As a means to vent her frustration about her life with chronic illnesses, in 2012, Ms. Conway started the blog “As My Joints Turn: My Autoimmune Soap Opera.”
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“Initially, it was a way to get my thoughts and feelings out,” she says. “Eventually, other patients started to find it, and suddenly, I had a following. It’s comforting to write about a difficult day and have a bunch of fellow patients understand me. It’s a big comfort to know I’m not alone.”
Ms. Conway also joined autoimmune and arthritis groups on Facebook to find like-minded people facing similar challenges. “They give good advice or just listen when I need to vent,” she says. “Some of my online friends understand me the best.”
Throughout her career as a speech-language pathologist, Ms. Conway has advocated for her clients’ rights to education and accessibility. She has attended rallies for education rights, contacted state government representatives regularly and participated in awareness campaigns for autism. At one point a colleague remarked, “Wouldn’t it be great if someone advocated for you the way you do for your students?”
This was a light bulb moment for Ms. Conway. It began her journey as a patient advocate.
Through social media, in 2013, Ms. Conway learned about the ACR’s Advocates for Arthritis, an annual event held in Washington, D.C. Since then, she has participated in the event three times. She has joined with rheumatologists and other patients to speak to members of the U.S. Senate and House of Representatives about the needs of rheumatology patients.
“Many politicians know the cost of drugs and the need for research, but they don’t truly understand the day-to-day needs of most rheumatology patients,” she says.
Being an advocate has changed her life. “It helped me stop having healthcare happen to me, and instead start having healthcare happen with me,” Ms. Conway says.
She explained to a healthcare aide in Rep. Patrick Meehan’s (R-Pen.) office that some drugs don’t work for certain people and that making patients go through the step therapy process is antiquated. Personally, Ms. Conway tried six different medications over a seven-year period before she could get a biologic drug that worked for her. The drugs that insurance companies deemed safer and more cost effective were actually ineffective for her.
“When I [started to] take a biologic drug on a higher tier level, I felt much better,” she says. “Politicians need to understand this. I want to be the voice that helps them understand.”