Wednesday, May 10, 2017

Just an update!

Good morning everyone,
   I know, it has been a while. The truth is I just haven't had anything pertinent to write about. I can fill a date with words but what good does that really do. If it's not going to help somebody, if it's not cancer related, and if it doesn't give hope to others then writing become self serving.
   Sometimes  it is OK for something to be self-serving. I first began this blog as therapy. Sometimes it is still therapy and sometimes it's just a huge pain in the ass. I love to write. I love giving myself away to others. It puts me in a very vulnerable position to just throw it all out there though. It's worth it. If I can help to inspire hope in just one other person it's definitely worth it.
   So I was thinking recently, Living in a small town, there is not much diversity. There is not a lot of color nor is there a great deal of diversity regarding sexual preference. I don't think I know a single transgender person and in all honesty I only know a couple of gay people. H.I.V. Freaked me out in the 80's back then there wasn't a whole lot that was known about the disease. There was however, enough known about it for ignorant people to make demeaning jokes about human beings that were different than they were and who were facing a terrible disease and horrible death. I myself was guilty of those jokes. 
   Two weeks ago I attended #HealthEvoices17
in the Windy City. Janssen paid for my travel expenses so I could attend. It was my third time attending the conference. I am so glad I was able to attend. What is Healthevoices? 
Healthevoices is a conferences for on-line patient health advocates. Each year, Janssen, together with Tonic, WEGO, and Healthline, invite a hundred or so online health advocates to attend for a weekend of sharing and learning from each other. This year there were representatives from Facebook and YouTube as well as many other great presenters and panelists. It is an amazing weekend.
   In past years I have been the only person representing prostate cancer. This year was no different. There was suppose to be another prostate cancer advocate but his PSA was spiking and he could not make the trip.What was different this year was my interaction with others. This year I really got to know some people and step out of my comfort zone. I must admit, I miss them.
   You may be asking. How does the first part of this blog relate to the last couple of paragraphs? 
   The advocates attending Healthevoices represent a wide range of chronic diseases and conditions. One of the larger advocacy groups in attendance was the H.I.V. group. Also represented was rheumatoid arthritis, psoriasis, I.B.D., Crohns, Breast Cancer, mental illness, and many others.
   One of the break out sessions dealt with combatting stigma. As I listened to the panelist discuss what they had gone through I realize that I had been one of those people holding onto predjudice because of stigma. 
   I have faced my own battles with stigma but they are nothing compared to what others have  gone through. Throughout history there has always been stigma surrounding disease. The stigma surrounding leprosy for instance was so severe that people created a place for the lepers to live away from the general population. It saddens me and frustrates me that in an era of information overload there is still so much misinformation out there regarding chronic disease. 
   Perhaps one day society will overcome Stigma. Perhaps one day we will no longer fear that which we do not understand or feel threatened by people who are different than they are. I know that I came away from the conference a changed person. I wish everybody could experience that. 
   Throughout history there has always been stigma and prejudice. It isn't right but it is a fact of life. My mom used to tell me that I should never judge anyone until I've walked a mile in their shoes. Unfortunately I was a slow learner and had to find out what the karma surrounding prejudice is all about. Often times I found myself walking in the shoes of people I had judged or ridiculed. As it turns out I didn't handle their situation nearly as well as they did. It is my honest wish that no one ever have to experience what it's like to deal with a chronic disease. I know that's not realistic either. Wouldn't it be nice however if  human being struggling with chronic disease could do so without stigma and prejudice. #educate #healthevoices17 #love