Tuesday, October 9, 2012

Why don't people see my invisible illness?

Did you know that according to the 2002 US Census Bureau approximately 96% of people who live with a chronic illness have an illness that is invisible?  These people do not use a cane or any assistive device and may look perfectly healthy.  It is believed that 1 out of every 2 Americans live with a chronic illness and that doesn't include all the people that have chronic pain.  Even though this statistic is outdated and doesn't include everyone, it is a startling statistic.  So why don't we see these people and why don't they see us?

For people that are chronically ill, every day means managing a chronic illness that has had an impact on their quality of life.  These people live all over the world and are all ages, religions, cultures, and nationalities.  As we age the opportunity to develop a chronic illness increases.  Some illnesses are life threatening and others are more of an annoyance.

When I worked at one of the Southern California hospitals I was involved with the Adult Congenital Heart Disease program.  Babies born with a congenital heart defect 40 years ago started to survive due to advances in surgical techniques.  Prior to that those babies didn't survive.  Now we have a whole new adult patient population with congenital heart defects that were corrected as babies and they now need revisions done.  These adults have become the pioneers for adult congenital heart disease surgical and medical management.  They are fearful of dying every day and they are anxious and lonely.  There aren't that many adults with congenital heart disease yet, but their numbers are growing as surgical intervention has continued to be perfected.  No one knows they have congenital heart disease unless they bare their chest.  Otherwise they have an invisible illness.

I want to tell you about two of my friends.  The first one is Sandy.  I have known her for 4 years and I get to see her at least every month.  Sandy has beautiful, long hair and an engaging smile -- she is such a beautiful woman.  She is always in a happy mood and smiling.  Sandy loves life and she has a wonderful husband that is her soul mate.  She enthusiastically tells me about some of the mexican cooking she does and about events going on in her life.  Sandy loves to dress up glitzy and wear lots of bling, and she loves spending time in Las Vegas going to the shows there.  She always compliments me and tells me how much she loves me.  She is like a sister to me and I love her too.

The second friend I want to tell you about works at Z Cafe.  Veronica is happy and bubbly with so much energy and she makes everyone she serves a little happier.  She is a bright star in the night and she always gives me the best hugs.  Veronica also loves life and she loves going out with her younger co-workers.  I always know when Veronica is at Z Cafe, because I can feel her energetic aura clear across the room.  She never quits smiling and she is a beautiful, wonderful woman.  I always look forward to seeing Veronica, because when I do, and she gives me that hug the endorphins are like dynamite!

So, can you tell which one has an invisible illness?  Two beautiful women that both love life and live life to its fullest.  The fact is they both have an invisible illness.  I have known Sandy for 4 years and I just learned several days ago about her chronic illness.  I never suspected, and she never talked about it.  Sandy's illness is rather rare so she doesn't have a good support system from others that share her illness.   . . . I never would have guessed that Veronica has an invisible illness.  I found out about her illness when I asked her about her absence from work.  She is so energetic and happy how would I have known?

The only way we know that someone has an invisible illness is if we look beyond their outer appearance and pay attention to the nuances; that is the only way they can see us too.  When we get to know people better and we are interested in the daily ups and downs of their life we learn things we otherwise never would have guessed.  The majority of the time people are just enjoying interacting with each other and they don't see beyond that.  People are interested in the essence of who we are rather than whether we are ill or not.  People see you and me, and not fibromyalgia.  That's actually comforting to know that people enjoy us despite our illness and we are able to feel a little more "normal".  So, if we look at the statistics we have lots of company out there.  Maybe it's the people without a chonic illness that need some support, because they are a rather small group!  They are the ones in the minority.  Ha!

Slowly but surely people are learning more about fibromyalgia.  More and more people I talk with have a family member with fibromyalgia or know someone with fibromyalgia.  This illness is being diagnosed better and our support system just keeps growing.  We are not alone.  Our illness will always be invisible, but we are not!  Blessings to you, be well and celebrate those moments when you are able to feel a little more "normal"!
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