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.
- 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.
- 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.
- 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.