*WEGO asks:
Was starting your advocacy journey a hard
decision? Were you anxious and hesitant or were
you excited and ready to share your story? Tell us
how you chose to start advocating for your
condition.
Advocacy in the realm of autoimmune disease was a fluid and natural process for me. My daughter, now 26 years old, was diagnosed with Juvenile Rheumatoid Arthritis at the age of 2. I had spent her young life learning about rh factors, ana tests, and a plethora of other acronyms and abbreviations pertaining to her disease.
When Alesha was diagnosed, I felt incredibly isolated. It was such a difficult place to be because I struggled with undiagnosed clinical depression. (It would be 8 more years before I realized that diagnosis), but my little girl needed me, so I stepped out of that random and very dark place to tackle the beast called Arthritis(JRA).
Such a motivating factor gave me a feeling of power like I could divide and conquer anything! The world wide web arrived one year after my daughter was born, but it was certainly not the internet we all know now, and it wasn't available to me at that point anyway. I researched by visiting hospitals and doctors, joining the Arthritis Foundation, and calling other parents whose children had JRA. So, I gathered and shared the information with anyone who would listen, especially other moms.
Fast forward to 2014, and JRA is now considered Idiopathic and called JIA. I am diagnosed with Psoriatic Arthritis, followed by Fibromyalgia soon after.
The advocacy for these conditions began almost immediately, although my voice has been punctuated by the symptoms and struggles associated with my conditions. I loose ground sometimes, but always come back. There is a consistent voice in my head that finds its way back every time. I believe that voice is my daughters; after all, she was my muse for advocacy.
#HAWMC #WEGO #JIA #PsA #Psoriasis #Fibromyalgia #ChronicPain #GrammiesDoubleWhammy
*WEGO Health is a network of over 100,000 of the most influential members of the online health community. We are bloggers, tweeters, pinners, and leaders of Facebook pages — we are the empowered patients that drive the healthcare conversation online, across virtually every health topic and condition.
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