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

©2015butyoudontlooksick.com
  • Rhonda Worley-parsley

    For one, before my arthritis resulted in “bone on bone” kness with a torn ACl, meniscus, and every other structure torn, I could walk once I “warmed up” the various joints. I could follow the high school band as a parent chaperone. I could walk around the football field…but, if I sat down for 30 minutes, I had to go through the warming up period which was a bitch–but few people saw me walk until I was “warmed up.”

  • Rhonda Worley-parsley

    There was a time when I could walk without a visible limitation, but needed mobility devices due to a spine condition and the fact that without warning, my legs would go numb. I could be walking just fine and then fall–as in the fall down a flight of stairs, the fall in the back yard, the fall while washing dishes, etc. All which resulted in broken bones.

  • Rhonda Worley-parsley

    If a pain level is so obvious, then, pray tell, why does the pain specialist I see always, always, always ASK the patients their pain level?

  • Rhonda Worley-parsley

    People are issued permits for other reasons such as heart conditions or severe lung conditions…You cannot see those conditions.

  • Heather

    Then your doing the right thing. But keep in mind, when you can’t walk 200 feet it will be very visible you are struggling. This is the entire point of the people you are claiming are negative. When in fact, they/we are crusaders fighting to ensure disabled parking is available for those who truly cannot walk 200 feet. People claiming they have no visible limitation and can walk 200 feet but still need disabled parking are the ones we are being negative towards. Because they are the ones taking disabled spaces from people who truly NEED them.

    Hopefully you are on board with this crusade.

  • KatyMarie

    Thank you for your education. Haven’t good night .

  • KatyMarie

    In which case I qualify. I don’t have to justify my conditions to you or anyone else. When my mobility is fine I don’t use my handicapped parking, nor do I use the van accessible. I wish you all a good day. This thread is extremely negative and I wish to no longer engage. Again to everyone out there suffering from any disability ((gentle hugs)) . Goodnight

  • Heather

    If anyone is being ignorant here it is you KatyMarie. No where have I said invisible disabilities aren’t real or that people with invisible disabilities should not seek proper treatment. My cause and education of you evolves around the true legal qualifications for disabled parking. Which only includes people with SEVERELY limited mobility. People who CANNOT walk even 200 feet.

    It really is that simple, only time it isn’t, is when someone is trying to justify their disabled parking use when they don’t meet that simple criteria. They for whatever reason think that criteria doesn’t apply to them.

  • George

    Just pointing out if your pain is really that high, it will not be invisible. That’s like saying your level 8 pain is invisible when giving birth.

  • Larry

    Try being wheelchair bound and not being able to get in/out your vehicle because the “van accessible” parking spaces are all taken by people complaining of chronic pain. Even though they can still walk and a regular handicap parking spaces are open just one stall farther away.

    Need versus convenience/ease, simple concept that many can’t grasp.

  • OldMaidWhovian

    Some really bitter people commenting on here. Here’s something to think about: Try having chronic pain and NO or very little HEALTH INSURANCE! Try living under the poverty level–too poor to afford Medicaid spend down, too much money to qualify for total medicaid. So you do WITHOUT MOST HEALTH CARE OPTIONS–including pain control options.

    Stop whining and start APPRECIATING that you all can AFFORD A DOCTOR AND MEDICATIONS. I also CAN’T AFFORD A CAR–and HAVE to WALK!

  • KatyMarie

    First please don’t speak to me as if I am an idiot. Second. What YOU SEEMLY DON’T UNDERSTAND IS THE IGNORANCE of what YOU are saying. My mobility is limited, not always, in which case I don’t always use my handicapped parking. But when I am having mobility issues, YES I DO USE IT AS IS MY RIGHT. I am done having pointless conversation with people who know nothing about my day to day life and have no idea what it is like to live a life I would never wish on anyone. I have been evaluated by MANY Dr’s ALL of whom are MORE QUALIFIED THAN YOU to make decisions about MY health and MY care. Please continue you’re campaign of ignorance and uneducated assumptions and judgements so that the stigmas of invisible disabilities continue. It’s people such as yourself that hurt people in need in the long run. It’s people like you who prevent people from seeking proper treatment.
    I will continue to advocate and speak for those who suffer from invisible disabilities, to drown out the hatred, judgemental voices from those such as yourself. Good day.

  • KatyMarie

    Wow, then I guess you know my pain. My body & my conditions better than I do. There really is no point in arguing with any of you. The fact is you will NEVER GET IT until god forbid, you yourself are subjected to an illness that changes your entire life. I truly hope you never have to experience that. As I commented on anothers argument, living with chronic pain is something I have to live with. Although my pain scale may seem unlikely to you, well you don’t know me, live with me, nor do you have to assist me. I have no choice but to live like this, yes I go to PT, do water therapy, all under the supervision of my therapist. I’m not allowed to go work out, or carry over 10lbs. I have to have someone with me most times I am out. I never asked for this, I certainly don’t appreciate nor need the judgements I get from those around me. Living with an invisible disabilities is hard enough. Having to put up with the stigmas that come with it, just adds to my stress, emotions and self esteem. Yes I have attempted suicide more than once. You think I want to live like this? Thank you so much for educating ME ON MY PAIN, ILLNESSES AND DIAGNOSIS! Truly you have made me a smarter person. Have a good day

  • George

    Pain scale numbers are very subjective. However, most scales will say 7-10 is severe and so disabling you cannot perform daily activities independently. For example, a pain level 8 is described by some scales as:
    “Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.”

    If your pain is truly at an 8, there would be visible signs. If you become accustomed, numbed, to the pain. Then it’s no longer a severe 8 but more like a moderate 4. Where 4 is defined as:
    “Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that.”

  • Heather

    What you seemingly don’t understand is what pain level or illness someone has doesn’t matter at all. The only thing that matters is that their mobility is severely impaired. If you have a pain level of 10 but still have no limitation why would you need disabled parking? Conversely, if you only had a pain level of 1 but your mobility is severely limited you would need disabled parking.

    I guess I would as you what is your definition of “severely limited mobility”?

  • Jeri

    You don’t think drs are judgmental? Or sometimes: make mistakes, are wrong, are corrupt, ….

    Pain prescriptions is an easy to relate to area where some drs over-prescribe or outright lie to give patients what they want. Disabled parking is no different. In fact, over-prescribing disabled permits if far more prevalent than over-prescribing drugs. Simply because drug prescriptions are far more regulated.

    If you don’t think this is true, then your totally unaware of the true abuse and fraud within the disabled parking system.

  • KatyMarie

    Actually it is.. Yesterday I was at the store. I did not bring in my cane, An elderly woman dropped something and as a natural reaction I bent to pick it up for her, BAM there goes my back and it spasmed out of control to the point I was on the floor and could not get up. That’s the thing with an invisible illness, one minute you are fine, the next on the floor not able to get up and an ambulance on the way The woman I helped also used a cane and did not bring it into the store… We both laughed about it later, as she was kind enough to accompany me out to the ambulance. (I did not got to the hospital), but we both agreed leaving our canes in the car probably wasn’t the best idea. When I walked into that store I was walking fine, yet my pain level was still 7/8. How do I function with that level of pain?? I have NO OTHER CHOICE. So I am astonished that you are qualified to make that decision based on your ignorant comments.

  • KatyMarie

    I am glad you see it that way. However, having pain on a level 8 is normal for me, I don’t ALWAYS use my cane, I don’t always park in the handicapped spot either. Nonetheless, by MANY people’s “norms” I don’t look sick, I have even been accused of having my cane as a “prop”. I hear all too often, that but you’re so beautiful, young, you can’t be disabled. Why can’t I be? 2 1/2 years ago a woman who failed to stop at a stop sign took away my life, to this day she has no remorse, yet I have had to learn to live again. So maybe my comment isn’t what your talking about, but the looks and comments I get from people who see me I AM ONE OF THOSE PEOPLE WHO DOES NOT QUALIFY to them.

  • Chris

    Hope ur doing better

  • Chris

    Thats begining for me now gentle hugs

  • Chris

    Thank you for that googled information but never the less it still the drs who decide and not people who are just judgmental….

  • George

    Walking with a cane is not invisible. Having a pain level of 8 is severe debilitating pain. That level of pain is very visible. The people we are complaining about are people using disabled parking who have no visible limitation while walking farther than 200 feet. Which by definition does not qualify one for a disabled parking permit.

  • Jeri

    The federal guidelines word it as such, “Cannot walk two hundred feet without stopping to rest”. Most states follow the federal guidelines due to reciprocal agreements. And yes, most Doctors do not know this. And it’s actually not the Doctors or the DMV that word the qualifications. They are state statues worded by and voted on by your state legislators.

  • Heather

    If you can’t walk 200 feet without rest then Godspeed to you. You more than qualify and I wish you well.

    There’s just so many people, the vast majority of disabled placard holders, that can walk further than 200 feet. And it is those people who are cheating the system and blocking people like us who truly need to space.

  • Chris

    Actually that is exactly what im getting looked at for but mines the one that starts in the 30s

  • Chris

    Oh I didnt bother listing all my problems but no I can’t walk even 100 ft and actually that sounds about what im gettimg checked for in august its to do with my spine but either way we cant switch places thats the point I got approved because I meet the qualifications set by the government or whoever I dont need to meet anyone elses qualifications

  • Heather

    If you can walk over 200 feet without rest your don’t qualify. And if you want to swap illnesses/disease I would in a heartbeat. Look up Spinal Muscular Atrophy and tell me you still want to switch.

  • KatyMarie

    I’m 34, suffer from Fibromyalgia, CFS, Neuropathy, Narcolepsy, RLS, Ulcerative colitis, ALL OF WHICH YOU WOULD.never know by looking at me. Do I use a handicap spot everytime? No, but on days when the pain is high or I have a long day, you bet I do. People who either 1) Judge 2) refuse to educate themselves or 3) are just mean intentioned are the most ignorant. These illnesses have affected EVERY aspect of my life, my family’s life and friends. Not only do we have to comes to terms with loosing your former self/life, we also have to deal with the ignorance of people like yourself, and others who are just mean. I wouldn’t wish this on my worst enemy, but there are times when I wish for one day those who are so quick to judge people with Invisible disabilities for you to be in my shoes on any day. My good days my pain levels are an 8, fatigue, memory loss all day everyday day. On my worst days I have been in so much pain that I couldn’t even make it to the bathroom, I have someone who helps me, but there goes my dignity. So until you or ANY OF YOU who judge us walk in our shoes or someone you love dearly suffers from an invisible disabilities please educate yourself before you reign judgement and open your mouths. The hatred from so many of you breaks my heart. Just because you don’t “see or understand” something doesn’t mean it doesn’t exist.
    There are people who abuse the system, and YES IT ANGERS ME AS WELL, but not everyone abuses the system, and believe me walking with a cane at 34 is not glamorous. So please stop the judgement, the stigmas and PLEASE STOP THE HATE. to all those who suffer ((gentle hugs)) & butterfly kisses, the rest of you will be in my prayers so that you might find understanding & tolerate in your hearts to seek more education of the things you don’t understand. Judgement is a very negative trait to express.

  • Chris

    Actually thats no how the qualified drs or the dmv who made the applications word it… but hey u.must be more educated then them js

  • Chris

    Wow clearly I should have read the past comments. If I had the option of plugging u in a simulator hooked to me oh I would lol cause ur ignorant and clueless after 5 seconds youd hit the ground screaming 911 personally I really dgaf if you belive me or ur momma belives me. My highly qualified drs do so thats that but hey if ur jello over my parking spot ill gladly let u have it and my fibromyalgia……

  • Chris

    Some of what people

  • Chris

    Amen I was diagnosed in 1999 and also had all 18 points just got my plaque last week .im only 36 ,&,110 lbs but the looks I get just make me mad

  • Heather
  • Jeri

    And by specific guidelines you do mean that your unable to walk 200 feet without rest. Not just sometimes, but always. Right?

  • Amy C

    I can understand that. I do try to give people the benefit of the doubt when they do look sick. I use my placard only on days I feel like screaming just to walk (I havery a list of nerve, muscle and joint issues caused by an injury and surgery). I always hav a slight limp (even on “good” days), but people still make remarks or give dirty looks. It is hard when there are so many issues people deal with. I wish we could all have a magic wand and be free of our restrictions all together!

  • jackie

    I am 50 yrs. old. I have bone on bone arthritis in my knee and bone spurs in my ankles. I have a handy cap parking sticker. someone slashed my tire because I did not look sick enough. He should have waited until after my shopping when I was practically crawling to my car after shopping , when I have used up all of my spoons. The Doctors fill out the handicap parking applications, by following the specific guidelines . I can’t believe the haters out there. If a doctor filled one out for you, use it.

  • Heather

    Doesn’t take a rocket scientist to determine if someone can walk 200 feet without rest. I’m astonished at how ignorant some people are.

  • Heather

    Sophie must be a medical doctor. Seems she knows everything about disabilities and who qualifies for disabled parking. NOT.

  • Heather

    Hi Amy C, yes it is very difficult and frustrating when I can’t find a parking spot to unload my power chair. Knowing full well many of the people who took a space I need walk with no apparent difficulty.