I spoke at a pharmaceutical conference recently. They introduced me as a “Health Activist”. One of the pharmaceutical reps asked me what made me decide to become a health activist. I wasn’t sure how to answer because I don’t really see myself as an “activist”. After some though I said, “I realized health care had to stop happening to me and start happening with me.” It was off the cuff but that statement made a big impact. A man sitting next to me told me to trademark the sentence. Instead, I posted it on Twitter and was shocked at how often it was retweeted and favorited. I thought I might be on to something, so I began to reflect on my journey with RA.
Being a patient, requires patience. That is a trait many sick people find wears out quickly. When my symptoms first popped up, I sat patiently waiting in doctor’s offices, waiting on blood test results, waiting for medication to work. The waiting took it’s toll because the more I waited, the more pain I experienced. The more my body broke down. I was barely walking and my arms were practically useless. My lowest point occurred in 2002. I was sitting in my car outside of my grad class. I was so exhausted from working all day, and the drive to campus that evening, that I couldn’t bring myself to get out of the car. I called my rheumatologist’s office and his PA got on the phone. I asked her when the medication was going to make me feel better and she replied, “It took you a long time to make yourself this sick, so it will take you a long time to get better.” I’m a patient person, but that statement broke something in me. She basically blamed me for my illness. It was then that I fought back. I fired that doctor (& his PA) and found a rheumatologist who actually listened to me. She treated more than my blood work by treating all of me.
Thirteen years later and it’s not always easy but I’ve learned to participate more effectively in my health care. I have good days and bad days. Today is so bad that I can’t eat dinner due to nausea caused by pain. Yesterday, was great. I fill my doctors in on my status, the good and the bad. I speak with pharmacists about possible side effects. I speak with therapists to better deal with my diseases. I advocate for myself when I need to. I speak out about life with RA because I believe there needs to be a change in how people living with autoimmune arthritis are perceived by both the public and medical community. I’m one small voice, but collectively the #rheum community can be heard.
I don’t care how people refer to me anymore. Patient. Cofounder. Health Activist. Pain in the A**. I’m fine with all of that. When it boils down to it, my diagnosis does not define me. Nor do the labels. I can only be me, a woman living with RA and the resulting struggles. I can share my experiences and hope it helps others on their journey. What have I learned the most over these 13 years is that change doesn’t happen by being patient. Change happens when people lose their patience and stand up to be heard.
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