This is the final post to recreate my keynote speech delivered at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle.
One of the most difficult challenges to face when living with an autoimmune disease is knowing that you can’t necessarily perform at the peak of your potential. This thought is not only a major blow just after diagnosis (and part of the initial grieving process), but continues to rear it’s head as your disease level changes over time .
This was the key challenge that inspired me to create the Autoimmune Grief and Life Stages and design a program to help me adjust in a healthy manner. I knew that if I wanted to work (and live) at the highest level of my capabilities, I needed to know the parameters of my capabilities. These parameters can change without much notice (depending on my disease level, emotional stage, or the required commitment level of the opportunity) and paying attention to my Sjogrens history helps me know how to create my future.
As I’ve stated in earlier posts, I try to be very mindful about the emotional and physical stage I’m in, and then utilize tools to help me get to a better stage. I call this being on the Road to Reinvention, and I’m getting pretty good at it!
Continue reading “Tips to Move Through Autoimmune Stages”
This is the third blog post to recreate my keynote speech given at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle. You may want to read previous posts about the speech: Relapse to Reinvention and 10 Stages of Autoimmune Grief and Life. This post is intended to help you Define Your Autoimmune Stage Clearly.
If you are reading this article, you are probably living with an autoimmune disease or you love someone who does. One of the most important aspects of living well (or as well as you possibly can) when you have a chronic illness is to be very honest and very mindful with yourself. It’s the only way that I’ve found to be effective at managing the disease, avoiding as many relapses as possible, and living a fulfilling life.
I love the word “mindfulness”. In general, it means the honest recognition and acceptance of current thoughts and feelings with the goal of reaching a place of greater good. For autoimmune people, we also need to add being mindful about the past: what causes relapses, what helps us feel better, where do we get stuck, etc. There is much research on mindfulness and how to apply it as a meditative, psychological, or (even) business practice, but I am using the term more generally. I try and practice mindfulness so I can accurately recognize my autoimmune stage and either grow to a better state or maintain the great state I’m currently experiencing. Mindfulness may be the best tool to help define your autoimmune stage accurately.
As a person living with Sjögrens, mindfulness is a critical practice because I need to measure changes by inches — not miles — in order to define my autoimmune disease stage clearly and live as well as I possibly can. And this is where it can be challenging, especially for people who have not been managing their disease for very long.
Continue reading “How to Define Your Autoimmune Stage Clearly”