I just came back from Chicago where I was privileged to participate in a conference of other patient advocates for all sorts of chronic illnesses. It was inspirational and helped me recharge my batteries. There were patient advocates representatives from many different diseases like brain illnesses (schizophrenia, bipolar disease, and depression) cancers (testicular, breast, colon) Inflammatory Bowel Disease, blood disorders, autoimmune diseases (Crohn's, RA, Ankylosing Spondylitis) to name just a few.
These advocates shared their stories, their experiences and their advocacy ideas. It was really inspiring.
We can all thrive with chronic illnesses if we want. We need to make the decision to thrive, not just survive.
Joel
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JoelT
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I really like the “ we need to make a decision to thrive, not just survive”. During my journey I have often said “I choose to be optimistic”. And that is a choice not doubt about it. I still have those feelings of anxiety and fear but can acknowledge them and let them move into the background so I can go about my business of being happy—thriving. This thriving part of the journey is the most challenging part for me. But it’s perhaps the most rewarding—I am alive and am learning. Best to everyone.
You are so right. We need to find ways to stay positive and recharge our batteries. I do believe that part of the process includes still allowing ourselves some moments of having a pity party. However, we need to control and limit them. For me part of being positive is acknowledging who we are and what effects us. The trick is always not allowing what effects us to control us. We need to stay the masters of out fates.
Hi Joel, that's awesome! Can you share with us how you found out about the conference? Were you able to get travel grants or did you have to foot the bills to attend? I love to attend events like that but my budget says I must have assistance with travel and hotel costs.
Yes. I would be happy to share the information. The conference was sponsored by Jansen (Johnson & Johnson). The program webpage is jnj.com/leadership/healthev....
They cover all expenses, travel, hotel and food. This was their 4th year providing the program.
They said that there were 120 of us in attendance and that they received 400 applications. They accept only patients with chronic illness who are active advocates and who have an online presence. They do not limit the participants to illness that they have drugs to treat, so anyone can and should apply.
I do not have the next dates for the application period, but I have been told that as a past participant I will be informed about the next application period. I will share that information when I learn about it.
It was an amazing conference, not like any other that I have attended.
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