Like a Broken Record
The conversations are predictable; brief sound bites that get repeated again and again, though the speaker frequently changes:
"Are you sure you have arthritis?"
"You are too young to have arthritis."
"We all have arthritis."
"Have you tried x, y, and z?"
"You shouldn't take those meds."
"Just believe you don't have it, and it will go away."
Though unsolicited advice gets repeated in the most uninspiring form, on occasion I hear triumphant music:
"What is rheumatoid arthritis, and how it is treated?"
"You mean the autoimmune disease? I am so sorry. When did this happen?"
"I know a bit about RA. What is it like?"
Unfortunately the monotonous and haphazard suggestions based on erroneous understandings far outnumber the brief flashes of authentic and real conversation. As I have learned from being involved in the RA community, unwanted and unsolicited advice from people who do not understand the disease is a common phenomenon. The general impression I get is that I must thank people for their concern, and seriously consider their proposals. I don't buy it. I personally find it audacious for someone to offer medical advice about a condition they do not have, of which they know very little or nothing at all.
For those struggling with an autoimmune disease, life could be better in infinite ways. If our own bodies have turned against us, let us at least have the kind and loving support of our friends and family. My experience is that having rheumatoid arthritis can result in many misunderstandings, even among some people in my close circle.
I try to view pushy people on a spectrum. On one end, regardless of what I say, I will not be heard or listened to and the pushiness will continue for as long as I engage them. On the other end are people who, though they push their unsolicited advice, will stop doing so when I ask them to. Somewhere in the middle are people who will not respond to my simple request that they cease and desist, but will stop when they realize they aren't getting anywhere.
Recently I discovered something that works moderately well with this middle group of people who don't listen to my many protests, rebuttals, and well-argued refutations. It is called "The Broken Record." It comes from assertiveness training, which is a method for teaching people how to better speak about their own interests in situations of conflict. The idea is to calmly and confidently state one's position, and then to continue restating it in the same manner, no matter what the speaker comes back with. Basically, try to sound like a broken record.
As an example, I have received suggestions from people who were really just trying to sell me products they have some investment in. I live in a state where there is a plethora of multilevel marketing companies. There has been a boom here in health supplements, drinks, and various other products over the last decade. Because of that, I know many people who are selling things, and friends are their target customers.
When I say, "no thank you, I am not interested," they tend to respond with "it might help," or "I know someone who recovered from disease x, y, or z because of it." In the past, I have either refuted their statements by explaining the difference between anecdotal claims and evidence or just said that my doctor and I are working on it. Unfortunately, my rebuttals often land me further into a conversation I don't want to participate in. The broken record method is to not take the bait, and reply just as calmly, "No thank you, I am not interested." If they continue to push, just say it again and again until they get the point. The idea is to leave the person with absolutely nothing to come back with. So far I have had some moderate success with this method.
Unfortunately even in my immediate family, there are people who do not stop giving unsolicited advice no matter what I say. Never mind that I am the most educated in my family, live with the disease, and spend a whole lot of time reading about it, they want me to seriously thank them and follow their advice. RA is hard enough to live with, I don't need arguments and unsolicited advice from the people I love and care about every time we get together. At the same time, I want and need their support. It certainly can be a tough situation with no straightforward answers.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?