Understanding – NOT

Imagine getting sick, pampering yourself so your body can recover, but staying sick despite your best efforts.  Finally you go to the doctor.  Usually the doctor figures out what’s wrong and provides a treatment plan, so you figure that in a few weeks you’ll be back to your old self, healthy again.

Now imagine that you didn’t recover.  Instead of returning to health, you return to your doctor.  Your doctor tells you that you have an incurable disease.  Untreated, your illness can result in kidney damage, heart disease, lung disease, and deformity.  Having this disease means that your life-expectancy is ten years less than it otherwise would have been.  Within five years you’ll probably be unable to walk.

“Fortunately,” your doctor adds, “in the past ten years, some new drugs have been developed.  They will not cure you, but for many people, these medications will postpone the deformity and organ damage.  If you’re one of the lucky ones who are helped by these medications, you might not need a wheelchair for another fifteen or twenty years.”

Unfortunately, you can’t take the new wonder drugs.  They’re extremely expensive, and you have to try the less expensive medications (the ones that result in the aforementioned debilitation) before insurance will pay to try the medications that have been shown to help.

Stunned, you try to deal with this tragic news.

You’d like a listening ear and a shoulder to cry on.  As you come to grips with your new reality, friends call.  They ask if you’re feeling better, or inquire how it went at the doctor’s office.  You’d like some sympathy and understanding.  Instead, people respond with:

  • Just take some ibuprofen; you’ll be fine.
  • You should take glucosamine.
  • Oh, I have that in my neck.  You should see my chiropractor.
  • Oh, I have that in my little finger.  I take tylenol when it hurts too bad.
  • Oh, I have that in my left knee.  I just take motrin.
  • Oh, I have that in my shoulder.  It’s not that bad.

The average person has never heard of autoimmune diseases.  They don’t realize that an immune system gone postal is nothing like the wear-and-tear that some people experience.  Gazing in the mirror, you discover your feelings reflected back:

********

I wrote this post as a participant in IAAM’s 2nd Annual International Autoimmune Arthritis Awareness Scavenger Hunt, currently happening online at the IAAM Facebook page.  Several clues for the Scavenger Hunt will be posted around the web this weekend.  I am posting #5: Misunderstanding Autoimmune Arthritis.

As mentioned in the above post, those dealing with Autoimmune Arthritis often deal with a lack of understanding or sympathy about their disease.  This leads to your task for Scavenger Hunt Awareness Items for #5:  If you have Autoimmune Arthritis, what frustrates you most to hear?  A food or herb to try?  Home remedies? Or maybe it’s that “they have it too, in their knee”. 

To earn 5 Awareness points (that can be exchanged at the end of the online game for free Awareness merchandise), get or create a photo of this misunderstanding, then post it on IAAM’s Facebook page. You can post a picture of probiotics or be more creative and find a picture of someone pointing to their knee. You must post in the next 10 HOURS to earn your points.  Time’s ticking!

*IAAM stands for The International Autoimmune Arthritis Movement, which will soon become the 1st nonprofit in history exclusively benefitting Autoimmune Arthritis.

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One thought on “Understanding – NOT

  1. The really frustrating thing is that up to 80% of the population has OSTEOarthritis at some point in their lives, but only 1% has RHEUMATOID arthritis. Everyone thinks themselves an expert on arthritis, or that they have arthritis, when in fact they have RA’s milder, tamer cousin. It must be very frustrating to have all these armchair-doctors telling you to ‘get over it’, when they CAN take some Tylenol or Ibuprofen for pain relief.

    Well said!

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