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
  • Amy C

    do you have an illness Heather?

  • Crystal Story

    The requirements on the application are pretty specific and appear to be for pretty severe issues. I would like to know why so many Dr’s are filling out the paperwork for some of these people?

  • Crystal Story

    I agree with you.

  • Heather
  • Ben

    Handicap parking spaces are not tools. They are intended for those who only have one spoon. Not for lazy inconsiderate people with 10 spoons that only want to spend one spoon on parking, at the expense of people with only one spoon, so they can run multiple errands or go on long shopping trips.

  • Alicia Zarycki

    I remind people that a handicapped parking space is a tool. I don’t always need my obvious tools that show my need for the parking space my placard allows me to use. However, the space is a tool in itself. I don’t have to lose spoons on walking the extra distance to other parking spaces much further away, after using up spoons by just shopping. I still have to drive home, bring in my shopping, and other everyday parts of life. I might even get to keep a spoon or two over the course of the day or the future days by saving the extra energy and pain that not using the handicapped parking spaces would require. Besides, my personal health diagnosis isn’t something that is for the public to know about unless I choose to share it.

  • Heather

    Ok, I’ll ask you the same question. Describe to me how it feels to have severely limited mobility while having a normal gait (no visible sign of limitation). Seems all you folks can do is list illnesses and then cry. If you want to change opinions about people using disabled parking while having no visual impairment you’ll have to do more. Until then I and others will continue to assume your supporting fraudsters.

  • Becca

    You obviously know nothing about lupus, fibromyalgia, arthritis, AS or any other invisible illness! I would not wish it on my worst enemy, I pray that you never know firsthand. Since you don’t know what it feels like, stfu!!!

  • Heather
  • George

    Here’s another – http://wn.ktvu.com/story/29010441/2-investigates-arrest-highlights-unusual-case-of-disabled-parking-abuse

    Abuse is rampant. I would think people with legitimate severe limitations would be all for cracking down on abusers. My guess, those holler to mind your own business know full well they are border line eligible at best.

  • Heather
  • Bastion

    Clearly you did not because your very first comment was not nice. Perhaps you need to take your own advice?

  • Heather

    Then why did you even bother to reply to my original post? If you can’t stand the heat, get out of the kitchen!

  • Julie T

    Who do you think you are? I don’t have to tell you anything you sarcastic and rude twat. Jesus.

  • Heather

    Oh please do tell me how it personally feels to walk with no limitation and still have a mobility disability? I really would like to know. Or if you are in someway limited, please describe the limitation. And don’t give me some vague reason like you can’t walk far. Be specific in describing your limitation and how it remains “invisible”. If you can do that, perhaps maybe you will influence my opinion.

    Try again.

  • Julie T

    Cause that is clearly what I asked for.

  • Julie T

    Emotional reasoning? No, it is based on personal experience, which you clearly do not share.

  • Heather

    You clearly have no facts or logic to back up your misinformed claims. Do you really think your emotional reasoning in anyway makes your opinion true? I have no problem with you judging my opinion but if you want to influence it you’ll have to give me a sounder reason.

  • Julie T

    You are clearly not a chronic pain patient, therefore stfu.

  • Jasmin

    Sorry, didn’t mean to offend. Just assumed we had something in common we could discuss. But I see your defenses are high so I’ll just drop it.

  • Nonny

    This isn’t a pissing contest, Jasmin. Why on earth does it matter to you what meds I take?

  • Jasmin

    Ok, now you have peaked my interest. What type of pain medication do you take? What dosage and how often?

    Myself, I take a 20mg controlled release tablet of oxycodone twice daily. Once in the morning and once in the evening.

  • Nonny

    At the time I didn’t realize it could or would be taken that way, or I would have been more specific. I sincerely apologize if that’s how you took it.

  • Tory

    You say you never did, but here is what you said: “I don’t give a rat’s bottom how anyone looks at me or what they think”. You used anyone, not ignorant able-bodied people. If your original post hadn’t used anyone, then I would not have lashed out. I can not read your mind, only your text. So in the future, be sure to write what you truly mean.

  • Nonny

    Tory, I don’t have any cronies. I don’t know anyone else on this site, so if you’ve been downvoted, it’s because of your words.
    I never once said that I didn’t care about others who need handicapped parking. So don’t pull this crap that I don’t care about your brother or others like him. I never said that. I was only speaking about the ignorant able-bodied people who see someone who looks young, and does not use a chair or a cane, and mistakenly judges that I am faking it (you know, the subject of the article that I commented on.)
    I am sorry about your brother. But you are wrong about me, about my disability, and my needs. Just because I am not in a chair does not mean I have unlimited mobility. If I could go shopping all day at the mall, I would certainly be able to use any parking spot. I can’t. But you don’t want to learn or understand. You just want to be angry and lash out. So you can carry on now being a closed-minded, vicious jerk.

  • Tory

    I’m here because my brother actually NEEDs handicap parking. He uses a power wheelchair and REQUIRES the use of an access aisle. He doesn’t have a CHOICE not to use it. 9 times out of ten it will be someone like YOU, who with a little extra effort CAN park ANYWHERE that parks in a van-accesible spot just to save yourself a few extra steps back to your car after shopping all day at the mall. Your greedy need for a convenient parking spot BLOCKS someone like my brother from being able to live his life. All so you can make your life a little easier. You don’t have a clue what NEED truly means. And as you said, you don’t give a rats bottom about my brother! Piss on him and all like him, your convenience is more important.

    Oh, and get your cronies to downvote this so you can continue to ignore those you don’t give a rats bottom about.

  • Bastion

    Imagine a world where everyone only says something nice. Would that be good? Hmmmmmmm.

  • Heather

    Pain itself is invisible. However, I one’s pain level is so acute that it severely limits their ability to walk, the function of walking would be visibly impaired. If this were not true one could still walk around with a sprained ankle or broken leg and visually walk normally. But as you and everyone else knows, the invisible pain they feel dramatically impacts how they visual walk.

    The only time pain would not visual impact your ability to walk is when the pain is not acute enough to impair you walking. Clearly, if your walking normally your walking is not impaired.

    Everyone gets judged and everyone judges. Even you judge people. The only difference is your judgment says it’s ok to use handicap parking with no visual walking impairment. If you don’t call that a judgement, what is it?

  • Julie T

    I can’t believe some of these comments below. If you can’t say something nice, stfu.

  • Julie T

    Pain is invisible. Just because someone isn’t using a cane, doesn’t mean that if they parked way back they would be ok. It could be just the opposite. It is best not to judge others.

  • Nonny

    Thank you for your kind words of encouragement, Rita. ♥

  • Nonny

    Brandy, you would think that…based on what, exactly? Do you know anyone who deals with chronic pain? It sounds like you are just wildly speculating here. But if it was a sincere question, I will answer:
    For me personally, my pain gets a lot worse the longer I am standing and/or walking. Since I am sitting down when I drive my car, my pain level is not usually at its worst when I first get out of the car. You might not see as big a struggle as you seem to be expecting right then. But if you waited until I finished my errand and came back out to my car, you’d see it then.

  • Nonny

    Jasmin, of course the number of pills a person takes each day has little relation to their ability to walk. What a ludicrous inference that was. It should have been perfectly obvious that I mentioned my medication as a means to illustrate my daily pain level. Which does have a direct relation on my ability to walk.

  • Jasmin

    The number of pills a person takes each day has little relation to their ability to walk. If it did, most supplement pill takers would hardly be able to walk. Also, in my experience the age or how good a person looks is not the reason they get confronted. Most times it’s simply because they are walking really well, not because they look like models or athletes.

  • Brandy

    This just may be me, but I don’t understand how someone that can never walk 200 feet without stopping to rest would appear to be walking normally. I would think they would be struggling mightily just to get up out of their car.

  • Rita Girard

    Wow Nonny…my heart goes out to you. I struggle with Type 2 Diabetes, Severe Anemia, and a Vitamin-D Deficiency that, combined together, wreck havoc with my body. I just turned 55 and probably LOOK better than I did 20 years ago. Yet, most days, I takes all I have in me to function and APPEAR normal.
    Unfortunately we can’t escape another persons ignorance, but you can continue to share your story in hopes that someone will be enlightened.
    Peace and blessing to you! May your test become a testimony!

  • Heather

    If a placard user has no apparent walking limitation there’s a strong likely hood they are fraudulently using the placard.

    Fraud is everywhere, here’s just one example:
    http://losangeles.cbslocal.com/2015/04/23/scammers-earn-big-bucks-by-selling-disabled-parking-placards/

    There are many other ways to fraudulently obtain or use a placard. About the only way you can be pretty sure the placard is valid is if the user is using a mobility aid like a wheelchair, scooter or walker. Because no one fraudulently using a placard wants to go through the hassle of dragging around and using a mobility aid.

  • Emily

    Victoria BC is not the States. But the qualifications are similar. For example, most states use 200 feet and BC uses 100 meters. However, BC does not specifically mention prosthetic devices. They do specfically mention: “wheelchair, scooter, walker, crutches, or a cane”. More details at: http://drcvictoria.com/parking-permits/

  • Beth

    Nonny, I have been doing my part in tackling the problem. Working with my local Senators & Representatives, advocacy groups, and disability council. And part of that tackling is educating people like yourself on what the true issues are. And yes, one of the many issues is people obtaining permits when they don’t meet the qualifications. That is factual and I agree unfair.

  • NoOptions

    You said, “You can’t tell how much pain I am in”. I totally agree, I can’t see your pain. However, I can certainly see if your pain is impairing your ability to walk. Which is what I was saying in my post you first replied to. Did you just gloss over that?

    Then you went on to say, “someone might be walking short distances with no outward sign of distress”. and “will not last long on their feet”. Both very vague statements where you give no definition of short or long. So I reiterated the 200 feet qualification and informed you how long, 45 seconds, it takes to walk 200 feet unimpaired. Both of which you seem to be “glossing” over.

    Finally, you claim I would have to follow you around the store to see if you are limping when in reality I would only need to observe you walking for 45 seconds unimpaired to know you don’t meet the 200 feet qualification. And if you did meet the qualification I would see you starting to show distress within only 10-15 seconds. Were you glossing over that too?

    I await, hopefully, your logical explanation rather than just another emotional response.