropping to rest.

  • barbershop_quartet

    People Stare at me and when I leave the care and approach a store, they criticize me, unable to see through my pants that I rely on prosthetic limbs and braces to get around. It’s only in the Summer when I’m wearing shorts that people leave me alone.

  • Jenna

    The handicap parking tag and the abuse or not of it IS none of your business. I’m assuming you are not the doctor who determined the need, or are working for the bureau which grants these passes based on a determined need. Occasional need or 100% necessity on the spots being available is irrelevant. If the individual has a tag, then they deserve it, and whether or not YOU think that it’s abuse of it or not is none of your business, and if you have a concern, take it up with the appropriate officials.

  • Valari Elardo

    A local news team joined with the local traffic cops and busted people during the Christmas crush. Among the many violators they showe on tv were several who kept using the placards after their hanicapped relatives had died!

  • Phyllis Anne

    You are mentally ill.

  • Phyllis Anne

    Very, very, very rude comment you made. Why? I asked. But I know, that there are so many people in the world who have zero understanding of others, much less the smallest amount of empathy for the things others have to deal with and the pain they go through each and every day. You sir, Mr. TruthHurts, are a cruel and unusual person. Pathetic comment and I am sorry that others have to read it. I could have flagged it, but I chose not to.

  • KMA

    I didn’t mean to offend. If I did I appologize. I know too well about the need of the access aisle and the chances of someone parking next to the vehicle and making it impossible to access your car. The person I was speaking of had a very able bodied husband who was able to move their car, and she was saying I had no rights parking in the handicap space because I was not in a chair.
    I hate when people park in the access area of the handicap parking and often wonder what they are thinking.

  • ChairUser

    There is more to a handicap parking space than just its location. The access aisle is the most important and most reliable part of handicap parking. The access aisle provides the space required to load/unload assistive devices like wheelchairs. Without them a person with an assistive device would never be able to get out of their van. And if they have to park in the back of the lot there is always the chance someone will park next to them and block their ability to get back into their van.

    I guarantee you that relying on van accessible handicap parking spaces is far more restrictive and required than anything you have personally experienced.

  • KMA

    I have told people, if you think I look fine getting out of my car now, hang around because I guarantee you that when I walk out of this store after buying a gallon of milk and a loaf of bread, you will see why I have that tag. I have earned my tag! I have also had arguments with a person in a wheelchair about those parking spots. I told her that her husband is not handicapped and can push her chair the extra space or two. I may not be able to walk that distance when I leave the store.

  • NoOptions

    Walk the path of someone who never has a good day. Someone who always struggles to walk only a few feet/yards. Or someone in a wheelchair that always needs an access aisle to enter/exit their car/van. Imagine you are walking their path and the last open handicap parking is taken by someone who could manage to park 4-5 spaces farther out.

    Once you realize there are people that always absolutely need handicap parking you will realize why they are dismayed with all the people today that have permits that “optionally” use them.

  • AF

    I really need to get a handicap sticker bc of the fibromyalgia, but I look “fine”. You wouldn’t know by looking at me, the pain I go through, unless I happen to be limping or wincing in pain. But you know, at this point I find myself caring less and less about what other people think or say. It doesn’t affect my life that much, and at the end of the day, they don’t walk my path and their opinions don’t change my situation. If a doctor approves it, what is it anyone’s business? Unless they are the handicap sticker police, I don’t wanna hear it.

  • Homer

    So now your saying everyone using a placard are legally using it? I can tell you right now, many many people fraudulently use placards. The biggest fraudulent use being people using a placard of a friend and family member. Another common fraud is people illegally obtaining a placard, which is easy to do.

    You need to wake up if you think all placard users have legally obtained a placard.

  • Colie Marie

    Im saying if someone has the tags, its obviously for a reason. Worry about you and more important things. Under the guise? You really think a person and their doctor pretend for people to be disabled? Theres are hundreds of invisible illnesses and you should not stick your nose in somewhere where it doesn’t belong. So YA, mind your bussiness.

  • TruthHurts

    You could of gotten a folding wheelchair and pushed your mother from your parking spot rather than making her wait by the door 10 minutes. Seems to me you wanted the placard more than your mom did.

  • Homer

    Are you saying it’s none of our business if someone is breaking the law? Or none of our business if someone is taking advantage of disabled parking? Or none of our business if people block access aisles? Or …..

    Seems to me it would be more rude to people with disabilities if we allow handicap parking abuse to go unchallenged under the guise that it is none of our business.

  • chris

    Everyone must stop judging. All I can think if is my dear mom with stage 4 cancer that refused to get a HC placard out of pride. She missed out on things her last month’s due to this. And the times we took her places and had to drop her and leave her at the door – leaving her alone for 10 minutes while we parked – she was so very sick but probably just looked old. We never knew how she would do those 10 minutes. And no one would know it was the cancer that had aged her 20 years and she would die in 3 months. A placard would have helped her enjoy her last months more and kept her safer as we could get out of the car with her and stay with her.

  • Colie Marie

    I cannot believe the rude remarks from you “adults”. It is none of your business weather or not we use handicap plates/ tags. I am disabled, Im 25, with fibromyalgia, and I sure look like im not sick. But I am in excruciating pain 24/7. I am going to get a handicap tag for my car, because I cannot walk far in the city, in the freezing cold. If I did that, it would be the only thing id do that day. So spare your rude comments, and why dont you people who are so judgemental, go pick on someone whos not disabled, anf grow the hell up.

  • Wood

    Ken, there’s a few things with your video that are misleading and many things missing.

    First the misleading parts.
    1. Not everyone using a disabled placard or plate has legally obtained it.
    2. It’s not illegal to confront someone.
    3. It is illegal to punch someone.
    4. The DMV is only an administrator. They do not have any say on who or who does not qualify for a disabled parking permit. They simply insure the form is properly filled out and signed/dated.
    5. Police are not always the only authority that can issue disabled parking violations. Some communities have trained civilian volunteers that also perform these duties.

    Now the missing parts.
    1. You do not mention the rampant fraudulent use of disabled placards/plates. The #1 fraudulent use being the use of placards/plates by people that were not issued a placard/plate.
    2. You do not mention any of the many ways to fraudulent obtain a placard. Many of the qualifications are subjective and applicants can use that to misrepresent themselves to a physician. Some doctors will not take the time to fully understand and quantify the qualifications. Applicants can doctor shop for physicians willing to sign, similar to doctor shopping for prescription medication. Applicants can forge physician signatures. Or people can fake, steal or illegally purchase a placard.
    3. 100% Disabled Veterans can also receive disabled parking privileges. This is noteworthy because DV percent ratings are not limited to mobility impairments. A veteran could receive a 100% disability rating and not have any mobility impairment. For example they could have a 100% rating due to PTSD.
    4. You do not mention the difference between van accessible disabled parking and normal disabled parking.
    5. This is a harder one. But you yourself do not take on the task of quantifying the criteria (1, 3, 5, 7) you chose to highlight as possible invisible conditions. Not quantifying these subjective criteria is one of the main reasons average citizens and physicians will approve or disapprove (judge) an applicants eligibility differently. Or more simply said, if the same applicant went to 10 different physicians with (1, 3, 5, or 7) they would probably get varying approval results.

  • Fed up with invisible illnesse

    I agree.

    I have chronic pain in both legs due to Fibromyalgia, and osteoarthritis in the knees after getting hit by a car while cycling a few years ago.

    Although I am in chronic pain all day, and can hardly stand for more than 10-15 minutes at a time, I know I do not qualify as “handicapped” due to the 200 foot rule and don’t want to put someone, like my grandmother, in a wheelchair at a disadvantage just because I feel like parking closer sometimes.

    It also pisses me off to see those other people with “invisible” illnesses jumping out of their SUVs and walking quickly, normally, into the store when I limp the entire way.

    I am tired of the “invisible” handicapps. I don’t care if I get a ever get a placard, but would love people to stop abusing them.