“Live Your Life Outside Your Blog: My Challenge.”
by Cathy Kramer
My first session at HealtheVoices16 was with Trevis Gleason, author and chef who also lives with MS and spoke on Advocacy Offline. Gleason left those of us at HealtheVoices16 with a lot to think about, but for me, he also presented me with a challenge. Gleason shared how his cane often leads a person to ask questions which in turn starts discussions. Those discussions create education/awareness for those outside our blogs and communities which in turn allows the education of chronic illness to grow. A bonus is that with awareness, more and more people are able to help one another. I love this idea, but honestly, sharing outside our community isn’t something that comes naturally for me which is why I now feel challenged to do it.
I am a private introverted person. I like mulling over my thoughts and feelings and then letting them go. My blog is generally the mulling over phase. But otherwise, I keep my personal issues to myself or a small handful of people. Of course most people at work, including my past and current manager, are aware that I have rheumatoid arthritis (tough to hide when you are limping around), but I purposely keep a personal Facebook page and a Facebook blogger page so that I am able to live two separate lives. It isn’t that I am ashamed of my disease, because I am not, but more that I don’t want it to be the focus of my life. I already have to constantly remind myself that RA is not my main identity. It is a part of many things about me. Plus, depending on where my rheumatoid arthritis is that day, I sometimes feel vulnerable when people ask me about it. Knowing this about myself, my challenge is to find a balance that allows me to grow in all areas of my life, but to also share my experiences with rheumatoid arthritis outside of my blog so that others can also learn to share their experiences safely.
Recently Gleason’s wise words, “when we expose our condition, it starts conversations” became reality. I was walking back to my classroom the other morning when a colleague mentioned that she really enjoys my blog and has shared it with others who live with RA. What??? So, while I do try to keep my two Facebook pages separate, I have shared a few things such as when I received Healthline’s Rheumatoid Arthritis Award, becoming part of the Joint Decisions team and the exciting things we have done there, and when I participated in HealthCentral’s Live Now Live Bold project. The Joint Decision posts on my personal page were easy because the focus wasn’t directly on me, but our group as a whole. When I shared the Health Central piece, it was very intimate. I shared stories that were more difficult to relive than I thought they would be. I really debated whether I wanted to share this story on my personal Facebook page, but upon completion of the project I felt extremely proud of all that I have accomplished over the years and nervously shared it. I was surprised to hear from Facebook friends I have known for years that they also have rheumatoid arthritis or have family members who are living with it. Family members shared it and several people also commented they have RA which my family never knew. It started the conversation.
My life with RA is has been extremely tough at times, but it has also been wonderful at other times and one of my main goals on my blog has always been to share that there is more than pain and limitation to living with RA. I need to start those conversations so more people are aware that it can both. I want people to see me doing fantastic things in my life but to also be aware that I struggle some days. I want people to know that it isn’t necessary for someone living with a chronic illness to have obvious marks of disease in order to have the disease. A co-worker once said, “But your hands look fine.” I blew off the comment, but this would have been an ideal time to briefly and gently share more about life with rheumatoid arthritis because if I don’t share it, how can I expect a person to know? My challenge is be more open with my disease offline. I need to share not only so others know they aren’t alone but so they too can feel free to share their story. The more we share, the more we know we are not alone. For me, it might start with a few more posts about rheumatoid arthritis on my personal Facebook page or sharing with a co-worker that not everyone with RA has wonky hands. I could even be really brave and show her my wonky elbows. From there, who knows?
To help me with this challenge, I am focusing on the theme of “live your life outside your blog” in honor of Arthritis Awareness Month. I have asked several people in our community to share their stories of living life outside their blog or community, so please look forward to those each week. Along with reading Gleason’s new book, I am hoping to gain some insight from these bloggers into how I can bring better awareness to rheumatoid arthritis (RA) and other chronic illnesses.
How do you share your disease offline?
*"Live your life outside your blog" theme is my interruption of the session given by Trevis Gleason at HealtheVoices16.
My travel expenses to HealtheVoices16 were paid for by Janssen. All thoughts and opinions are my own.