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Wednesday, January 15, 2014

One Day

What Would Rheumatoid Arthritis Awareness Mean?  This is the subject I am to write about for Rheumatoid Arthritis Warrior's Blog Carnival on Rheumatoid Awareness.

Did you know that there is an Rheumatoid Awareness Day?  It's February 2, 2014.

I want to start by saying that, in general, when we are standing in a room filled with other's, it is guaranteed that many are battling...something.  And I am sure that many desire to have some light shed on their something.  I can only speak of my something.  And it is Rheumatoid Arthritis.

I would want others to be aware that people with RA/RD are fighting every day to function to the best of their ability,  just like anyone else with better understood/researched/talked about diseases.

Also, sometimes, RA/RD comes seemingly out of nowhere and whips the rug out from under you, your family...your entire life.  And even at it's eventual diagnosis and treatment, things are slow to recover...and never actually recover to the point your life was at when you were standing happily on that rug before (yes, I know this is redundant) IT WAS WHIPPED OUT FROM UNDER YOU! Everything changes.  And rarely for the better.  You suddenly find yourself having to adjust to being dependent on others for the simplest of things.  You find that your home has many obstacles that threaten your independence. For me, I feel like I lost my identity.  I was the do-er.  I worked hard and was able to accomplish many things in a day, and then suddenly, taking a shower became a monumental task.

RA/RD can be all-consuming for the patient and the family dealing with it.  It is an life-changing event.  Period.  Be supportive, not judgemental and never assume that you know everything about the disease or how it or the drugs affects someone.  Because honestly, you have no idea.  RA is different for everyone, affects everyone in a different way and not all patients respond the same to the medications.  Those damn commercials are so misleading.

I think, in the end, what I would like most to come out of Rheumatoid Awareness Day would be for people to recognize the day and if they know someone who is living with RA, that they take a bit of time to learn about what it means to have Rheumatoid Arthritis.  And how to be supportive.  The last thing I ever want is for someone to feel bad for me.  What I really desire is to be understood.  And instead of getting upset with me for doing to much or not enough, realize that I am trying to find a balance, again.  Honestly, it is no longer the disease hurts, it is the people that don't understand it.  There isn't any medication for that.


  1. well said Rachel, especially the sentence "do not get upset with me for doing too much or not enough, realize that I am trying to find a balance, again" this is a daily conversation with my husband daily.

  2. I'll mimic that sentiment....well said. My favorite line you wrote? "Honestly, it is no longer the disease hurts, it is the people that don't understand it. There isn't any medication for that."
    You nailed it, Rachel.
    Thanks for writing, Nancy

  3. Beautifully written. Visiting from RA Warrior. I have RA too and wrote about it too.