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

©2016butyoudontlooksick.com
  • Heather

    So it sounds like you’re one of those who leave shopping carts in the access aisle. I hate that!

  • Heather

    I applaud you for leaving the larger spaces open. My experience tells me you are the exception not the rule. I’ve spent hours watching people come and go at my local mall and target. Almost everyone that uses disabled parking will park in the closest stall available. Since the van-accessible spaces are the closest stalls, there almost always taken first.

    The reason is simple, convenience. It’s the same reason many leave their placard hanging on their mirror, convenience. Is that part of the spoon theory?

  • Gini Houde

    The placard is necessary for my safety but I can generally walk with something to lean on such as a shopping cart. If not, it’s a bad day and I stay home if I can. The only place I take a wheel chair (so far) is the airport because I’d never make it through security standing up and the distance and pace after that is too much for me. I would never take the chair if I didn’t need it so, no, I’m afraid the power chair is out.

  • Heather

    I’m simply pointed out that just because a licensed medical doctor is involved is not a guarantee the applicant was qualified. I used prescription medications as an example that most people can relate to.

    You could always switch to using a power wheelchair and join my soap box. Are you up for that?

  • Gini Houde

    You don’t need to know what state I’m from, I truly can’t answer it anyway as I travel within our borders frequently and my placard goes with me.
    Funny you should cross over to medication abuse. Yes, there are issues, but have you also noticed the issues affecting those needing and not getting the meds? Doctors afraid to prescribe due to new DEA regs, chronic pain sufferers committing suicide because they can’t take the pain anymore and insurance has taken away coverage. The methods being used to crack down on the abusers is hurting those who truly need their medications. I, for, one jump through hoops every 30 days just to keep one I need desperately and have had to go without for a few hellish days more times than I care to remember. How does that fall under do no harm?
    I’d like to see your soap box some day, it must be impressive to fit under the wheelchair!

  • Gini Houde

    Actually, whenever possible I leave the larger spaces open. Still, having said that, I have a great amount of difficulty getting in an out of a vehicle in a ‘normal’ spot. If I can’t open the door all the way the embarrassing process of hoisting myself using the handles or steering wheel is virtually impossible. If I’m not alone I will get dropped off and picked up at the door but should I have to give up all my independence?

  • Ben

    What am I dead wrong about Sophie? The assistive device part? The unable to walk 200 feet part? Or the blind part?

  • Heather

    Well yes I’m bitter when all the van-accessible parking spaces are filled by people who can walk more than 200 feet just because the van-accessible space is one stall closer to an entrance. I think you’ve missed the spirit of why van-accessible spaces exist. They exist because without the 8′ access aisle there is no way for me to enter or exit my van. What do you use that access aisle for, park your shopping cart in? Which also blocks me from using that space.

  • Heather

    Very few states, Virginia being one off the top of my head, include cognitive disorders as a qualifying condition for a disabled parking permit. Which state are you from Gini?

    I would agree that for the most part disabled parking stalls are on a first come first serve basis for those who legally have a permit. However, it is strongly encouraged that van-accessible spaces be used only if you require the features of van-accessible spaces or if no non-van-accessible spaces are available.

    Lastly, yes placards are given out by licensed medical doctors. But so are prescription medications and we all know about the abuse and over prescribing that occurs with certain medications. Sometimes due to less than scrupulous doctors but also many times due to less than honest patients.

  • Gini Houde

    So obviously you’re bitter because someone took your spot and this has become a my disease is worse than yours. I think you’ve missed the spirit of this site, the commraderie of the spoon theory and are pointing your bitterness in the wrong direction. Good day to you.

  • Gini Houde

    My doctor gave me my placard not only for my pain and fatigue but for my safety. Specifically because my fibro and other comorbidities leave me ill balanced and prone to falls, especially here in the northeast in pothole infested and often icy lots. She wanted me to park close to the building where it was bright and busy should I take a fall there would likely be help available.
    Now, I did NOT have to share that with you. It is NOT your right to know my medical business. Handicapped spots are first come first served just like the rest of the spots, do you holler at the teenagers who take the closest spots and make the pregnant women and grandmothers park in the boonies? The placards are given out by licensed medical doctors who do not take it lightly. Walking 200 ft is NOT the only requirement. Things like severe mental illness and breathing difficulties are also considered.
    I suggest you get out and worry about your own behavior and let us worry about us and our petty parking.

  • Jeri

    Kind of like how all doctors are worried about signing for prescription drugs people don’t need? Doctor shopping is a very common practice to find a doctor who will prescribe what you want rather than what you need. On top of that, I have never heard of any doctor being banned from signing forms due to unnecessarily prescribing handicap parking. Do you have any links showing such a thing has ever happened?

  • Heather

    Keeping in mind the 200 feet criteria….. The main entrance to my local mall is in front of the food court and there are wall to ceiling windows overlooking the parking lot. So it’s very easy to watch people coming and going. It’s well over 200 feet to walk from the nearest disabled parking stall, through the food court, and down the hallway to the shopping stores. I would estimate 80+% of the people I see park in those disabled stalls complete that walk without using an assitive device or stopping to rest. It’s an honor system in that people need to honestly inform their doctor they cannot walk 200 feet. It’s not like the doctor is going to test what they say is true. It’s also an honor system in that law enforcement does not prioritize or actively patrol disabled parking. Very rare, dare I say never, do police stake out and enforce disabled parking. It’s pretty much considered a victimless crime. Hence, an honor system.

  • Heather

    A cone might help but probably not. People just don’t pay attention. They even will park in access aisles and very frequently leave shopping carts in the access aisles. I can push a cart out of the way when I’m returning to my van, but I can’t move it out of the way when parking and deploying my ramp. And I can’t tell you how many times the Van-Accessible stall is taken by a car when their are open stalls right next to it. Simply because the Van-Accessible stall is closest to the door. I wish they would locate them as the furthest away disabled stall.

  • walker

    You’re probably right about that. Thank you for suggesting a rollator in your other reply, I’ve made arrangements to try out having one in the coming week. Like many others with fibro, I spent years faking being normal because no one believed the amount of pain I was in. So admitting I need something to help me get around isn’t easy. But my other choice is greatly limiting where I can go and what I can do. At times, I can take a few good normal looking steps, but it doesn’t last.

    I’ve read online that some people put a traffic cone next to their van to block out the space. Though I personally have no clue how well it works.

  • walker

    By honor system do you mean the people who have a tag to be used as needed using it when they don’t need it? Because that’s really hard to prove or be sure of. Well, unless you see some one pull into a handicap spot at a gym, speed walk to a treadmill, and proceed to run on it for like the next 30mins. That’s not cool.

  • walker

    Yeah 5 miles is not happening. See I start of walking mostly normal, but as I go more and more things start to hurt. I keep stopping and/or adjusting my step to try to minimize the pain, but that only delays the pain being so bad that I can’t walk or stand, it doesn’t stop it from happening.

    I probably should… Up until this past year I had people in my life who thought that if I just exercised more, all my problems would just go away. So they weren’t any help and discouraged things that actually do help.

  • Heather

    Yes limping counts as walking, lol. If you can limp for 5 miles you really wouldn’t need to park close.

    Some people I know that can still walk but require sit down rest use a rollator. One of those walkers that has a built in seat. They then always have a place to sit to rest when needed.

  • Heather

    Perhaps it’s time to consider an assistive device, they can be very liberating along with providing needed safety from falls.

    I still sometimes park in the very back of lots when the van-accessible disabled stalls are all taken. It’s always a gamble when I do that, a gamble in that someone can still park next to me and block me from getting back into my van.

  • Heather

    Agreed it’s not solid proof. But it is a very strong indicator. Especially so for states that require both not walking 200ft and another illness.

  • walker

    In a way this is sort of depressing, because it’s looking at how little I can walk. I usually tried to avoid thinking about just how limited it is. For example I just tried to walk across my little 1 bedroom apartment, I had to stop twice.

  • walker

    See to me resting is sitting on something fluffy for like 20mins or more so I can give my poor joints a break and get my strength back, not just stopping for a few seconds. I do that all the time.

  • walker

    I actually used to park in the back of parking lots to avoid driving in all the slowness at the very front of the store, but that was years and years ago. Then it got to the point where I couldn’t go shopping unless someone dropped me off and picked me up at the door to the store. I tried to avoid the scooter cart things, but that only lead to every second standing and every slow step being pure agony, even if someone filled in as a sort of human cane/walker for me.

  • Heather

    It does not imply said walking has to be pain free or even effortless. It does imply that if the pain or effort required is so severe you need to stop within 200 feet you would qualify. But if you can walk painfully or taxingly for 500 yards you wouldn’t, or shouldn’t, qualify. The key here is the severity level of the disability. There are many people who have difficulty walking but still do not qualify for disabled parking because they are not severely limited.

  • walker

    I agree most of the article has nothing to do with the mobility issues fibro can cause. It points out how it can vary, and then moves on to talk about family wanting to help find a cure… A bit off topic. I can see how someone could take the article to mean anyone with a condition that is difficult to deal with should get to park close because their life sucks. Which I really do hope is not the intention of the author.

  • Heather

    In some instances yes. But on the whole disabled parking is not all that complicated. The right thing to do is only use disabled parking when you absolutely need to. But that honor system isn’t working to well. Kind of like knowing one should never speed but everyone does.

  • Heather

    Everyone needs parking. Everyone wants to park close. The question is, does someone qualify for disabled parking. Many people think they need disabled parking but that doesn’t mean they qualify. My goal is to at least get them to look up the qualifying criteria for their state. And to ponder how their desire to park close may impact others.

    You are correct in that I do not know their needs. There is no way for me to know that. Therefore all I can do is to inform them of what the qualifying criteria are. And the most simple and minimal example of that is the cannot walk 200 feet without rest criteria. I want people to think hard about how limiting it is to only be able to walk 200 feet. To think about people that truly only can walk 200 feet and how desperately important disabled parking is to them.

  • Heather

    If this article was only about someone looking healthy but still having an invisible illness I would have never stumbled upon it. This article is about about who should qualify for disabled parking. I’m hear to point out who the law says should qualify. Health appearance is not a qualifying criteria. How severely one’s mobility is impaired, which this article never discusses, is the defining characteristics behind qualifying for disabled parking. This article ignores that entire aspect of disabled parking. Which is a disservice to all those truly reliant on disabled parking not being abused.