The Oscars

While I was watching the Oscars last night I was reminded of a book I read last year by a fellow Rheum warrior Christine Schwab called, “take me home from the oscars.”   I won’t get into an excessive synopsis of the book, but if you or someone you know has been diagnosed with Rheumatoid you should definitely give it a read.

I remember getting this book because some of the bloggers and tweeps I knew had recommended it and being the procrastinator I am, I decided to pick up a book to read for fun whilst in the middle of finishing my undergrad thesis.  I absolutely loved it.  For me the book was a lot more than just a good biography that was interesting and well written, it was also a liberating book to read.  I have always heard how people say it helps children and adults alike to see people like themselves represented in the media but I never really understood this explanation fully. Then I read this book.  For the first time this my diagnosis I actually felt like someone out on the world understood what this journey was actually like.  I felt like maybe all this pain and nonsense wasn’t in my head (like I had been suspecting because of doctors indifference, but thats a whole other blog post). 

It was a freeing type of feeling.  And yet at the same time so self indulgent.  Why did I think I was the only person in the world who could possibly understand the pain and suffering of Rheumatoid arthritis.  It had a lot to do with being in my self indulgent adolescence years, but also the fact that no one I knew, no one around me could understand it.  No one really understood the pain, the fatigue and the frustration that came with this diagnosis.  It was through reading about someone else’s pain, fatigue and frustrating that mine felt validated.  It was the first time since my diagnosis that I was able to put words to what I was feeling and it was incredibly liberating. 

I have progressed a lot in a year, but I am not free from taking steps back as well.  Although I am able to be more verbal with how I am feeling, I am still stuck in how to reveal to people my illness, and having the fear of coming off as a whiney self indulgent twenty something.  Most of the difficulties with my illness are self inflicted and that is something that comes with an invisible illness.  THe constant worry about letting people down, or what people will think is completely self induced, but that doesn’t make it any less real, or any less frustrating. I have been able to start putting more words and verbs in my sentences when describing my RA to people now.  And slowly, I am over coming my fear or judgement from those who do not understand.  I like to think this progress was in part because of this powerful book.  

So go give it a read.

Yours in Pain,

Ginny