Tuesday, September 8, 2009

National Invisible Chronic Illness Awareness Week: My thoughts, My Life

National Invisible Chronic Illness Awareness Week is fast approaching.  The kickoff is on Monday, September 14,  2009.  Many of your favorite health bloggers will be discussing various chronic illnesses at this time because nearly 1 in 2 people in the US have a chronic illness.  From that statistic, about 96% of  illnesses are invisible.  These may be shocking numbers to some, but when you think about it, how many people with Cancer look sick?  They may loose their hair from Chemo, but aside from that, most of the time these people look healthy.  People with Fibromyalgia, heart conditions, Diabetes, ADD, ADHD, arthritis, Lupus, and Lyme Disease all look healthy too.

It is unfortunate at times that any of us with a chronic condition appear fine, because there are some people who don't understand how we could be feeling okay one day, and reeling in pain the very next.  Some of us with a chronic condition wish we could have some type of visibility to our illness, but I'm not one of them.  I know I may not be understood by some people and that's okay with me.

Why is it okay?  Because if that individual can't be bothered to take the time to get to know me, well they might not be the type of person I want to be around.  People who do know me can say that I'm a very open and honest person.  You don't have to guess at how I feel because I let you know.  I'm also very giving and appreciative.  If you take the time to help me, I will appreciate you back.  I feel these are good qualities to have. 

But there's one thing that I used to do before my diagnoses that I don't do anymore.  I don't apologize for being me.  Some of you may wonder what I mean, so let me explain.  You see, I used to have a lot of people in my life that wanted me to agree with everything they said and do everything that they wanted to do.  I'd help them clean their house, watch their kids, offer my shoulder for crying fests, and the list goes on.  In return, they'd be my friend by coming over for coffee or showing up for one of my holiday shindigs.  And that was great at the time.

Once I got diagnosed, my schedule started to change a bit.  I was throwing less parties and I couldn't watch other people's kids or have all-night shoulder crying phone fests either.  I was tired from my own immediate life.  I tried to be as nice and as accommodating as possible to these friends at first.  I'd apologize for being scatter brained instead of trying to explain fibro fog for the thousandth time.  I would blame my being tired on 12 hour shifts at work or being up with the baby, instead of my chronic fatigue because I didn't want to hear how tired they were from an 8 hour shift at work.  I even apologized for being cranky with them

A lot of us do this on a day to day basis because we don't want sympathy and we don't want people feeling sorry for us.  But why should we feel sorry for being sick?  This is the realization I came too when I had asked an old friend to help me.  It was very rare that I asked her for help and when I did, she almost always said no but this time was different.  She had said she would be able to help, but blew me off at the last minute with an I just can't because I'm too tired from work excuse.  I probably would have let it go, but when I heard the statement You have to understand how hard my life is, I lost it and started yelling into the phone.

I did this because I did understand her life.  She had struggles like we all do when we are first starting out with a husband and a child.  I had (and still have) the same struggles.  I worked a full time job and then came home and cooked dinner and I'd spend my one day off a week cleaning the house.  I know and understand what that's like and I can sympathize more than most because I did (and do) all of these things with a disability to boot. 

I yelled because I was upset for being mistreated.  I yelled because I was mad at the fact she was blowing me off.  I yelled because I was irritated by her lack of understanding my needs.  I yelled out of frustration because it was apparent that I had to take on the brunt of responsibility in her absence.  She knew this, I'm sure, but she still expected an apology for my behavior. 

It was at that moment that I had an epiphany.  I decided not to apologize for yelling at her and decide to agree that we would disagree with the situation.  I did this because I knew she would never truly understand what it's like to have Fibromyalgia.  She couldn't because she can only see a regular life staring back at her.  And that's okay.  But just because she view things differently, does not give her the right to mistreat me due to my Fibromyalgia. 

My friend and I don't talk anymore.  Perhaps her life is busy, perhaps she still feels the sting of that uncomfortable day.  That's okay too, because she taught me a very valuable lesson.  The lesson?  Never take yourself for granted because others can and will.  Don't ever apologize for being sick.  You can't help it, but they can help you by being supportive.

Stay fabulous!
Love and friendship,

Kimberley
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