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

©2024butyoudontlooksick.com
  • Tory

    If your not lying, then why haven’t you gotten a mobility device? And why hasn’t your doctor, physical therapist, occupational therapist, …, prescribed one for you? If anyone is trolling it is you.

  • Nonny

    Are you just a troll, or are you really that ridiculously stupid? You accuse me of not being sick enough, so I try to explain to you what it’s like for me. Then, instead of realizing you might be wrong, and trying to learn something, you accuse me of
    lying! You are very wrong, you are very rude and you are very ignorant. You have no clue what you are talking about.
    The entire reason this site even exists is to give support to people like me with invisible illnesses, who may feel that others do not believe or understand how sick they are. Yes, we ARE this sick, and no you never realized it. Because we don’t look it. You are clearly not one of us, so why are you even here? To just troll around and upset sick people? Shame on you.

  • Nonny

    “The arrogance here is claiming someone who cannot walk 200 feet does so
    without limitation 0 to 199 feet and then suddenly at 200 cannot walk at
    all.” That’s not what I said at all.
    You’re a master of glossing over what the other person is actually trying to tell you, then giving a long, detailed explanation as to why what you are mistakenly claiming the other person to have said is wrong. You’re not interested in learning anything about disabled people or new thoughts, only that you are so right. Which you’re not. So I’m done.

  • NoOptions

    Almost all joint, muscle, ligament type pain/stiffness is very noticeable when someone first starts walking. Once their joints/muscles/ligaments warm up, stretch out, get re-lubricated the symptoms ease and remain eased until prolonged (multiple minutes) usage fatigue starts setting in. Keep in mind it only takes 45 seconds to walk 200 feet if you have nothing impairing your gait. This is your typical mild to moderate arthritis type symptoms.

    Now if your condition has advanced to a severe or acute level, then you wouldn’t have an easement after warming up and would exhibit visual signs of impairment constantly.

    In either case you would exhibit immediate visual signs of impairment if joint/muscle/ligament pain/stiffness was your disability.

    Now if endurance or fatigue, not pain, was your only limitation then I would agree it may not be immediately visible. But here again, we are talking about cannot walk 200 feet. Which means you would begin to fatigue way before you reached 200 feet. It’s not like you would walk totally normally and than instantly not be able to walk anymore. You would be showing signs of fatigue shortly after starting to walk, probably within 10-15 seconds. Keeping in mind a normal gait only takes 45 seconds to walk 200 feet.

    The arrogance here is claiming someone who cannot walk 200 feet does so without limitation 0 to 199 feet and then suddenly at 200 cannot walk at all.

  • Terri

    At 38, I’ve been living with AS (and related symptoms) for 15 years. I’m tall, slim, and look like an athlete…..but I’ve gotten really good at “faking it”. I park in the handicapped parking and get the dirty looks but nobody knows that every step feels like I’m walking on shards of glass and my spine feels like it will explode from the impact.

  • Tory

    Well, now I know your are lying and faking. Anyone in the situation you described would get a mobility device, like a powered scooter, so they could continue to enjoy all the things you say you can’t do. Sorry, but if your walking is truly that limited you would have already sought out devices to aid you. I’ll chalk this up as yet another “invisible” faker who uses handicap parking merely as a convenience. Then lies to justify their usage. I’m actually quite tired of these lame excuses.

  • Nonny

    Beth, if you have so much research and data and proof, then how about you go tackle the problem of actual fraud, instead of harassing and accusing people who actually need their permit?
    Because so far all you’re saying is that anyone who is simply less handicapped than you, MUST be committing fraud. That’s not correct and it’s not fair.

  • Nonny

    And you sound like an ignorant, judgmental prick.
    I have a chronic condition which causes widespread pain and fatigue all day, every day. I DO NOT have any magic “good days” where I can walk more than 200 feet without rest. My condition is permanent, every day, every hour, not “sometimes”.
    I read this article and decided to add to the discussion, because I look young and and some others have expressed their concern that people might think they don’t really need it, based on their appearance. You don’t know me, you don’t know how much pain I am in, how exhausted I am, or how many
    pills I take every day, just so I can get out of bed and go to work every
    day. But you decide to accuse me of faking it, of not really needing it.
    I don’t even use handicapped spaces often. Not because I don’t need it, but because I don’t GO anywhere besides to and from work. I have my groceries delivered because I can’t walk long enough to get through the whole grocery store. I don’t go to the mall or department stores anymore. I do everything I can online. So who are you to read two sentences that I’ve written and decide that I don’t really need it, and that I don’t care about anyone but myself?

  • Nonny

    You can’t tell how much pain I am in and how long I am going to be able to remain upright just by watching me walk a few steps. Are you going to follow me around the store to make sure I am limping enough for your satisfaction? Arrogant prick.

  • NoOptions

    You think you can’t judge a visual function? Let’s take a visible function like blinking. Your telling me you can’t judge if someone is blinking normally by looking at them? It’s no different than judging if someone is walking normally by watching them walk. Well, if you have no cognitive skills you couldn’t. Apparently that is your disability, cognitive dysfunction, since you can’t.

  • Beth

    Of course of have done research. Obviously you have not. I’d also suggest you look up the definitions of “some” and “few” and then consider that half a million or more people have handicap permits in each state. Even if only 1% of 500,000 exaggerated their symptoms or doctor shopped that would be 5,000 people. I’d call 5,000 of anything many, wouldn’t you?

    And here’s another little tip/clue for you. 1% is way lower than the actual amount of fraud. Do your research!

  • Tory

    Sounds like you don’t give a rats ass about anyone but yourself.

  • Nonny

    So, after I’ve worked all day, am physically exhausted and my hips, legs, and back are severe pain, and I absolutely have to stop at the store on my way home to just pick up one or two things: if I park in a handicapped spot with my permit, exactly HOW MUCH of a limp should I have before you deem me sick enough to park there?

    I am in pain and fatigued every day of my life. Some days I can hide it better. Just because you don’t see me limp, doesn’t mean I’m not in very bad pain. Or that I can park far from the entrance to the store, waste the precious steps I have in me, and still last long enough to run my errand.

    Don’t propose that you know for fact that, “the majority of people parking in a disability spot can walk farther than 200 feet at the time of parking.” You are guessing. You don’t know that.

  • Nonny

    Really, Beth? You’ve done research? You know as fact that “many” permits are given out that are not needed? Not just “some” or “a few”? “Many”?

  • Nonny

    I rarely would be able to walk 200 feet without rest. Did you miss the part where I said that I NEED IT? If I do not NEED it, I will not USE it.

  • eyesonprize

    Wow, I just read down through some of the comments, and the spectrum of opinion on this is amazing! There is clearly a big difference amongst us here, all of whom seem to have some amount of illness, so it’s no wonder there is confusion, assumption, judging, etc, between those who are in good health and those of us who are not! I have the perspective of someone who graduated college before the passage of the Americans with Disabilities Act, apparently– don’t quote me on that, all I know is, for most of my life, as someone born with spina bifida, there was no such thing as ‘handicapped parking’, automatic doors, modified bathrooms, and the like– which, turns out, has not been entirely bad, because I learned a lot through that experience and, actually, am just thrilled to have handicapped parking available! This may seem rather pathetic, in a way, but it is nonetheless how I feel, and although I would not wish that experience on someone else, I now find myself feeling pretty blessed. One thing I do know is, when someone has health problems, one of the worst things they can do, to their own detriment, is to live in a mode of comparing how their own health stacks up against other people’s and then, based on their own analysis (i.e., assumptions), make all kinds of conclusions about how *someone else* *should* feel and whether or not the other person has a *right* to complain, are as bad off as they are, etc. No two people on this planet are exactly the same. Since the end of the post has in bold type “Now, if I could just get people in parking lots to quit giving me dirty looks…”, I would like to say that part of the problem, no offense, starts right there; it is to one’s own benefit to not assume what someone else is thinking, based solely on a ‘look’. While, yes, someone may be giving you ‘the evil eye’, they could also have any number of other things on their mind besides whether or not you deserve to be parking where you are. They could be feeling ill themselves! In my own opinion (emphasis on “my own”), it keeps one’s own mind in a more consistent state of peace to wait until one actually hears a negative comment, something that shows clearly what the other person is thinking, versus making a painful assumption about it. And, actually, a pleasant surprise is finding out that someone who is scowling is actually doing so because they have a heart for people who are disabled, and in one sense, may actually be a more caring person than the person that appears utterly clueless or doesn’t *look* like they’re being judgmental. For example, say someone is scowling because they have a sister who is disabled, and then they see someone pull into a parking space who, in their own mind, doesn’t appear to deserve to park there– not in comparison to someone like their sister anyway, not to them. So then they give the person parking a frown. In actuality, they aren’t such a bad person, because in their own way their heart is taking up for people like their sister. Are they ignorant to the plight of others who are *not* like their sister? Yes. But are they necessarily jerks. No. Just ignorant. And yet, yes, they may never learn. In their own minds, it was so painful to watch the suffering of their sister that no one else could possibly ever suffer as much as their sister. See what I mean? Unless someone actually *says* something, it is better, for one’s own well-being, in my opinion, not to assume the worst…Now, if someone does says something presumptuous, that is entirely different. On the other hand, here again, this is an opportunity– if (*if*) you feel up to it at the moment–, to educate the other person. Do they deserve that? Do you owe them that? No. Is there a guarantee they will become enlightened at that moment. Possibly not. Nonetheless, it is an opportunity that may plant a little thought that will help them learn, in time. If there is anything I have learned that has been, ironically, both disappointing and liberating, it is that the world does not revolve around me. It can be tempting to assume that someone is being judgmental based on the look on their face, but it only ends up being unhealthy for oneself, in the end. Having a disability, if you live long enough, is a marathon, so to speak, not a sprint. At the risk of sounding pompous, try to just take a breath. There is no one on this earth, no One, no human being, who will ever truly understand your internal struggle. We’re not designed that way. If all of the intricacies of the rules about handicap tags are settled, that will still be the case, which to me, is the bigger challenge– and it takes energy, precious energy, just to deal with that. Try to take things one day at a time. For myself, I don’t know where I would be without my faith. But try not to let other people’s facial expressions dictate your level of frustration. This is a marathon…– Blessings…:-)

  • Tory

    If you can’t walk 200 feet without rest at the time of parking then yes you should use your permit. If however, you can walk 200 feet at the time of parking than you should give a rat’s bottom about those who cannot and not use your permit.

  • Nonny

    I have fibromyalgia. I am 46 years old and look even younger, and I have a handicapped parking permit. I know that I need it and I don’t give a rat’s bottom how anyone looks at me or what they think.

  • Beth

    Hate makes it worse. But fighting to ensure needed resources, like disabled parking, are available for those that truly need them makes it better.

  • Her Holiness

    Perhaps not, Pag–those parents are clearly demonstrating some profound moral handicaps 😉

  • Her Holiness

    Congrats, Beth, you win the disability contest!!!

    For the record, I’m sure there are people whose medical issues trump yours, and who have somehow managed to retain a little more humanity than you. I’ve known a few people who have lost their health struggles and displayed leagues more empathy, compassion, and forgiveness throughout their illnesses.

    I’m sorry your life sucks. But hate doesn’t make it better, does it? Blessings.

  • Franklin

    Actually, they are very easy to acquire. Take a qualification like “cannot walk 200 feet without rest”, which is a very subjective qualification. This qualification isn’t tied to any specific illness nor requires the use of any mobility device. A person can easily exaggerate their symptoms and qualify using this qualification.

    It’s not like the doctor is going to take out a long measuring tape and test you. The doctor is basically going to trust what you tell them. And even if they did test you, it’s easy to pretend your tired and stop walking after a few dozen steps.

    Having disabled parking placards and/or plates is not a guarantee the user qualifies. If you think it always does, your living in a dream world.

  • mtd1962

    I have lupus (SLE) I have been hospitalized 20 times and have had two neurological episodes that left me learning how to walk and use my right arm all over again during both of those horrible episodes I was in the hospital and in rehab for months. I never applied for disability because I feel when I am in remission I can work and be productive. Currently I am on 5 medications that give me mobility. I work full time but my doctor approved me to receive a handicap license plate and/or plaque card because though some days I am fine other days are a struggle. Because I am thin and appear fit I have been yelled at and cursed when I leave my car. It is really disgusting how ignorant people can be. I actually told someone I had a serious medical condition and was called a liar. People need to mind their own business and realize if someone has a handicap license plate or plaque card they qualified for it these are not easy things to acquire.

  • NoOptions

    I concur someone walking slowly is not a guarantee they have a severely limiting walking disability. But I stand firm that it is a “visible” sign they may have. A much stronger sign than if they were walking with a normal gait.

    But I can tell now your completely rambling on and have little to no understanding of why and who abuses disability parking. Almost everyone that is fraudulently using a disabled parking spot is doing so for convenience and/or free parking. They are not going to turn around and inconvenience themselves by walking slowly to their destination.

    If they were going to fake a disability, they could just as easily use an even more visible queue, like a mobility aid. But by now I think you understand why they don’t. It’s inconvenient to use a mobility aid. And the last thing they want is to be inconvenienced. God forbid they would have to park 10 stalls farther away from the door and take an extra 20 seconds to walk there.

    In short, get a clue.

  • Beth

    There is different disability parking for wheelchair use in the US. Unfortunately most people ignore the “van accessible” notice on the signs and park there anyway. Even when another non van accessible disability spot is one or two stalls away.

  • Melana Nighthawk

    I walk just as slowly frequently (due to hip/back/knee/leg/foot pain) – but I don’t need or use handicap parking.

    Someone who is not in a hurry walks slowly, “sauntering along”.

    If someone is young-looking but walking slowly, they cop a lot of abuse because it is ASSUMED that:
    1. They are too young to have anything wrong with them, the observer can’t see anything themselves, so they must be abusing the handicap parking, and
    2. They’re compounding their abuse by not even having the decency to get their stuff done fast and get out of there.

    Maybe you would recognise “walking slowly” as a symptom of a genuine need – most people don’t. And not everyone just “walking slowly” does have a need for handicap parking – so it’s NOT usually recognised as a “genuine” signal.

  • NoOptions

    And as I said, walking slowly is a visible sign. Thank you for agreeing.

  • Melana Nighthawk

    I didn’t ask you to walk in my shoes – I just explained the sorts of situations that cause someone who HAS experienced disability issues to wish it on someone else. Something you said flat-out meant that they’d never experienced “real” disability.

    I explained how someone could be genuinely unable to do something one day, but ok the next – something you said flat-out meant that they’d never experienced “real” disability.

    I also said that I do not and would not use disability parking, as I acknowledge that while limited I’m not limited enough to need it. I’m grateful that this is currently still the case. So your reiteration of your frustration about parking being used by other people was ill-targetted – I’m not someone who is (in your opinion) “stealing” your parking.

    So here’s the rub. I understand your frustration that as someone in a wheelchair, you genuinely need the extra space for maneuvering that disability parking provides. At no time would I even consider disputing that – I agree wholeheartedly that you should be able to use it, and can understand the frustration when there is none available because it’s already in use leaving you with no options at all. But unless there is different disability parking for wheelchair use verses other mobility use in the US (I live in Australia, and parking places for those are the same thing here), your genuine need does NOT invalidate someone else’s genuine need – even if you PERSONALLY do not immediately see why they needed it. If they have been medically assessed as genuinely needing disability parking, they have just as much right as you do to use it.
    Telling people that unless they’re as bad as you they have no idea what disability is, is simply another way of saying “walk in my shoes”.

  • Melana Nighthawk

    My mother in law died from cardiomyopathy, so yes I have seen it at the point at which it was severe enough to kill someone.

    Yes, she walked slowly – people assume that just means that someone is not in a hurry/taking their time.

    You’d have to have followed her for 30-50m to see the issues with shortness of breath. At 100m, she couldn’t stand anymore and would have to rest. But that WASN’T visible the moment she got out of the car – where she would have been sitting quietly for a while with consequently much lower demands for oxygen.

    I got to hold her hand while she was suffocating on multiple occasions – where nothing but morphine (because it reduces the body’s recognition/demand for oxygen) could help. But unless one of those attacks was currently active, it would not be visible immediately on standing up, or for the first several metres of walking.

  • NoOptions

    Apparently you haven’t ever seen anyone that is actually winded, struggling to breath. There are numerous visible signs, one of the most common signs is a slow gait which conserves energy and uses less oxygen.

    When oxygen levels do get low, visible symptoms can be but not limited to: wheezing, coughing, shortness of breath, rapid breathing, sweating, …. Think of someone having an asthma attack, which is very visible.

    If someones lung or heart condition is minor, I agree their symptoms will be invisible. But at that level of impairment they would not require handicap parking.

  • Beth

    And after all that I can still confidently say your blight pales in comparison to those who deal with ADL dependency issues every waking day, hour, minute, second of their entire life.

    Then on top of that they have to deal with people who have invisible disabilities that take the last van accessible spot while having no apparent walking limitation, i.e. they walk normally.

    Yes, I would love to walk in your shoes.

  • Melana Nighthawk

    “On that particular day you will not be walking normally. There will be visible signs you are struggling”

    What about for people with things like pulmonary hypotension, cardiomyopathy, interstitial lung disease – i.e. for which their heart/lung system is UNABLE to support the activity.

    That doesn’t show up as “visible signs in their walking” , but is just as real a reason for being unable to walk any distance.

    My husband knew someone who’d had to have a lung removed. They’d never been a smoker (though most people automatically assumed that he must have been – that the problem just HAD to have been self-inflicted). He literally couldn’t get enough air to support any real exercise because he’d lost just over half his lung capacity. Yet he also frequently got abused by people assuming that “you look young and ok, you’re not limping – you MUST be using a fake permit because *I* can’t see anything wrong with you”.

    Invisible illness/disability is called that specifically because it’s not immediately visible.

  • Melana Nighthawk

    The people I know who have broken out the statement “walk in my shoes” have usually used it in regards to other people who continually and repeatedly dismiss and deny any and all of what they have been going through, and leave them to live in hellish pain, fatigue and misery while telling them that “they’re just not trying hard enough” and “they’re just making it up” or that they’re doing it to themselves “it’s just posture/fitness/stress”.

    There are some doctors I know that I *would* wish it on – so they could bloody well experience for themselves what they callously ignored, dismissed and left untreated in others because they were *so* *sure* that someone was just a hypochondriac/neurotic, that there was not anything actually “real” and so had never even *bothered* to test anything.

    I’m pissed off at the GP who told my husband that his breathlessness on lying down, continually waking up suffocating, and extreme exhaustion was because “he thought about his body too much”, that he should learn meditation to control his heartrate, and that he should just ignore the symptoms he was getting. He had severe atrial fibrillation – and that GP’s “advice” almost killed him. Yes, I would like to see that GP experience what he dismissed so blithely.

    The GP that told me the pain I experienced daily was “just posture/fitness/stress”, the fatigue was “just sitting down too much”, the sleeplessness was “just not trying hard enough”, the gut trouble “no idea”, the nerve pain “just body being tired from not sleeping enough” or a “consequence of not enough exercise”, etc – leaving it all UNTREATED, and spent 22 YEARS dismissing everything out of hand, before bothering to test for anything…and then LIED about the test results (hiding the positive result for an autoimmune condition) – yes, there are times that I bloody well would wish on them that they personally experienced what their callous disregard and dismissal has done. Including the scarring of nerves in legs/feet that mean that the skin feels permanently scalded/burned…scarring that could have been prevented/reduced had treatment started 15 years ago when those symptoms had first started.

    I’m pissed off at the nurse who left my husband’s mother who was in hospital in the last stages of cardiomyopathy to suffocate for 15 minutes, because the nurse didn’t understand that the problem wasn’t the blood oxygen level itself but the fact that her heart wasn’t capable of pushing the blood around the body, so the body wasn’t *getting* the oxygen it needed. The nurse wouldn’t believe her about what medication she had previously been being given (“oh no, you must be mistaken dear”), and COULDN’T BE BOTHERED to read the patient chart at the end of the bed that would have confirmed it, so the nurse left her to suffer from the body’s panic caused by lack of oxygen.

    And no – I don’t have a parking permit, nor would I apply for one at this stage. On a good day, I can walk several kms (with a lot of pain, but it’s still possible). On a bad day I can barely walk to the toilet and back, and cannot lie down or stand up without excruciating pain. Fortunately, my good days still outnumber the bad ones – I can still work part time and can put off the shopping to a day when I can walk, so I don’t need to consider disability parking at this stage. There are days where I get to work, and then find I cannot get home – I need to organise someone to collect me because I cannot walk the 2 blocks to the station to catch a train because pain has flared severely during the day.

    Autoimmune stuff is a *bitch* – it varies randomly, and people can be genuinely “ok” one day, then fighting for their life in hospital the next, and back to “ok” a month later (where “ok” for them would normally have someone thinking they had the flu)…and unlike being in a wheelchair it is usually NOT immediately visible. That then causes a lot of them to experience a lot of dismissal and denial from other people that they “couldn’t possibly” be experiencing what they actually do experience – and the “walk a mile in my shoes” is usually born out of the frustration felt when their experiences are constantly dismissed and invalidated. People (including you based on your comments) find it difficult to understand that just because something is possible one day doesn’t mean that it’s possible the next – and also doesn’t mean after a time of it not being possible that won’t become possible again some time in the future.

  • DavidRockies

    I’m hoping that others will take the time to read and share my story.

    Because of my ‘invisible disability,’ and a group of people who convinced the Fort Collins authorities that there was nothing medically wrong with me, I have lost absolutely everything.

    http://nbeener.blogspot.com/2014/11/the-destruction-of-medically-disabled.html

    THIS … is what can happen when people don’t believe you’re medically disabled.

  • Beth

    Rupert, I wish I could still walk a few extra spaces in the parking lot. I am currently confined to a wheelchair and require assistance with simple daily activities like toileting, bathing, and getting in/out of bed. It always amuses me when people break out the “walk in my shoes” statement. The only people I know that use that are ones that don’t really understand what a true disability is. For if they did, they would never wish their blight onto another. I truly hope you never have to experience that level of disability.

  • Rupert

    May you NEVER get sick or become disabled Beth. If you do, you’ll probably eat crow and choke half to death on your own words. I , like most others was once healthy too ( as in also). That means I didn’t need a handicap spot either. BUT, WITHOUT NOTICE OR WARNING, BAM!!! A STROKE!. Followed 3 months later by another one, then a bout of bladder cancer, and NOW, Pancreatic Neuroendocrine Cancer ( like Steve Jobs had, Google him if you don’t know who he was). To this day, by the grace of God, I LOOK PERFECTLY FINE !!. There are good days, and not so good days, trust me. So, rather than waste precious time prejudging others and their journey through life, perhaps you could go and walk the few extra spaces in the parking lot, while you still can. Thank the good Lord above that you don’t need a placard, YET. Have yourself a great day. I just wasted these couple minutes on your ignorance, when I could have been enjoying what’s left of my life, or helping someone in worse shape than me.

  • KittyKat

    It never ceases to disappoint me of the judgements healthy people put upon people with disabilities, especially invisible ones. I know it comes from a place of ignorance or more sadly a lack of compassion and empathy. I feel sorry for them. I am a kind, loving, compassionate and warm-hearted person. I know in my heart I dont judge them for being able to walk or not be disabled!!

    To all my compradres out there, the next time someone gives you a dirty look for parking in the handicap spot, just do what I do give them the biggest smile! It will drive them crazy. If they have a nasty comment, I calmly and nice as I can invite them to call the police, as my placard belongs to me, is legitimate and needed. Also I have the paperwork in my vehicle to prove it. I do my best to laugh it off and move on with my day. I know, the reason I am out running my errands is because it’s the first day in a long time that I’ve been able to do so. I won’t let their ignorance or lack of symathy ruin my day.

  • k7dfa

    I’m in the “invisible illness”, (Crohn’s), category AND the “visible disability” category, with no need for a wheelchair, (YET). But when I need the restroom, I NEED IT NOW, WITH NO TIME FOR F~@KING AROUND WITH WHICH SPACE I CAN/SHOULD PARK IN, and in a lot of cases with barely the time to make it to the, (restroom), facility when parked in the closest space I can find!

  • Wood

    ADA law already has regulations for two kinds. ADA requirements call for 1 in 8 disability spots to be van accessible. A van accessible spot must have an 8′ access aisle and have a “van accessible” on the disability parking sign. Non van accessible parking spots must have a 5′ access aisle.

    8′ is required for unloading larger mobility devices like wheelchairs and scooters. There needs to be enough space to accommodate the length of a ramp/lift along with space to drive the mobility device off the ramp/lift and turn.

    5′ is required for unloading smaller mobility devices like walkers, crutches, canes, etc. Or for those requiring fully open doors to enter/exit their vehicle.

  • Phyllis Anne

    Honestly, I don’t believe there is a good solution for so many things out there that the disabled or chronic pain patients have to draw from. It seems that no matter what, not all can be made happy. It’s a quandary too, to even try to get along and get proper treatment.
    I am disabled, but I can still walk even though sometimes it’s painful and maybe a struggle. I park as far away from entrance as I possibly can, just for the extra exercise that I need to keep going “somewhat” strong.

  • barbershop_quartet

    Then there wouldn’t be the complaints from people in wheelchairs who need the ramps, wishing the people who can walk would park somewhere else. I’ve met a lot of people with cancer or some other non-visable disability claiming they have every right to park there.

  • Phyllis Anne

    I don’t think I could/would ever get to a point of confronting anyone using a placard. So many disabilities are not visible unless the confronter is carrying an xray machine or blood lab test equipment with them.

  • Phyllis Anne

    Now that’s a good idea. Hopefully, maybe, someday, it could happen. I’d be all for it.

  • feduptoo

    Finally someone speaks the truth! I too I’m way tired of the “invisible illness” excuse. If your walking normally with no visible sign of physically struggling then guess what, your walking isn’t impaired.

  • Homer

    Police in most areas do not actively patrol and enforce parking lot laws. They typically only get involved when a citizen reports an issue.
    For lawmakers they want to see proof of fraud before going through the process of reform. Part of this proof comes from reporting/confronting as many cheats and fraudsters as possible to show a misuse pattern.

    If we do and say nothing then nothing will change.

  • NoOptions

    It’s not a matter of comparing illnesses or disabilities. It’s only a matter of ones functional ability to walk. If you can walk normally for 200 feet at the time of parking, you shouldn’t be parking in a disability spot. It’s as simple as that. Unfortunately the majority of people parking in a disability spot can walk farther than 200 feet at the time of parking.

    If your having a really bad day and can’t walk 200 feet that day then go ahead and park in disabled parking. On that particular day you will not be walking normally. There will be visible signs you are struggling and no one will question your use of the disability parking.

  • Beth

    The reason for bringing it up is because it happens often. You yourself readily admit you don’t need yours. Even going so far as saying when you think you need it you will still give it up for someone that needs it more. Which basically means you never truly need it.

  • barbershop_quartet

    I think they should have a Two kinds of parking spots for People with Disabilities. The existing ones that are extra wide with a ramp up onto the sidewalk for people using wheelchairs, walkers, etc, and then…. ones that do NOT require extra wide parking slots for assistive devices.

  • Parker Foster

    #2 it may not be illegal to confront someone, but it is incredibly rude!

  • Parker Foster

    take it up with the lawmakers then and leave the policing to the police. not worth making disabled people feel worse about their conditions especially when it isn’t obvious to everyone else. it is not anyone’s business.