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
  • Samuel

    Since these episodes are occurring often and putting you at risk of falls and possibly injury, It’s probably time to discuss these episodes with your doctor. I can’t imagine the doctor wanting you to take the risk and probably would recommend a better mobility aid. You would then use the mobility aid when shopping to minimize risk. Remember you can still exercise to maintain mobility, but do so in a more controlled environment.

  • Amy Allen Tindall

    Yes that’s exactly what I do. I have to sit down and rest…it’s happened in the middle of an aisle at Walmart. I have to stay there until I’m able to get up. I’ve even had to call friends to come and get me. I do keep a cane in my car. If I feel something coming on, or I feel like something just isn’t right I will use it from the start. The doctor doesn’t want me to rely on the cane unless I really need it. I also so excersises to keep the mobility that I have for as long as possible.

  • Samuel

    The many times you were not able to walk back out, how did you get back to your car? Did you rest somewhere in the store until you were able to?

    Also, if pain and fatigue can hit you out of nowhere, wouldn’t you want to be always using some sort of mobility aid to assist you when they do suddenly occur?

    I ask, because it always seems skeptical when people claim they have these occurrences but yet never seem to do anything to handle them. They just mysteriously endure them in some way and seem to not really worry if they will happen again.

  • Amy Allen Tindall

    I have multiple sclerosis. An invisible

  • Lisa

    Why put blame on the cop? You were illegally using your mother’s placard. Does not matter if you yourself are disabled or not. You had no need to tell the cop you were other than to try and talk your way out of a ticket. If you had just accepted the ticket, thanked the cops for doing their job, and went on your way; the cop would never become angry. Your very lucky they did not confiscate the placard along with giving you a ticket, which is what they are suppose to do.

    The cop was not abusing his authority nor was he discriminating against you. You will not be able to beat the ticket even with a lawyer. It’s a clear violation, you were not the owner of the placard and your Mother was not with you.

    What you should do is get your own placard.

  • yongxinquaini22

    Coach Outlet COACH brand and its products worldwide. In the English version of “ELLE” (World Court of fashion), “URBANITES” (city Coach Outlet Online people), “NEXT MAGAZINE” (One Week), “ZIP MAGAZINE”, “VOGUE”, “LUCKY” and other famous fashion magazine, Japanese edition , Traditional Chinese, Simplified Chinese version on invested heavily About COACH products. Meanwhile, in the Chinese-speaking world, but Coach Bags also as the “Apple Daily”, “Hong Kong Economic Times”, “Ming Pao Coach Wallets Weekly” and other famous Chinese media put a lot of Chinese advertising to study the Chinese market. These well-known newspapers and magazines are further introduced a special article written Coach Baby Bags COACH brand and give a high evaluation.

  • Just Me

    My moms been in a wheel chair since she was 21. I understand as much as anyone the importance of enforcing the law, especially when it coms to handicapped parking. I am disabled, but never applied for a placard because my mom has one and she is always with me. I suffer from a mental disorder and stage 3 hyper tension. Last blood pressure check showed 240. My mom sent me to the market and because I started to feel very dizzy I parked in a handicapped spot. When I walked out of the market I noticed two bicycle cops standing near my car. They asked me the usual questions ID/Reg, etc. I told them it was not my placard so they wrote me a ticket. I couldn’t have lied and said it was mine, but I pride myself on my honesty. I told them I am disabled and the one cop said no your not. He asked why I don’t walk with a cane or use a wheelchair. I was polite in my reply and told him never judge a book by it’s cover, that’s why he became angry and screamed for his partner to tell him the statute for the max fine of $500.00 His partner who wrote the ticket for him said he felt bad because he knew his partner was having a very bad day and taking it out on me. I was always told by the cop not to go to court to fight this because he would put the fix in to make sure I wouldn’t win. Basically it comes down to I was legally wrong for parking there without my own placard and he was wrong for abusing his authority and discriminating against me for having a disability that he could not see. I guess I shouldn’t bother going to court because what is the point if as he says the fix is in. I can’t afford $500.00 as we can not afford to buy food near the end of each month and a lawyer is out of the question. My license will end up being suspended for failure to pay so I will have no way to get my mom to her doctors appointments. Basically we are screwed.

  • elaine

    i can’t imagine someone with colorblindness qualifying. when my doctor and i did the paperwork it was very detailed about my physical abilities. i live in mass. the doctor had to be very specific what i could and couldn’t do physically.

  • Martha

    In what state does colorblindness qualify? Whether someone with lupus, fibro, EDS, or any other disease/illness can or cannot walk 200 feet depends on the stage/progressing/classification of their illness. Some will not be able to, some will. To categorize all of them as cannot is misleading and false.

  • Kitten

    Actually someone with colorblindness can qualify for a handicapped parking permit. Stupid, but true. There is little to no restrictions for these spots. Also, someone with lupus, fibro, or my own EDS, can NOT walk 200 feet. I used to park, and walk in to get a scooter. Now I have my own set of wheels so that’s what I do, but MOST of us are not abusing the parking.

  • Sally

    To qualify for disabled parking one’s walking ability must be severely limited. So much so that they cannot walk 200 feet. I don’t think those claiming to have invisible disabilities realize how restrictive a requirement severely limited is.

    The average walking speed of a human is 3 miles per hour or 264 feet per minute. If you have a normal gait with no visible signs of impairment you can walk 200 feet in 45 seconds. So anyone claiming they have an invisible illness where there are no visible signs of impaired walking are saying they cannot walk 45 seconds.

  • kelly

    I have m.s. (multiple sclerosis)..another invisible illness.. I also have lymphedema and although neither of which are lupus or Fibromyalgia.. I still feel your pain.. I am 38 years old and I am short and chubby.. I get stared at all the time.. :( I hate it.. As I know there are much better things to stare at in this world.. People seem to have nothing better to do than to stare though..

  • emmedullo

    This is a really great post and relays sentiments shared by most of us here.

    Reading through the comments though, I feel like I need to add something: I am a 16 year old brain cancer survivor, dealing with the long term effects of brain surgery, chemo, and radiation. After my diagnosis and treatment at 10, I have spent the last 6 years in rehab/physical therapy, relearning how to do EVERYTHING! Several of you commented below that, when asked by strangers what is wrong with you, you say you have cancer “so people will leave you alone.” At best, that is insensitive, rude, and dishonest. Own your own illness or disability…please do not claim someone else’s! Because, just like I don’t know what it is like to have your illness (and wouldn’t claim to), you have NO IDEA what it is like to have had mine and the after effects that come with it. Be glad people are interested enough in you to ask what the issue is instead of staring at you with ‘that look’. Instead of viewing it as an intrusion, perhaps see it as a rare opportunity to educate somebody.

  • emmedullo

    As a 16 year old, brain cancer survivor dealing with limited mobility and fatigue myself, I find any excuse as to why somebody does something other than what their actual illness is to be insulting. I would give up just about anything to not have had cancer at 10. I’ve had to relearn how to do EVERYTHING! Be glad people are interested enough in you to ask what the issue is instead of staring at you with ‘that look’. Use it as a chance to educate them instead of viewing it as an intrusion. Really? Is it polite to say you have a particular illness when you don’t?

  • Court

    I’m 29 and diagnosed with FMS for the past 2 years and trying to work full time. I am the family’s bread winner. I don’t feel bad anymore asking for reasonable accommodations for myself. I have a key to elevators after hours, I have speech to text software, and I use the scooters at grocery stores if I need to in order to function at the best of my ability when it really matters. I don’t think it would be better to deny myself this assistanc from time to time and in the end need constant assistance because I made myself sicker pretending to be tough.

  • Sue Walker

    In my area all of the spaces are van accessible so all we can do is try not to take the last one.

  • Kitty

    People can be judgmental, but in my mind that is their problem, not mine. I am 52 but look much younger, and as many of you have said, I “look fine”. But if you were to see my back MRI you would wonder how I am able to get around as well as I do. I take pain pills through out the day, and get injections in my spine pretty regularly. I am trying to continue to work, and rather than going on disability, I have requested a handicap parking placard so that I can park closer to schools (I am an itinerant teacher), especially in the winter when it can be very difficult to find close parking in an area where I can get my wheeled cart out of my car and then take each item (I have a 10 pound lifting restriction) one by one out of my car and put them on the cart. Bending is especially bad for me so even this is difficult, but I want to work as long as I can. So, people who see me at work may think “what the heck how does she get that placard”, but if I did not have it, I would not be ABLE to work. I would be on disability. So, for those who get upset because a disability is not “visible”, would you rather have someone who appears healthy but has a placard because of a disability you can’t see and is working, or would you rather that same person just stop working and collect disability checks?

  • s

    Sometimes it’s better to have something visible, because nobody really understands the pain and suffering. I have fibromialgia, IBS, migranes that last for days, easily get infections, and get sick from cold temperatures, Air conditioning, strong smells, perfumes, and have a hard time with my daily life… Nobody really understands.

  • Susan Precht

    very good point

  • Discord

    That’s quite the diagnosis, Doctor Jon, from never having met the person in the flesh once. Here’s my diagnosis of you; you are a bitter person, clearly with rage issues and emotional disorders that cause you to gain satisfaction from bullying disabled people online. We all see through you, with a mixture of pity and embarrassment.

  • Discord

    Are you out of your mind? Do you honestly think that disabilities begin and end at two vast extremes; either waaaaay too sick to get up and drive and move around (and therefore I guess they don’t deserve to leave the house?) Or they are perfectly healthy and don’t deserve a pass. What on earth do you think a handicapped space is for? Those people that are in pain or have difficulty getting around but still want to live lives, that’s who. Are you really so self-involved that you would begrudge people a slightly better PARKING SPACE for their lives of chronic pain?

    And, as someone mentioned, you don’t have to be the driver to have the handicapped placard. My little sister has a heart condition, but she can’t drive because she’s only 15. My parents have the placard, because when they drive her anywhere they need to be able to pull up close to pick her up. So if you really are too weak to drive, that doesn’t mean you’re too weak to sit in a passenger’s seat.

    Are you disabled? It strikes me that all these people whining about who is and is not allowed to use handicapped spaces don’t tend to be handicapped people who want more spaces for themselves, they’re perfectly able-bodied individuals who just want to police who does and does not get the “treat” of a handicapped space because they’re secretly resentful that they are not entitled to it. You can clothe your bitterness in fake concern for others, but we all see it.

  • pattinb

    I too have a handicap parking.. As I age so has medical issues increased .. Heart Disease,,,, Hypothyroidism,,, Rheumatoid Arthritis …All invisible but just as handicapped as anyone else.. Lot’s of stares when I get out of my vehicle even when I am having a bad day .. if you took the time you would see my weight is because a doctor Judgingly said I didn’t look sick and refused me medical treatment, my hands don’t work like the use to I fumble to open the door because my doctor won’t prescribe me medicine for Rheumatoid Arthritis because I have Heart Disease.. I had a Heart Attack at 34 weighing in at 98 lbs 1 month before doctor’s said I was perfectly fine just stress not to worry my dear , just relax and you will be fine..Sometimes I don’t have the strength to pull it open.. Walking to far I am short of breath.. My fingers won’t bend around the handle to let me inside.. I use a cart as my walker so someone else can use the wheeled unites at the store.. I am slow but I will not let them keep me down.. Maybe people should walk a day in someone else’s shoes before judging the amount a person is handicapped.. Believe me…. It’s not by choice..

  • michela subjeck

    Just stay out of the “van accessible” spaces. I have a child in a wheel chair and have a ramp I need to deploy to get her in and out. That is what “van accessible” means. We should be classed differently, different color taqs or something.

  • Liz Piazza

    panheadvic- you are not alone, i am in the same boat also,one thing fibro demands of us is flexability in abilities, plans,etc.your life is just different.I pray u will find someone with similiar background to enjoy whatever about life you can.

  • tamsets

    Hi Sheryl!
    I am so glad to hear from you! It’s difficult to find others who have a good understanding of what life with chronic pain is like. Even more difficult to be a woman, not a former veteran with PTSD. We cannot control those crazy night terrors, nor the fearful memories that jump into our minds. I commend you for not using medications. I want to be free of mine!

    On advertising. My daughter has a website and uses a Google advertising source. I will ask her about it.

  • http://Sheryllsheavenlyhands.vpweb.com/ Sheryll Mayes-okerstrom

    iIts late her in Minnesota, so i better go to bed. Havent been sleeping good for about a month now, and havent been out of the house since the 8th of january. i think i have cabin fever.

  • http://Sheryllsheavenlyhands.vpweb.com/ Sheryll Mayes-okerstrom

    I just found my old blog space, and I’m up and running again business has been real real slow, no customers for over 6 months. i need to do more advertising, maybe you all can help me?

  • http://Sheryllsheavenlyhands.vpweb.com/ Sheryll Mayes-okerstrom

    Hi Tammy, i too have fibromyalgia , i dont use any drugs to help me, all i do is walk two or three times a day and do alot of stretches every day, and then hot showers at the end of the day. i also have chronic clinical depression, and PTSD battered wife syndrome and night terrors and im starting to shake with my arms and hands. i have a tens unit that helps me. its a muscle stimulater. so i try to take care of myself.

  • Carmen1409

    This is old but felt the need to comment. Jon, I’m a vet too. So your throwing out your Purple Hearts doesn’t impress me. They’re a dime a dozen these days. I’m sure you’re taking advantage of entitlements too. The VA, medical benefits, military retirement. Maybe you think you’re something special, but I don’t think you are. Service in the military is voluntary, so why should I feel impressed that you man up with your aches and pains that you knew were a probable risk when you joined while these people never asked for their disabilities? I don’t. In fact, I think people like you are a disgrace to the military. These are people you swore to protect and serve and you’re now telling them, they aren’t as tough and manly as you. They have more courage than you’ll ever have. Have fun hiding behind your Purple Hearts. a true hero would never flaunted his awards or achievements to put others down.

  • Carmen1409

    Maybe someone should create a judgemental and biased parking spot just for you and then you wont need the disabled parking afterall. Sorry to burst your selfish bubble, but just because you don’t have the same symptoms doesn’t mean that other people’s are invalid or an excuse.
    In Texas there are many reasons someone may need to use disabled parking. Placard and plate eligibility is based on a medical condition that meets the legal definition of a disability. “Disability” means a condition in which a person has:

    Placard and plate eligibility is based on a medical condition that meets the legal definition of a disability. “Disability” means a condition in which a person has:

    Visual acuity of 20/200 or less in the better eye with correcting lenses

    Visual acuity of more than 20/200 but with a limited field of vision in which the widest diameter of the visual field subtends an angle of 20 degrees or less

    Mobility problems that substantially impair a person’s ability to move around; these problems can be caused by:
    Paralysis
    Lung disease
    Cardiac deficiency
    Wheelchair confinement
    Arthritis
    Foot disorder
    Other medical condition causing a person to use a brace, cane, crutch or other assistive device.

  • tamsets

    Your comments are so uncaring and insensitive. I too have fibromyalgia, chronic pain and chronic fatigue and have days when I need that handicapped parking rather than parking hundreds of feet away. On the days I don’t have severe pain, I do not use it. I understand the importance of that space. Some of those able bodied people that you may be focusing on may be drivers for others that are handicapped rather than the handicapped individual. Unfortunately, spaces are limited and often only meet the state or local requirement for the ADA, while other more empathetic merchants provide much more. (Target, Walmart, Home Depot, are more generous than your local supermarket!) Perhaps you should not focus on the person parking there, but at the business at which you are patronizing.

  • Name

    I have Fibromylgia and I don’t have a problem walking 5 more feet to get into a store. I have lots of ills with Fibro and CFS and chronic pain but my legs still work fine. The handicapped spots are for people that can’t walk or are on walkers or in wheelchairs. It makes me mad when I bring my 91 year old client to the store and have to drop her off at the door because there are no more handicapped spots left. She uses the motorized scooter in the stores or her walker if she can’t get one. Then to see some kid park the cart and get out and walk out to his car parked in a handicapped spot without so much as a limp. If you can walk then you don’t need to be using a motorized cart or a handicapped spot. Your invisable illness is called “laziness”. Walking around the store is good exercise for us. Someday If I can’t walk I wonder if there will be any available spots for me?

  • jreamlover

    I am 34, thin and everyone tells me I look like I am 21. So when I pull into a handicap spot I get the nastiest of looks. I have even had people curse me out and or complain to store management and even one time called the police to try to give me a ticket. People look at me and just think I am lazy. Little do they know for 18 months i was in a wheelchair and couldnt walk. Now I have Lupus and ehler danlos syndrome where just turning in bed I can dislocate a joint let alone walking….I also get evil looks when I ride in the motorized carts at walmart

  • Joanne

    The rudeness of ppl today Julia … I confess, I’ve done it too – I’ve said “cancer, what’s it got to do with u?” just to make ppl stop & leave me alone ..
    Before I was too sick to work anymore, I was followed from the car park to the shops & accosted in the vegetable section by an elderly couple because I had worked 3 hours & was in my work uniform & had parked in the disabled spot with my pass … I hv Systemic Lupus (& the shebang that goes with it), Chronic Pain Disorder, MDD, CAD, Genetic Haemochromatosis, Sjogren’s, Raynaud’s (& asthma lol) .. I pointed out i have a pass & didn’t elaborate .. Then they had the cheek to ask if my car was registered!! Apparently, my rego papers had fallen on the floor, but they had checked my pass expiry dates & everything!
    I’m sorry to say, it’s all older ppl i hv trouble with, I respect my elders, but I’m guessing that because I’m 45 (& probably look about 35 cos i hv a round face) with an illness they can’t see, their suspicions go into overdrive…

  • Joanne

    I truly hope that u never hv to wake up in a body riddled with fibro, lupus, crohns, MS or any other “unseen illness”, leaving ur body as crippled as ur mind & heart. Ur own philanthropy will certainly not keep ppl around to help u.

  • Valari Elardo

    Thank you occifer, and I have had one since 2005 ;) Would you like to see my scars from failed surgeries ;P

  • Valari Elardo

    wtg! Hope you are in remission and holding <3 I think from now on I will start out saying I have 14 distinct diagnoses…then start listing them (using the Latin-I tend to get all Mensa when I am pissed off)…Like "Oh only let's see…spondylythesis, fibromyalgia, lumbar stenosis, facet joint syndrome…." Or hmm, .or maybe I should just start off with- "Hey, ever had bone chips floating around your spinal cord, hon?"

  • Valari Elardo

    Have no other life but to hate on people they know nothing about.