Live Your Life Outside Your Blog: Reflection

When I attended HealtheVoices16 in late April, I had some anxiety. I knew that many of the attendees were “giants” in the world of health advocacy . I wondered what I had to contribute. When I attended Trevis Gleason’s workshop on “Advocacy Offline” and he spoke on the importance of sharing our disease outside our blogs and community, I felt challenged.  I looked around and sat in awe at all the wonderful things my community leaders were doing to advocate for their disease. I needed to do more.

When I got home I got busy and asked for help from some of my community friends. 
Molly was my first guest and wrote about how blogging and using social media allows her family to know what is happening with her body while also creating online conversations with others. She also talked about joining communities and summits.  
  • My take-away: I am definitely no Molly when it comes to social media, she is AMAZING, but I do my little part in sharing with others. I had hoped I would feel more comfortable sharing more RA related topics on my personal Facebook account, but I have decided that I like having a little place in my life carved out for things that are focused more on my family and the happiness I gain from them rather than on RA. I have a blogger page to share RA information. I have definitely tried to improve my voice in the community since reading Molly’s advice and I am glad I have. I enjoy this and feel empowered by others.  

Angela shared how she has slowly been sharing her rheumatoid arthritis outside her blog and community by adding RA related hashtags to photos of everyday activities she participates in such as 30daysofbiking in April.

  • My take-away: I think I can do this pretty easily. If I am posting a picture on Facebook of my family and feel it somehow relates to RA or Chronic Illness, I can use a hashtag to represent that. I’m also trying to use Twitter more, even if I am a bit Twitter challenged, where these hashtags seem more natural.
Sallie has become part of the community by reading blogs and like Molly, joining health communities. Sallie joined a campaign at work where she was able to share her disease while also helping other organizations set up similar campaigns. 
  • My take-away: One of Sallie’s colleagues posted on Facebook that she wasn’t aware of the difficulty Sallie experiences but after a difficult pregnancy, she has more understanding for Sallie. This left a huge impression on me. By sharing my disease, I am not only helping others learn about my disease, but I am helping others to have more empathy towards EVERYONE that surrounds them. We each have challenging lives with stress, anxiety, illness, financial and relationship issues. By sharing that I am having a tough day, perhaps I am opening up someone’s eyes to the fact that just because a person may look fine and is smiling, it doesn’t mean everything is hunky dory.    
Lene, being in a wheelchair, is naturally sharing her disease outside of her blog all the time just by living life. What I really liked is when she said, “Kids will freely ask me questions and once the questions have been answered, move on to other things.”
  • My take-away: When I am having a flare and it is obvious something is going on, I am going to make a conscious effort to use a more kid-like mentality that if I share, people will move on. (I don’t like a lot of attention when I am in pain.) But as Lene said, “I believe that we are taught to avoid the unusual, such as people with a disability.” I have definitely noticed this when I have had a serious limp, people want to look away, yet they can’t. Maybe by breaking the ice and sharing what is going on with me rather than letting people just wonder, I can open the lines of communication about disability. 
Overall, this last month of reflecting on how I can better share my disease outside my blog has been powerful.  I have had to really look closely at who I am, what I am comfortable sharing and doing, and what makes the most sense for me. At HealtheVoices16, I felt anxiety the first night sitting in my hotel. But as I met new friends with various illnesses, I realized that in my own quiet way, I am making a difference. I felt I belonged. My way might not be as powerful as others or reach the same numbers of people, but that really isn’t who I am. It was when I bought an RA t-shirt this month thinking it would be an easy way to share my disease outside my blog that I realized I am trying too hard. Wearing an RA t-shirt isn’t me. I have to live my disease the way I live my life, quietly and on terms that make me feel 100% comfortable. How and when I share will be on ongoing decision I make at the time. 

Disclaimer: While all thoughts and opinions are my own, my travel expenses were paid for by Janssen. 

2 thoughts on “Live Your Life Outside Your Blog: Reflection

  1. carlascorner

    Well, there's a reason you get selected for blog awards and are asked to participate in organizations like Joint Decisions and HealtheVoices — you definitely do make a difference. If you question that in the future, just ask me. 🙂


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