Community – Our community is often hard on each other, even going as far as accusing others of not having RA when they can physically do more than others. How can we educate our own community on RA and how it affects each one of us differently.
Personally, I am thrilled that this topic was chosen by the community and cannot wait to hear what others have to say on this topic. It is one that honestly confuses me. As a community, we often share that living with an invisible disease is frustrating because those closest to us don’t understand our condition and we often feel lonely. We seek understanding. However, I have seen friends leave our community, even considered it myself, after rude comments or bullying by others with RA because they treat their autoimmune disease differently or because they happen to have responded well to their medications and are able to physically do more. In some cases, they are even accused of not having RA at all!
I have come to the conclusion over time that if ones RA does not act like that of others and is not treated in the same fashion, they are made unwelcome by the community. This doesn’t make sense to me. Like anything in life, the spectrum of where one’s RA lies is huge. I have experienced it myself. For years I was diagnosed with severe RA, unable to do daily chores, wondering if I would work again to now being diagnosed with moderate RA and able to do just about anything when I keep in mind that I have RA and don’t overdo it.
I would like to share an article I wrote for HealthCentral on the topic.
Your RA is Not My RA: Educating the RA Community
We have to always guard against generalizations. I will be anxious to read what I wrote of this prompt. I may be to prescriptive, but I am listening. Cathy, it is the human tendency to minimize others and normalize our own experience. In this community that is a terrible tendency.
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