First Post: Introduction to My Fight

Posted on: May 6, 2011

Hi! Thanks for taking the time to read this blog. I am currently 26 and live with my fiance in one of the boroughs of NYC.

I decided to write this blog because there seems to be a real lack of resources and support for young people living with chronic pain, fatigue and everything else that comes along with a chronic illness. I was born with this a disease that took the first 3 years of my life to diagnose. I have been told that those first 3 years of my life were stressful and heart breaking for them. Their first (and only at the time) was always cranky and they couldn’t seem to console me. In the mid 1980’s Doctor’s told my mom that it was growing pains and I’ll get over it. Going even further to tell that they should discipline me more so I wasn’t so moody.

In that time we moved from Florida to Connecticut. Doctors visits after Doctors visits and batteries of tests were done. This wore my parents down until finally an answer to their question. The answer was bittersweet. They knew what was causing their daughter to be so uncomfortable, but now to deal with the diagnosis.

Juvenile Rheumatoid Arthritis (JRA)

A 3-year-old with a rheumatic disease was rare and it took a lot of persistence on my parent’s part to get people to believe it.  23 years diagnosed and it’s not much different.

Only now I am an adult who doesn’t always look “sick.” Should I apologize for that when people are accusatory about why I’m so tired or can lift something just because I don’t look the part? Well of course not, but some people feel like they are owed something from me. That, along with constant pain and fatigue is a constant struggle for me.

I am hoping this blog, over time, provides me with the strength to navigate the difficulties of this disease and maybe some support to those fighting against the same oppositions.

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