Twitter brings us together

Everyday that I use Twitter is another day that amazes me. I originally signed up close to when it began. I never really got it. Most of my friends and family are not technologically inclined. Luddites. I'm not obsessed with celebrities. In fact the coverage most get irks me. The one thing I do like is tech news. Obviously they were all over Twitter. Then I gave up work due to my health.

I got bored. I decided I would start this blog. To promote it and let others know it existed I setup a Facebook page (I still don't think I have any friends on it. I keep my real life separate from my "scleroguy" persona and I'm not really a fan of Facebook so don't actively seek friends.) and Twitter account. It took me awhile to actually get to know how  to use it, and I'm still learning how to be honest. I learned about hashtags, keywords preceded by a #, and discovered the amazing people/groups of the chronically ill and rare diseases. I'm more active on twitter now then this blog.

I never had a use for the support groups. I wasn't a typical scleroderma patient. I was a young male not a +35 woman. As nice as they may have been, I never actually went to any meetings, I assumed they wouldn't really relate to or be able to help much with my situation. They wouldn't be able to help with the inevitable conversations with my buddies that I had where I had to explain why I couldn't horseplay, party, go camping, bar hopping, friendly fighting and so on and so on.

I'm positive, to the extent I can be, and I'm stubborn. I'll fight to open a jar for as long as it takes. It may have to be excluded from the meal I was opening it for but I'll open it. I've come to learn, I'm not alone. The community on Twitter is amazing. Between the patients and the advocacy groups I feel more connected to people in similar circumstances then ever before.

I've learned about other medical conditions I had no idea about and have found the people in those groups just as uplifting and encouraging. Twitter brings together those of us with rare diseases. It gives us a place to come together and to learn from each other, without the horrors of a google image search. To support one another, in good times and bad.

The one thing I would like to see? Our doctors. The learning opportunities are obvious. Likewise the support and advice they could give that would reach far more patients then they could see in a day in their offices. I've decided to design an invitation for my doctors to invite them to join this amazing community. I will, of course, announce it and post the invitation for others to use.

I look forward to watching the community grow. To making new friends. Learning more about other diseases and my own. Helping others newly diagnosed and so on and so on. Sick but not weak, we are not alone.