Sunday, January 8, 2012

Socail Media and Chronic Illness

January 13th, 2011 my life turned upside down. I have spent the better part of the last year waiting. Waiting to get into see specialists, Waiting for test dates, Waiting for test results and waiting for Dr's appointments.

Having been diagnosed with Auto-Immune Diseases in the time of the social media has been a blessing. I am sure not many people stop to think about that but then again I am not most people. At one time individuals like myself were left feeling alone and isolated. Never knowing another with the same diagnosis. Today we can join any forum, follow bloggers, find others diagnosed with Rheumatoid diseases on Twitter by following the hash tag #Rheum, Facebook has groups etc. the support and understanding is everywhere. No longer alone, we can compare medications, share ideas for pain relief, product reviews and find out how other people manage their symptoms, medication side effects and day to day living. Everything you wanted to know is out there, with real people who will eventually become friends that we cannot imagine our days without even though we have never actually met. Finding these pages is like being thrown a life raft out in the middle of the ocean where we feel we are drowning in our diagnosis, symptoms and medication side effects.

I cannot imagine dealing with my diseases without social media and the information and friends it has brought into my life. It is not just for business it brings people together in a way that nothing else has done before it. It has made the world a smaller place. It has also allowed for us to compare our Health Systems that vary by Country and then again by province or state. I am blessed to live in Canada where all of my Dr's appointments and 99%  of my tests are available to me free of charge (our taxes go towards this each year). With diseases like mine if I lived in the US I would be broke. I am not a wealthy individual by any means. I could not afford to pay for the health care that I receive. In having the type of health care that we have available to us in Canada  there are prices that we pay. We wait 3-6 months to get an MRI and then another 2-4 weeks for the report to get to my Dr's. It is this process that has left me undiagnosed for as long as I was. My dr's believed I had MS so all of the MRI's were necessary to confirm that diagnosis. I needed 1 brain MRI and 3 spinal MRI's that I waited 5 months for and then they were spread out of a two month period. It basically took 8 months to rule out MS before we got back to a new Rheumatologist who did the proper tests and was able to diagnose. If I had not been waiting so long for those MRI's and their results I could have had my diagnosis and treatments much sooner than I got them. I have extended health insurance that pays for my splints, medications and most anything else I might need.

I honestly do feel that I am truly blessed to have won the birth lottery being born in Canada. However when I listen to my neighbours to the south I either get angry that they cannot afford their medical care and do without or I become frustrated. Wishing we had the option to pay for our tests that we want done such as an MRI's. I even contemplated going to the US to have my MRI's done. They could have scheduled me in within a week and I would have had my answers. Instead I waited, waited and waited some more because my tests were scheduled and not too far off now and I did not feel there was an urgency. If I had of felt that urgency then I would have gone. The only urgency I felt was a very strong desire to KNOW for sure what was wrong with me. I was sick, tired and so very concerned about what the future would hold. It would be nice to have the option to pay for MRI's and have them done here at home without the wait list. It would make our wait lists shorter if we had that option as I am sure there are a fairly large number of individuals who could afford to have them done and would make the choice which would benefit more than just that individual as it would open up a spot on the long wait list as well. I think there has to be a happy medium somewhere between our two health care systems that would make things better for everyone!

Without social media we would have no idea the struggles of our fellow RA'ers. Having to make decisions between tests and medication vs. a roof over their heads and food in their stomachs. I had no idea it was that bad. I have come to learn so much. Thanks to Social Media for putting all of us individuals together, making the world a little smaller and allowing us to get to know others who are going through the same or similar things. It is a wonderful feeling to know that I am not alone with this struggle. That if I want to go to a place where I am understood, need advice or just to not feel so alone my friends are the click of a mouse away.

Who knew that Social Media would make such a difference in my diagnosis. I didn't but then again I should have known. Every time the Dr's threw a diagnosis on the table to explore I came to the internet for information. Once I had a diagnosis I found the most amazing people so quickly. I am truly blessed and have to thank social media for allowing us a place to get together and get to each other. Not something I would have ever thought of had I not become chronically ill.

How has social media made a difference in your life? Has it helped or hindered you? What social media types do you use? Is there one out there that I have not mentioned? Please share your experiences!

Looking forward to hearing from you.

© 2011 Rhonda

No comments:

Post a Comment