There are a few people with whom I can be completely open and transparent about the impacts of RA on a regular basis. There are others who are on a “need to know” basis. And then there are some from whom I try to hide my symptoms mostly from fear of being misunderstood, judged, or penalized. Being in a place where treatments are not working and symptoms are significantly impacting daily life and work, it’s much harder to follow this approach.
A while back, someone sent a note to my blog expressing the notion that my approach to writing about RA was too negative and that they had lived with RA for many years and got along just fine. It’s wonderful that this person has this experience. But that has not been my experience nor is it the experience of a large proportion of people with RA. This comment prompted me to go back and reread my posts reflecting on my journey over the past few years. While many posts were about research related to RA, there were personal posts of celebration along with posts describing the realities of symptoms and treatments.
The Rheumatoid Patient Foundation just published a white paper about the results from a patient survey. The results of this survey clearly paint a picture of patients regularly experiencing symptoms that impact daily life in spite of receiving treatment. The collective voice of patients is critical for developing and implementing effective treatments.
The idiom “turn a blind eye” reportedly came from an admiral who refused to withdraw in the heat of battle. Using this approach in medical situations can lead to serious consequences. Read this excellent article from the Center for Bioethics and Human Dignity at Trinity International University on the topic.
I can’t turn a blind eye to my own RA symptoms, its impact on my life, or the impact of RA on millions of sufferers in the world. Therefore, I vow to accurately share my experiences with those around me as it is appropriate and with the online community via this blog. This will be done in as balanced an effort as possible.