Invisible Illness - what you don't hear

Seven years ago I was diagnosed with an autoimmune illness called Ulcerative Colitis.  While I was relieved that the doctors were able to give a name to what was going on with my body, no doctor prepared me for what I would endure from the age 16.  No doctor told me what it would be like, mentally, physically, or emotionally to have to live with a physical illness for the rest of my life.  No doctor told me that I would have to learn on my own how to advocate to the world.  That it would be my responsibility to convince everybody I came in contact with that even though I did not look sick on the outside, I was very sick on the inside.  No doctor prepared me for the many walks of shame; the time I was walking alone on my college campus and passed out with no one I knew around me.  No doctor prepared me for all the things you “don’t hear about” after hearing the diagnosis.

Since being diagnosed I became an expert on all things chronic illness.  I want to make it my responsibility to make it easier for anybody I can. The purpose of this blog will be to provide all of those struggling with a chronic illness a way to hear (read) about what no doctor can prepare you for when you get the "official" diagnosis.   What does it really mean to live with the illness and the diagnosis?  This blog will not only be about sharing my story, but also, the story of others who too live with chronic illness.  By including stories from other chronic illness worries, my goal is to make sure no one feels alone in what they will endure from the time of their diagnosis, to the day that they leave this earth.   

I want to make it known that for those suffering from chronic illness(es) the many horrific disease treatments, with horrible side effects, NEVER end.  Treatment and its side effects go on, forever, with no promise of ever becoming “better.”  It’s a progressive state of worse.  Nearly 117 million Americans suffer from at least one form of a chronic illness, and the illness ulcerative colitis makes up about 900,000 of those people.  To me, that is not only 900,000 people I could directly help, but also, nearly117 million people I can relate too in one form or another.

My disease eventually became so severe that I had to have my entire colon removed at 20 years old, and live with an external ileostomy.  This is rare, and only happens to about 2% of those living with Ulcerative Colitis in the United States.  I will not stop advocating for those with chronic illness until this specific 2% on people feel informed, comfortable and confident in what is going on with their body.  Knowledge is power. I want to show those who find themselves in similar situations that there is hope.  There is a way to turn this huge negative aspect of their life into a GIANT positive.  

I will make it my life responsibility to not only keep this blog going, but to also speak out physically in person.  I want to do this at various schools, to their chronic illness clubs, and share with them my story so they can see how I have overcome the horror of this illness(es).  I will continue to try to jump-start a chronic illness mentoring system at Boston College as I return there (hopefully) in the fall.  On the most basic level, I will raise money for finding a cure, by getting involved in my community and participate in walks relating to various forms of chronic illness; and especially walks that pertain directly to Ulcerative Colitis.  

I want to inspire others.  I want them to know that they are not alone. I want to give them strength in their fight.  Writing this blog will allow me to show everyone struggling with a chronic illness that it does not define them.  What does define them, however, is the attitude they have, and how they use their chronic illness as a strength in their life versus a weakness.  If I can just reach at least one person through this blog, then I know I am answering my call; allowing people to live the happiest, and best life, they can while struggling with a chronic, lifetime, illness.