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
  • 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.