You have to take the good with the bad. I subscribe to this philosophy not just when it comes to my life but also when it comes to my favorite hobby – scrapbooking.

I started scrapbooking almost two years ago now. My mom had made me a beautiful scrapbook for my Bat Mitzvah when I was 13. She promised my younger sister Danielle the same thing. But life got in the way and my sister’s Bat Mitzvah scrapbook turned into a middle school graduation scrapbook then a high school graduation scrapbook and finally a college graduation scrapbook.

As Danielle’s college graduation approached my mom still hadn’t started the scrapbook. But I figured maybe I could help. After all, I was home all day with nothing to do. It might even be fun, I figured. I had no idea I would end up loving it so much, that I would find a hidden talent, and a passion… well more like an obsession.

When all was said and done, my sister’s college graduation scrapbook became a three volume set encompassing her entire life up until that point. It was time to move on to other things, so I started in on my own life.

While going through my own pictures from the last several years, there were many pertaining to my illness. Hospital stays, doctors appointments, and so on. There was even a birthday I spent in the hospital.

At first I was hesitant to include these not so happy memories in my scrapbook. But I realized that these were experiences that I also wanted to remember. These bad times in my life are part of what makes me who I am. So I put them in.

The actual time I spend scrapbooking is therapeutic. It exercises my creative muscles and helps me relax for a few hours while I design and arrange, cut and glue, label and decorate.

It’s actually rather therapeutic to scrapbook memories of my illness. Once it is scrapbooked, it feel more concretely in the past. And it can help me look to the future. For instance, I did a page of my me taking my first few steps when I first started walking again. Now I am able to walk around a store! I can look back and remember it and see how far I’ve come!

Before the wheelchair and the Prednisone, I could hide my illness in plain sight.  This is me right after a hospitalization.

Before I was in a wheelchair and now a walker, my illness was pretty invisible.  Though there are many downsides to invisible illness, one thing I did appreciate was that it gave me a choice of how much I wanted to share if anything about my illness.  If I wanted, I could mostly hide my symptoms, and no one had to know.  But my wheelchair became a physical sign of my illness and suddenly everyone, everywhere I went, instantly knew something was wrong.  And the big question that lingered in the air was “WHAT?”

I have always been a very open person.  Though like everyone I want to be accepted, I really don’t fear rejection.  Or at least I’d rather be rejected up front by someone I just met than a close friend far down the line.  So my policy about my illness has always been to share as much as the person I’m talking to in curious to know.  And the interesting thing has been that this has brought many blessings in itself.  When I share about my illness honestly and openly, I generally find that people respond with genuine empathy.

Sharing so openly has also given me the opportunity to help many people.  There are so many people out there going through similar experiences to me themselves or have a loved one or friend who is going through something similar.  I find that when I follow my intuition and share I find I’m speaking to someone who can benefit from what I have to say.

People are usually dying to ask me why I’m in a wheelchair or using a walker, but are afraid of being rude.  So I’ll steer the conversation that direction and put them out of their misery.  In this fashion, I often find myself sharing about my various illnesses with people I just met.  Sometimes I share the story of my physical illness and sometimes I share my struggle with mental illness.

Sometimes sharing doesn’t go very well.  Though most people are supportive and understanding, there will always be the ones who are judgmental or want to tell me what to do.  Either way I never regret sharing about my illnesses.

I find it’s important though that when I talk about myself, my illnesses aren’t the only thing I share about.  I am not my illness, and if I can communicate one thing that sticks with the person I am talking to I hope it is that people like me with chronic illness are so much more than the sum of their diagnoses.  I am also a women with hopes and dreams, talents and aspirations, fears and weaknesses.  I am human just like everyone else.  I am a graphic designer and a game designer and a novelist and a blogger and a scrapbooker.

I hope I never lose my desire to share fully and genuinely, and that I never forget to share the most important thing of all – what makes me who I am.

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!