Wednesday, September 7, 2011

Got My First Shout Out!

A fellow blogger, Rheumatoid Arthritis Guy, posted my blog address on his home page!  Thank you RA Guy! This is exciting!  For a while now I have been thinking I am writing this blog and only my friends and family are reading it.  I mean, it is great that anyone is reading it, but it would be nice if someone with RA would also read it. You know, someone who didn't love me already!

Not that I am a person who is a people pleaser because if you knew me, you would know that is not true.  As my family can attest.  But if you knew me you would also know that writing a blog is way out of my comfort zone.  I had RA for many years before I told anyone outside of my immediate family.  I would hide my pills and Medic Alert necklace.  At work I only told the President of the organization after swearing her to secrecy.  I didn't want anyone to know.  I didn't want anyone to treat me differently.  I wonder how many opportunities I missed to educate people by keeping my mouth shut. 

The absolute funniest part is the President I worked for was the first person who ever said to me "you don't look sick" one day when she was asking me how I was feeling with my RA.  And she was a nurse prior to being the organization's President.  I just goes to show you that even people educated in the medical field do not always understand RA. 

So what made me not want to tell people?  I guess was afraid of being treated like I was sick but as you can see from the President's reaction, I probably didn't have to worry about that!  I thought  I would miss opportunities because people would see me as "disabled" or "not as abled".  You know "don't give more work to Adrienne, she doesn't need more stress."  I didn't want to hear that.  I wanted to hear that I was being treated like everyone else.

The other reason I didn't always tell people is the reason people with other diseases don't tell people: they don't want to become the disease.  I didn't want to become "the girl with RA".  I didn't want all my conversations to be about RA.  I didn't want everyone to always ask, with that tone in their voice, "how are you?".  I know they mean well but RA is a long haul and I didn't want to always be reminded that I am ill.  For a while last year, I was going through a bad spell where the doctor's could not figure out what was wrong with me (turns out it was Crohn's) but for months I was quite ill.  I finally asked my family (I have a large family) to stop asking me how I feel or about being sick.  I could not hear any more about it.  All the phone calls asking me how I was feeling just kept reminding me that I was ill.  I also have the well meaning folks that try to diagnose my illnesses.  "My friend had XYZ so maybe you have that."  XYZ is never a hang nail or split ends!  It is always some horrible disease that I didn't want to think about.

With this blog, I have come out of the closet, so to speak.  I am laying it all out on the table.  I have RA (and all the other lovely autoimmune diseases) and I am no longer keeping my mouth shut.  I am here to educate and advocate.

2 comments:

  1. This post really captures the frustration so many of us feel at work I think. You don't want to be "that poor person with RA", or receiving the most ridiculous advice ever, but equally you need people to understand why you might not be able to do certain things.

    Thanks for posting, the more that know and understand about this condition the easier it will be for us all.

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  2. I appreciate the motivating words, Halo_Jones! Thanks!

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