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
  • chris

    Everyone must stop judging. All I can think if is my dear mom with stage 4 cancer that refused to get a HC placard out of pride. She missed out on things her last month’s due to this. And the times we took her places and had to drop her and leave her at the door – leaving her alone for 10 minutes while we parked – she was so very sick but probably just looked old. We never knew how she would do those 10 minutes. And no one would know it was the cancer that had aged her 20 years and she would die in 3 months. A placard would have helped her enjoy her last months more and kept her safer as we could get out of the car with her and stay with her.

  • Colie Marie

    I cannot believe the rude remarks from you “adults”. It is none of your business weather or not we use handicap plates/ tags. I am disabled, Im 25, with fibromyalgia, and I sure look like im not sick. But I am in excruciating pain 24/7. I am going to get a handicap tag for my car, because I cannot walk far in the city, in the freezing cold. If I did that, it would be the only thing id do that day. So spare your rude comments, and why dont you people who are so judgemental, go pick on someone whos not disabled, anf grow the hell up.

  • Wood

    Ken, there’s a few things with your video that are misleading and many things missing.

    First the misleading parts.
    1. Not everyone using a disabled placard or plate has legally obtained it.
    2. It’s not illegal to confront someone.
    3. It is illegal to punch someone.
    4. The DMV is only an administrator. They do not have any say on who or who does not qualify for a disabled parking permit. They simply insure the form is properly filled out and signed/dated.
    5. Police are not always the only authority that can issue disabled parking violations. Some communities have trained civilian volunteers that also perform these duties.

    Now the missing parts.
    1. You do not mention the rampant fraudulent use of disabled placards/plates. The #1 fraudulent use being the use of placards/plates by people that were not issued a placard/plate.
    2. You do not mention any of the many ways to fraudulent obtain a placard. Many of the qualifications are subjective and applicants can use that to misrepresent themselves to a physician. Some doctors will not take the time to fully understand and quantify the qualifications. Applicants can doctor shop for physicians willing to sign, similar to doctor shopping for prescription medication. Applicants can forge physician signatures. Or people can fake, steal or illegally purchase a placard.
    3. 100% Disabled Veterans can also receive disabled parking privileges. This is noteworthy because DV percent ratings are not limited to mobility impairments. A veteran could receive a 100% disability rating and not have any mobility impairment. For example they could have a 100% rating due to PTSD.
    4. You do not mention the difference between van accessible disabled parking and normal disabled parking.
    5. This is a harder one. But you yourself do not take on the task of quantifying the criteria (1, 3, 5, 7) you chose to highlight as possible invisible conditions. Not quantifying these subjective criteria is one of the main reasons average citizens and physicians will approve or disapprove (judge) an applicants eligibility differently. Or more simply said, if the same applicant went to 10 different physicians with (1, 3, 5, or 7) they would probably get varying approval results.

  • Fed up with invisible illnesse

    I agree.

    I have chronic pain in both legs due to Fibromyalgia, and osteoarthritis in the knees after getting hit by a car while cycling a few years ago.

    Although I am in chronic pain all day, and can hardly stand for more than 10-15 minutes at a time, I know I do not qualify as “handicapped” due to the 200 foot rule and don’t want to put someone, like my grandmother, in a wheelchair at a disadvantage just because I feel like parking closer sometimes.

    It also pisses me off to see those other people with “invisible” illnesses jumping out of their SUVs and walking quickly, normally, into the store when I limp the entire way.

    I am tired of the “invisible” handicapps. I don’t care if I get a ever get a placard, but would love people to stop abusing them.