Another World MS Day has come and gone. This year the theme was Access and a lot of initiatives were organized around it. On the official website there were cards and posters we could print or send to thank the people who are breaking down the barriers to access – the people who are making it easier for us to live with MS. The hashtag #StrongerthanMS was the motto, as in together we’re stronger than MS. Social media was flooded with messages. But as I went through hundreds of posts on Facebook and Twitter, I started feeling a bit concerned.
As much as I love the idea of focusing on the positive and expressing gratitude (how often do we remember that we also have amazing and wonderful people and things in our lives?), I also worry that we’re sending the wrong message. Scrolling down my news feed I saw so many photos of smiley happy faces holding cards and posters that if I didn’t have MS and didn’t know what this was about I might have thought people with MS are doing great, things are improving so much for them, so there’s not much to worry about. And we all know that couldn’t be farther from the truth.
Another thing that got me thinking is how successful are we in making our voices heard outside the community. Every time there’s an awareness month, week or event I get the impression we only reach our friends in the chronic illness communities. Again, there’s nothing wrong with that. Chronic illness is something that isolates us. Especially with MS, because no person with MS has the exact same symptoms as the next person. I personally love to share stories and learn about other people’s experiences, challenges and rewards. But unless we have friends in the media, chances are we’re not making anyone else care. And that’s not really the point, is it?
So I worry about what we can do about this. But then again, I am a worrier. I even worry I might not be making my own friends care. So do tell me if I’m worrying too much. I would love to hear your thoughts and comments on this topic.