Advocate or Ignorant?

I always think of the things that people say to me out of ignorance of my disease and I really can't blame them.  I too, was ignorant until this disease took over my body, but I've decided to become an advocate for myself and others that are suffering. 

-50 MILLION AMERICANS suffer from autoimmune diseases
-Can you name an autoimmune disease?  Only 17% of folks can.
-Did you know that Type 1 diabetes is an autoimmune disease?  I would say you know about diabetes but didn't know it was an autoimmune.
-autoimmune diseases are conditions in which the body's own immune system can (among other things) cause damage to the skin, joints, and internal organs.  The body actually attacks it's own cells.  In other words the body kills itself from the inside.
-they run in families/are hereditary
-over 75% of those affected are WOMEN
-it is possible to have more than 1 autoimmune disease at the same time and the symptoms are often similar which makes it difficult to diagnose
-autoimmune diseases are a leading cause of disability and death
-THERE IS NO CURE!

I have ankylosing spondylitis one of the over 80 types of auto-immune diseases.  There are more people with spondylitis than Lou Gehrigs disease, cystic fibrosis and multiple sclerosis COMBINED!  I bet you've heard of those, but not spondylitis.  Why?  I was one so I don't know why.  I just know it's what I have--I know that every single day...EVERY SINGLE DAY...I'm dealing with-pain, fatigue, medications that are HORRIBLE.  My next two months will be full of all of that plus epidural spinal injections and shoulder surgery to remove about an inch of bone so that, hopefully, we can spare my rotator cuff.  I know that my doctor told me, we'll do what we can, but I can't make you pain free--this is life for me.  He can't stop the disease, but he can make it where I can get a glass out of the cabinet.  Yea, a glass.

I wonder why there isn't knowledge of ankylosing spondylitis.  It's an autoimmune arthritis.  So when we get lumped into the "arthritis" family I think that's when ignorance comes in to play.  Autoimmune arthritis is NOT the same as "arthritis".  Osteoarthritis is probably what everyone understands--it's degeneration of the joints and does not have additional symptoms.  When I say, I have narrowing of the spine--and folks reply, oh yea, I have that too--umm no you don't, is what my mind says.  My spine is slowly fusing together because of a the disease.  For those of us with ankylosing spondylitis, I think it's important to say autoimmune disease and just not even associate it with arthritis.  I don't understand why the arthritis association doesn't focus on separating the difference.  Maybe this would help clarify the confusion.  Maybe this would help advocate and do away with some of the ignorance. 

I also wonder do the associations like the arthritis foundation actually know the difference themselves.  Do the employees at these type places know the disease--sometimes I wonder are they all healthy, they must be!  Because one of the first things they say to folks with arthritis is exercise will help.  Well, that's not what you say to someone with an autoimmune arthritis.  That's not what you say to me!  That's ignorance.  Exercise?? Really?? Do you know what ankylosing spondylitis feels like?  Do you know it's hard for me to walk sometimes? Do you know that I can't "exercise"? Do you care to educate yourself....

I've heard ignorant comments even from doctors--I just want to say really???  Actually, I may have-ha and I know for a fact that I've had to correct them and educate them myself!

I don't understand why we don't talk about autoimmune diseases.  We talk about cancer.  A thought just occurred--I wonder how many folks with cancer have a link with an autoimmune disease--now, that would be a great study!  I know the medications I'm on can cause cancer and one medication I'm on is a cancer treatment.  Is there a link??

So, my question is-are you an advocate or are you ignorant?  Harsh?  I don't really think so.  I'm not saying you have to go out there raise money, blog or talk to others about a certain disease.  I think that being an advocate is also knowing, educating yourself, even trying to just understand.

For me; Life isn't about waiting for the storm to pass...it's about learning to dance in the rain".

I have AS, but it will NOT have me.

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