National Invisible Illness Week: September 9 – 15th

Fibromyalgia Eye

Fibromyalgia Eye (Photo credit: Vinally2010)

Who am I?  Can you see me ? Over here. The woman with the curly brown hair, green eyes, the one sitting down on the bench inside Target or the supermarket. No, I’m not lazy, I’m tired. Did I sleep well? No, but I don’t usually sleep well even though I have medication for that. Do I feel rested when I wake up, eager to take on the world. Well, no but I am older. How old? I’ll be 57 in two weeks. Well, it might not sound old to you, to me it’s ancient.

I have a childhood friend who claims she has Fibromyalglia  but refuses to see a rheumatologist. What? Yes, she sees a general doctor, one who knows about endocrinology for her thyroid.Do YOU see the point? Right, me either.  I have tried so hard to help her feel better but I’ve stopped, she obviously doesn’t want to feel better, she wants to complain.I grew up with her, no other bond, my mother remembers she’s been complaining since she was five, I remember it too.

I had to go to neurologist after I suddenly fell, on my back and test after test came out perfectly normal except for one: I had no balance. He had me walk a straight line in his office as if he was a police officer and I was a drunken driver. I zig -zagged on that line as if I had an overdose of margaritas and tequila sunrises and amaretto sours, mixed together in a huge bathtub big enough to fill a college party.

“Hmm” he said, “you have no balance” I nodded my head, up and down, ‘yes, I said, I know’ but he shrugged his shoulders and sent me away and said “I was fine.” If I was fine, why didn’t I have any balance? “Oh, it’s probably your Fibromyalgia…”he said. I’ve found now that when doctors don’t know what you have and they know you have Fibromyalgia that’s the answer they give. Nobody wants to take the time to figure it out, they don’t care, half of them don’t believe in the diagnosis anyway; since we don’t have many answers let’s all lump the various symptoms together toss them into a bag and label them Fibromyalgia. That’s easy.

What’s not easy is not having a cure and there really no potential in site. I happen to have a wonderful rheumatologist in the city and he is not only incredibly knowledgeable, he also really cares and that is an amazing combination and very hard to find. I don’t have as much pain as others but I have no energy. I can do one or two errands depending on the day and I never know in advance. It’s hard to make plans. Close friends understand, others don’t, want to know who your true friends are? Oh, it’s not hard at all.

I have a handicapped parking sticker for my county, you should see the dirty looks I get sometimes when I try to get out of the car. People judge on no information, they don’t ask, they immediately judge. They don’t notice the pain in my eyes from sitting in my car trying to stand up? No. So they notice the pain in the back of my eyes so I don’t cry out?  I don’t look “sick” is that it? That’s what I thought.Do not judge me or my handicapped sticker, I don’t judge you.

There it is, I don’t look sick therefore I must not be sick? Wrong. If my legs were in casts or my arms and shoulders too perhaps you would understand, but just because my pain is in the inside doesn’t mean I’m not sick. Sometimes, I wish I could show you my pain, physically. because emotionally, you’ve already done your very best to make me feel like worse than I already do. Maybe you could stick my whole body in plaster, maybe then you would understand.

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2 thoughts on “National Invisible Illness Week: September 9 – 15th

  1. I love this post too, it’s not a list of complaints, but just a matter of fact description of what people with Fibromyalgia experience every day and how different our lives are than people without it. Thanks for this post, especially on this week of awareness.

    Like

  2. Dearest Laurie, I love this post.

    Your words touch on so much of my personal experience and I’m betting, many of our invisible pain sisters and brothers as well.

    Thank you for writing and sharing this week.

    Hugs, Wishes of Peace, and Love,
    your sister,
    Michelle.

    Like

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