When you are sick all the time you often have to (sometimes unwilling) rely on the help and support of other people.  And that is something that should not be taken for granted.  So today, on the one year anniversary of this blog, I feel like I really have to thank all of you who have joined me in my journey as a novel patient.  During the ups and downs of this last year, your comments and support have been such a source of strength for me to draw upon.  And this blog has come a long long way since my first post.  Not only has its readership grown, but its pushed me to improve as a writer.  It’s even spawned the Novel Patient Community where every novel patient can have their own blog.

Though it has been a rough year in many ways, I am thankful for so many things.  I am thankful for a mom who not only lets me, her 26 year old daughter, live with her, but helps take care of me.  I am thankful for a dad who cares so much for me that he will always try and do what he thinks is best for me.  I am grateful for a caregiver who I also consider a close friend and a also for a best friend who I know will always be there for me when I need her.  I am thankful for a wonderfully supportive sister.  I am thankful for a cuddly dog that adores me.

I am also thankful for my doctors who have often gone out of their way to make sure I get the care I need.  I know I am a very complicated case to have to deal with.  This year I decided to make the five of my doctor’s I see the most handmade holiday cards to let them know how much I appreciate what they do for me.

Today is the first day of National Invisible Chronic Illness Awareness Week, and it has me thinking about thinking about both the visible and invisible aspects of my illnesses.   Nearly a year ago now my invisible illnesses became a lot more visible.  The pain from my arthritis became so severe I could no longer walk or even stand.  I was forced to use a wheelchair for my mobility.

Before the wheelchair (and the walker that came before it), my illness was completely invisible.  At the time I found it completely frustrating that no one could see that I was sick.  People assumed that what they couldn’t see couldn’t possibly be serious.  Sometimes people assumed that what they couldn’t see wasn’t even real.  Now I wish I could ditch the wheelchair and still pass myself off as “normal” when I wanted to.  I feel like now my first impression always inevitably includes my wheelchair.

But despite this very visible symbol of my illnesses, I feel more invisible than ever.  It is very hard to go out in a wheelchair, and I am usually too tired and in too much pain to do so.  As a result, I am mostly home-bound.  I am literally invisible to the people in my life I used to see in person.  Out of sight.  Out of mind.

But though I am invisible to most people in the physical world, I am very visible in the virtual world.  Through this blog my illness is not invisible at all.  It is there for people to see plain as day.  Through this blog the invisible becomes visible.  Here I can let you see the things that most people can’t.

Here the joint pain, the numbness in my left side of my body, the severe dryness, the low grade fevers, the debilitating fatigue, the pain when I swallow, the nausea, the stomach pain, the rib pain, the muscle weakness, the tremors, the migraines, the involuntary muscle moments, the memory and concentration problems, the seizures, the sleep apnea, and the obsessive compulsive disorder all become visible.

Here too, the emotional toll is no longer invisible.  The worry, the loneliness, the anxiety for my future, the grief for how things once were, and the sadness for the friends I’ve lost along the way all become visible.

And I especially hope that lessons I’ve learned, the inner strength I’ve found, the faith in myself, and hope for the future are not invisible here either.

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

A virtual conference in held at www.invisibleillnessweek.com and the blog is updated a few times a day during August and September.

Bloggers are welcome to participate anytime, but are encouraged to unite efforts during August and September to increase awareness online and share their experiences as well as encouragement. A badge is available that says you are blogging during the actual awareness week.

Start a blog on Novel Patient Community today and blog about your chronic illness in support of the awareness week!

I am pleased to announce the opening of the Novel Patient Community beta!  Featuring member profiles, friends, blogs, groups, forums, and more, the Novel Patient Community is a place where patients with chronic illnesses can come together to find friendship, inspiration, and hope!

As a Novel Patient living with multiple chronic illnesses, I’ve found it hard to find people in the real world who can identify with and relate to my experiences, but I realized that through the power of the internet I could create a virtual space where other Novel Patients could gather to share and support each other through our unique journeys.  And so several months ago the concept of the Novel Patient Community was born!

But it wasn’t until this long weekend that I got to work.  Over the last three days I’ve been working tirelessly to build and design the Novel Patient Community from the ground up! (I’d like to thank David Flor, RungeKutta, and RedCT for their assistance when I got stuck!)

Now that my dream has become a reality, I hope you’ll join the Novel Patient Community as we celebrate what makes us all Novel Patients!