It seems lately that I am continually encountering people who simply know nothing about RA. Normally that does not phase me one way or the other. I often take the opportunity to educate them a bit (how much depends entirely on the circumstances) and for me that has always been the perfect way to respond without being too overpowering.
My rheumatoid arthritis summary
Don't get me wrong. The temptation to go on at length about the specifics of RA can be pretty strong. I have worked very hard over the years to overcome this desire to the point that it really does not even enter the picture anymore. I am content to simply give my "elevator speech" version and move on, content in the knowledge that at least one more person now has at least a basic knowledge of RA, however simplistic it may be. Further, it reassures me to consider that if that person runs into someone with RA down the road they will at least know what RA is and spare them the same blank looks.
But of late, the level of ignorance and the corresponding remarks are eliciting some really angry feelings in me that I have not experienced before.
Are they new or have I just developed a thin skin (literally and figuratively I am afraid) about this? Not sure to be honest. Maybe having this disease for 20 years now has meant that the accumulation of ignorant responses has pushed me to a new level. Perhaps it is just that people are more outspoken about their ideas and are simply less courteous. Finally, could it be that they actually enjoy bating people about their illnesses?
What you shouldn't say to someone living with RA
That is what it felt like when I was in a doctor's office a while back and someone asked, politely enough it seemed, why I was being seen. I assumed they just wanted to engage in some simple conversation. What came to light fairly soon was that this person felt that RA was not nearly as severe as I thought it was. It was after all, "just arthritis." They seemed to have some basic knowledge of RA but did not understand, or care to for that matter, that it was autoimmune in nature.
RA is a "fake" disease
"What does that mean?" they asked in a nasty tone. I started to give my best "elevator speech" but to no avail. I sensed that this person wanted to transfer some anger to someone, anyone and I was a convenient target. I tried to patiently resume my explanation but they would have none of it. They started on a rant about people abusing and overloading the system and essentially making up problems when there are people out there dying of "real" diseases like cancer. I took some deep breaths, decided that this conversation was going nowhere fast, there was no hope of changing this person's mind and simply excused myself.
The realities of life with rheumatoid arthritis
To be honest, that tactic felt great at the time. But later I wished I had been a bit more emphatic about the true nature and scope of RA. I was mad at myself for letting them off the hook by leaving and not sticking around and trying harder to get through to them. This was the first time I had any regrets about how I handled a situation like this. I fantasized about saying back to them "EXCUSE ME! but you have NO IDEA what RA is or how it affects my life every minute of every day! EXCUSE ME but RA is a painful, progressive, life-changing disease that takes a mighty toll on my life. EXCUSE ME but try not to be so rude and judgmental the next time you meet someone with RA!" Just the thought of saying all of that was kind of freeing.
No response can be the best response
That is when my good sense took hold again and I realized I would not change a thing. By responding in kind I would have been just as rude as that person was. And of course we all know that any educating I might have hoped to accomplish would be gone, replaced by new and even angrier conclusions they would grab unto all but ensuring a continuation of any resentment, appropriate or not, that they have. Finally, I also realized that most likely this person is in the midst of a very difficult time either for themselves or someone they care deeply about. That can influence the way you respond to any type of situation. I am choosing to give them the benefit of the doubt and by so doing I am following my own principles of civil behavior.
Trying a more positive approach
Not long after this situation I had a similar, though far less intense, comment made and simply by working through my potential response from the last time I was nonplussed, even invoking the "you catch more bees with honey" strategy. I smiled and simply said that perhaps looking into the facts about RA, easily available in print, online, etc., they might better understand the true nature and avoid jumping to conclusions that might be offensive. They reacted quite nicely, saying they never intended to say anything hurtful but they surely could understand how it might be taken that way. They insisted they would not be so presumptuous in the future and thanked me for being so kind in responding. Well... that was sure nice.
I have a whole new outlook on how best to deal with these types of situations. I suspect that from time to time I may still revisit my "fantasy response" but only in private.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?