The story of the little girl who was diagnosed with a rare eye disorder after her mother posted a picture of her on Facebook went viral. There are many more stories in the rare community like that, too many stories. For now, our relationship with the medical community will remain frustrating, at best. So how do we cope when the people we are taught to trust with our health don’t have the answers? Where do we get our support? Where do we get our information? Facebook.
Very recently, I had a disc made of my daughter’s MRI. I couldn’t wait to put it up in her disease-specific group and have the “experts” look at it. I had already been in the group a few weeks and was floored by how knowledgeable these people were. I was new to this latest diagnosis. I haven’t started doing any real research yet. I thought I was done. I thought after 16 years, nothing new would crop up. She would have some physical issues, but she would have a good life. A very good life. Things have changed, at least for the immediate future. Now, I’m in several new Facebook groups that are related to her latest diagnosis. I don’t comment much, but I am soaking up what everyone is saying and comparing it to my notes on Olivia.
Most people would argue that running to the computer to google medical information is a bad idea and in many cases, it is, but if you live with or care for someone with a rare disease it is invaluable. When Olivia was diagnosed 16 years ago the first thing I did was go out and buy a medical dictionary. Now, I’m more internet savvy. I regularly read medical articles, even compiling information from several different studies to compare the 40 people in the world with a certain disease. No one will probably ever use this information, just Olivia’s mom trying to make sense of her latest diagnosis.
But, I am not alone. I can hop on Facebook and post something in one of the groups I belong to and almost instantly I get sound medical advice, hugs, laughs, prayers and dozens of people I don’t know lifting me up. I have learned so much from these amazing patients and parents. We are connected. We are connected by a rare disease. We are connected by location. We are connected by community. We are connected by our journey. We are connected by social media.