FM/CFS/ME RESOURCES - Making the Invisible...Visable


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Making the Invisible...Visable

Living with an invisible illness, or living with several of them, can be challenge. Sometimes, I think the greatest challenge is getting family, friends, and doctors to take invisible illnesses seriously. Over the last two decades I have heard it all.

"But you don't look sick", "you're too young to be this sick", and at one point... "you're to pretty to be this sick."

Really, would those same people make those comments to a cancer patient? Then there are the other comments.

"You're just depressed", "you just need to exercise", "you just need to get out more."

I've had people approach me about parking in a handicap spot, with my placquard in plain view. I had one elderly woman stop my wheelchair/cart while I was going down an isle, and pronounce to me that, I didn't look sick and she wanted my cart.

I have had my funny and laugh out loud moments as well. In downtown Portland, my daughter Heather, her best friend Catie, and I were off on an adventure. This was a rare treat for me. Two guys stopped and asked my daughter if she was disabled. She boldly yelled, "NO, but my momma is broken!" I still crack up over that one.

I've also heard things like,

  • you need to put a banana peel on your forehead to cure your migraines
  • you need this magnetic necklace and you'll feel better
  • you need this copper bracelet and you'll feel better
  • you need this cough medicine and you'll feel better
  • you need this gogi berry juice and you'll feel better

I've had doctors and nurses pronounce there is no such thing as Fibromyalga and Chronic Fatigue, i'ts just a made up term, you don't have a real disease. Other comments from doctors; "it's all in your head", "nobody gets migraines for three days in a row or migraines three times a week."

I'm lucky I still have a clear mind and hair left at this point, lol. I decided pulling my own hair out of frustration and feeling like I was banging my head against a brick wall (or someone elses head) was not going to help. Awareness, education, and research are key, unfortunately, there was not a lot information available in the early 90's. Thus, my quest for awareness and information began.

May 12th was designated as Invisible Illness Awareness Day, in honor of the famous nurse, Florence Nightingale, a most appropriate choice. She was born May 12th, 1820. What is not often known, is that Ms Nightengale had a long term, debilitating illness, Brucellosis aka Crimean fever, brought on from contaminated milk or meat, and causing chronic muscle pain. Florence lived to be 90 years old, and she knew intimately, what living with chronic pain was like.

In a writing workshop, I was given a prompt; what could you NOT see, by just looking at me:

  • You can't see that it is taking every ounce of physical and mental energy to keep it together, because my physical pain is so overwhelming. You WILL see me start to shake, or sweat, and look like I am about to pass out.

  • You can't see that the pain in my neck has turned into a migraine. But, within a few minutes, you WILL see my eyelids begin to swell, to protect my eyes from the light. My fair skin will change color and resemble that of a corpse.

  • You can't see that I get lightheaded from standing up. But you MAY see me hit the floor, because my blood pressure is too low.

  • You can't see that my colon/gut, or uterus (when I still had one) feels like razor blades are whirling about. But you WILL the see all color drain from my face.

  • You can't see that my entire spine is in spasms, from my neck to my tailbone. But you WILL see me doubled over in pain.

  • You can't see the pain in my hips and shoulders. But you WILL see me having trouble walking and rubbing my shoulders.

  • You can't see nausea, or that my stomach is churning, and I am trying so hard, to not throw up. But you WILL see my lips turn white.

  • You can't see my vertigo. But you WILL see me grasp the wall or use a cane to walk.

  • You can't see my migraine. But you WILL see me wearing sunglasses indoors and out.

  • You can't see my arthritis. But you WILL see that I can't turn my neck with ease.

  • You can't see that I woke up exhausted, or that I had less than 2 consecutive hours of sleep, that the life force has been sucked out me. But you WILL see me yawn and become tired after 2 hours at any task.

  • You can't see that I am panicking, anxious, that the bright lights, the sounds, the smells of a public place are getting to me. But you WILL see me avoid places, or events, that can bring on sensory overload. You might even hear me doing a grounding exercise, just to calm my own nerves.

We have been considered invisible, because doctors, friends, and family could not see our pain. Our conditions were ignored or research was put off for decades. Now, thanks to advances in medical technology and research, Fibromyalgia can be seen on brain scans. Fibromyalgia has been shown in studies to be genetic and hereditary, and they have identified genetic markers. Dr. Oz even called Fibro a disease, that is progress. Medical diagnosis criteria has changed in recent years to easier diagnose Fibro and CFS/ME; even the CDC now recognizes CFS/ME as a real and legitimate diagnosis.

One thing I realized about that earlier list, my conditions are not really that invisible. I am not invisible. WE are not invisible! We are not just numbers, we are a percentage of the population in every nation in the world, in the millions.

For the past few decades, we have tried to prove that our symptoms are legitimate, well, mission nearly accomplished. Educating others, spreading the word on awareness is important, even urgent, because we want understanding, and one day, we want a cure.

Consider May 12th a celebration, honoring Florence Nightengale, but more importantly, honoring and even celebrating everything you have survived to date. I'll be wearing my purple and blue silk bracelet. I will remember those who lost the good fight. I will... we will...continue to support our online friends, provide informaiton, share new research, and promote awareness.

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