The Pain Diaries: Advocating An Invisible Disease

I am currently living in a patient advocate dream but it’s still very frightening because I am new at some of the tasks I have been appointed to this year. It’s what I wanted but now the reality of living my dream is in front of me. I fear being a failure, whatever that might be…

This year I am the marketing and recruitment manager for The Arthritis Society Vancouver’s Walk for Arthritis, it was an honor to be asked to participate on the walk committee, even more of an honor when told I get to be this years Walk Ambassador where I will be on Breakfast Television May 28th and to share my story at the 10th anniversary of the only event to raise funds for arthritis across Canada. Because speaking in front of 1000+ people is no big deal. I want to make a difference and do this in memory of my late grandmother and aunt. I want to show my son to be fearless, as well as those living with this disease. I want to show my little heart can do big things.

Scared of hearing no

Scared of being ignored

Scared of not being able to make a difference

It’s an honor to have my story and my vision to create arthritis awareness put together.

I am constantly filled with ideas of how I can create awareness for arthritis. I take my part of being involved in with the walk serious and I want to make an impact. The Arthritis Society isn’t highly funded for marketing on a huge level so I am trying to give my best in recruiting people to join the walk and create awareness about this devastating disease.

I have to really put myself out there. Not easy for a shy girl. Not easy with a disease with so many stigmas behind it. Not easy when pain is something often look away from.

What I am Doing

I’ve sent an invitation to 13 different Vancouver based running clubs to run for those who can’t. I am hoping to hear back and see their support. That’s the scared of being ignored. It’s so easy to feel invisible with an invisible illness.

I am setting up recruitment and awareness tables in large malls. I am getting my friend who has a poster plastering company to plaster the city with walk posters. I am hitting up 4:20 Vancouver to hand out walk flyers because I know a large population of medicinal cannabis users have chronic pain. Thanks to the Arthritis Society for the shirts to help me look legit, too legit to quit. Tuesday I have a friend driving me around the city to hit up businesses to put the walk posters up. I am also designing an arthritis fact sheet so they have more of an insight on this debilitating disease. I’ll be hitting up physiotherapists, naturopaths, chiros, wellness stores, pharmacies, dispensaries, doctor offices, rec centers, anywhere with a bulletin board. I hope people are willing to listen.

I emailed the Vancouver Tattoo Convention to see if they could help me out, after all I have been in Inked Magazine and it seems to be my visual intrigue. Another vulnerable moment being scared of I’ll just get ignored.

I have called passed participants event though I am so not a phone person. I mix up my words the moment someone or even the answering machine answers.

I know I have given it my all and I will continue to give it my all. My recent experience at HealtheVoices in Dallas Texas has given me great inspiration to keep moving forward with my dream and my mission.

My Dream

My dream is to make a difference, as significant or as little as I can achieve.

Published by Chronic Eileen

Rheumatoid arthritis advocate, writer and speaker.