It’s National Invisible Illness Awareness Week, September 14th to 20th!

I’m a 33 year old mom of two busy, young teens.  I have soft pale skin, barely a wrinkle has begun around my eyes or on my forehead.  I have gentle curves, blue-green eyes, curly, long brown hair, and long legs.  I’m often told that I look much younger than I truly am.  I look healthy, so why am I wanting to talk about National Invisible Illness Week?

All of my life, I’ve looked healthy.  On the outside, I am the picture of health!  Inside though is another story.  From birth I have lived with invisible disorders.  Everything from internal birth defects to chronic disorders.  I learned at a very young age that I was a little different.  As I’ve grown older, my list of medical snafus has grown; all are chronic, most will worsten as time goes on.

I first stumbled upon NORD (National Organization for Rare Disorders) when I was in my late 20’s.  A friend of mine, whom is also a doctor, suggested that I check into it.  At 27, I had already been diagnosed with two rare disorders, by 33 I now live with four.  Nord is an EXCELLENT information resource for anyone that lives with a rare disorder or loves someone who does.  They offer a wealth of information, seminars, current medically related politics, message boards, and more.

Two other priceless resources are But You Don’t Look Sick and Invisible Illness.  Both were started by people who live with chronic invisible illnesses and grew into amazing support networks with message boards, blogs, research information, and more.  I have been a member at BYLDS for three years now.  It has been an amazing avenue of support and information.  Like anyone living with illness, the support of others, knowing that you’re not alone, is one of the most important parts of ongoing treatment.

As you may or may not have noticed, I keep saying  living with instead of  dealing with,  suffering from , etc.  I do this very purposefully.  In my short 33 years I have lived with epilepsy (age 7 through 17), cancer (at age 24), ongoing heart disease, syncope, renal disorders (coupled with renal deformities), degenerative spinal disorders (coupled with spinal deformities), arthritus, a mass on my brain, and more.  There was a time in my life, many years ago, as a teen struggling with self-identity, when I looked at my medical complications as burdens.  I frequently sat crying WHY ME? After some time I realized that my medical complexities are part of who I am.  I have a choice:  I can allow them to drain me and guide every aspect of my life or I can see them as part of who I am, a stepping stone of strength, understanding, and uniqueness. I can live with them instead of in spite of them.  Some days are harder than others.  There are days when it takes all I can muster to simply get out of bed, walk about, take care of my household and enjoy activities with my children, but I do it.  Every day I count my spoons and I move forward.  I appreciate the lessons I have learned due to my health and embrace every moment, big and small.

So, as with books, don’t judge a person by their cover! All of our stories have complexities, mine happens to have a lot of medical twists and turns, but its a good story none the less.   My story may be longer or shorter than some, but it’s just right for me.  All I ask is that people don’t judge me, or anyone else, by individual chapters, but instead take in the whole story.