I know that sites like PatientsLikeMe have been a huge success and really brought together similar patients to share in their healthcare journey. It’s an incredibly powerful thing to have a supportive community there to help you. It’s even more powerful if it’s someone who understands specifically what you’re going through.
This was the thought I had today when I tried to show some sympathy to Tiffany (better known as @TiffanyAndLupus):
I feel your pain! That's awful. I had to do that once for a neck injury. My only saving grace was NFL football. https://t.co/p7FAuUefYL
— John Lynn (@techguy) July 22, 2015
I don’t really know Tiffany. I’ve just seen her tweets occasionally since I follow her. When I saw the above tweet, I had to respond with my own experience. Hopefully the interaction will help distract her from the pain and trouble. She favorited it, so I’m going to assume it helped…even if just for a second.
While my tweet might not mean much to her, Tiffany is the founder of the #LupusChat and so she’s well connected to a community of people who understand Lupus much better than I do. It’s hard to underestimate the power of community in our lives. We all long for it. We want to belong. Belonging and being loved is a great thing no matter your state, but especially if you have a health problem.
The beauty of Twitter is that you can find just about anyone on there. There may be some edge cases that are hard to find, but even then you can find supportive people who are in similar positions and can’t find anyone with their unique disease. I think that’s powerful. It’s one reason I love Twitter.
While many topics on Twitter get heated and brutal, I haven’t seen the trolls come out nearly as bad in the chronic care communities. Most of them are very supportive of each other and the health challenges people face. For the most part you see compassion in action. It’s beautiful to watch.
As I was writing this post, Tiffany replied to my tweet and I replied back:
Well, you can't glitter and craft laying down, but you can Pinterest. So, start planning your next projects! 😉 https://t.co/XUUMhKrKZV
— John Lynn (@techguy) July 22, 2015
I’m not sure the impact of my tweets on Tiffany. She might not notice a difference either. However, she’s brightened my day and made me smile. As is usually the case, those who extend the hand of kindness often receive the most in return. How could you not appreciate health a little bit more when you read tweets like this:
UPDATE: Feeling intense pressuring pain in my lower back near biopsy site. Given pain meds every 4-5hrs as needed.
#Lupiffaniore
— #LupusChat | Tiffany (@TiffanyAndLupus) July 22, 2015