RA Communication and Nonsense Conversations
When I was a child, I wanted to be a stuntman. I wanted to be the guy you see in an action film at the end of the fight sequence who gets lit on fire and kicked through the shattering window of a thirty-story building. When I was ten years old I used to practice on my backyard trampoline what this fall would look like, flailing and screaming to my camera faked death. At the age of fifteen, this dream knocked on my door. I had become part of a team of local gymnasts who specialized in the discipline of trampoline acrobatics, which is now an Olympic Sport. Our trampolines are huge, and bouncy as can be. We can fly twenty-five feet above the ground, with enough time to do twisting doubles and twisting triples, in a row. Our gym was a haven for other whacky characters, and we frequently trained with professional skydivers, freestyle skiers, and my heroes, the stuntmen!
One day I ventured to tell some of these high flying and wild stunt people my ambitions. They were pumped on my vision, and set me up with the right contacts to get started. When I met the woman who would track down work for me, she was smart, funny, and incredibly blunt. She browsed my pictures, watched a few of my videos, and asked me some questions. She then shook my hand and said something to the tune of, "You've got the skillset to get some work, but you need to get some real clothes, grow your hair out, and hold your body with confidence. You don't look like a stuntman." I was shocked. She was right.
When I went to my first audition, I could hardly sleep the night before. The build up to the moment of my dreams coming true caused me endless restlessness and anxiety. But the whole affair was a huge disappointment. I got a few minutes or less to tell the casting director a few things about myself, answer a few questions, and that was it. I wasn't prepared for that, but it is pretty standard. There are many potential applicants, and they must be sorted through to find the right look, attitude, and general image that fits the role. If you have that, then you get called back to perform the actual skills required and further evaluated.
In cognitive psychology, these images are called "availability heuristics." Essentially they are cognitive shortcuts that people use to make quick and immediate evaluations about topics, concepts, and people.
Most people when they hear the words rheumatoid arthritis are going to have an image that comes to mind of some sort. Likely, since it is a lesser-known condition, it is going to be way off. It frequently involves grandparents and osteoarthritis from my experience. Unfortunately, their quick evaluations generally do not match the reality of a disease that spans a huge array of people, ages, physiques, severity, and so on.
I am a walking contradiction for most people's heuristic of RA. I am thirty-four years old, male, and a lifelong athlete. I hear a bunch of loony nonsense all the time. Since being involved in the RA community, I have learned that hearing nonsense is so common, that when we get diagnosed, the doctor should just hand us ear plugs and say, "you are going to hear an endless parade of unwanted advice, suggestions, and stereotypes. I recommend you plug your ears!"
I have spent the last six years studying the behavioral sciences and psychology. Some things I have learned in those studios adventures have been helpful in dealing with family, friends, coworkers, and acquaintances when RA misunderstandings occur. Sometimes there is nothing that can be done because people are not interested in listening. I have had plenty of those frustrating interactions. The following are some examples of the times it has worked out.
1. Learn their way of thinking, know yours, and avoid the abyss in between!
My brother starts with conclusions, and ignores evidence. I start with doubt, and try as best I can to follow evidence. He is a good guy, and I love him. We are from different planets.
When I was first diagnosed, I shared the news with my immediate family. I did not call my younger brother directly, but he sent me a message. In short, he said that all diagnoses of medicine were an illusion, and that if I just believed hard enough that RA was an invention of greedy pharmaceutical corporations, I would be freed of the pain.
I was not liberated by his message. I was bothered that he thought my suffering wasn't real. Sending him scientific and reputable research, or trying to convince him otherwise, is a no start conversation. Neither of us speaks the same language, and I didn't want an argument. I sent him back a very simple message: "The profits of big pharma are absurd, but it would mean a lot to me if you would take some time to look into this. You know me, if I could think my way out it, it would already be done." The idea was to see some fragment of truth in his viewpoint, validate it, and then simply state how I feel and what I hoped he would do. I can't force communication across the abyss that divides our thinking.
The next day he sent me an apology saying that he looked it up online, and was very sad to hear what I was dealing with it. I was happy to have his support, which now comes with gifts of rocks and crystals that he says will help me. In conflict management this would be called a win-win, even though it was not exactly what I hoped for. I have his support, and he was able to work RA being real into his beliefs. I don't know how, but he did.
2. & 3. Avoid group polarization and use Socratic questioning!
Group Polarization is a general trend that appears in a lot of social science research. The essence is that when groups get together and argue about hot topics where sides are divided, many people will become more extreme in their opinions and less willing to think about other perspectives.
Socratic questioning was a method used by the Greek philosopher Socrates to discover truth, find hidden assumptions, or to follow the logical implications of certain beliefs. It can be a useful tool for critical thinking, and it is used in many cognitive based psychotherapies. Socratic questioning has an intended direction to it, like some brilliant lawyer who expertly leads the accused into admitting guilt.
I was at dinner recently with a good friend from my youth, let's call him Joe, and two of his friends, let's call them Jim and John. They all worked together, and are salesmen for an online software company. The four of us were headed to a concert. At some point, Jim said that he personally believed that if he focused on positive outcomes, like a successful sale, then they happened. He continued, saying that such an idea was so powerful, that if one focused correctly, and had the right mindset, that they could be cured of an incurable disease.
What Jim shared is called "the law of attraction." The word "law" is a misnomer. Jim did not know that I have RA. The literal implication of his claim about illness is that tens of millions of people in the world with chronic diseases are suffering only because they don't think about it correctly, and that physics, chemistry, and biology all need to be rewritten. I prepared my arsenal, having read about it previously, and starting thinking of all of the logical fallacies, anecdotal claims, and lack of evidence that this claim had. But then I stopped. The three of them all seemed to like the idea, and were nodding their heads. If I unleashed my verbal strike, would they hear me? Would it change their mind? No, they would probably dig into their trenches.
I decided to try Socratic questioning rather than charging in like a bull. I had to remember that no insult was intended, as he didn't know I had an incurable disease. I began with something like, "What do you think the result would be if you took the millions of sick people in the world, and taught them to think like this?" He hesitated for a moment, and then replied, "A few people might get better, but most wouldn't." I followed up with "why only a few?" He thought about it and said, "Well you are talking about millions of people, and I was only thinking about those rare few stories you hear of people miraculously being cured." I continued, "so on a large scale, it looks a bit different?" He responded, "Yeah, it starts to sound like voodoo hocus pocus." We left it at that, and had an awesome time at the concert.
4. Understand power, use your power!
If you go to college for a degree in the liberal arts, you will likely run into the academic obsession for the analysis of power. From the linguist Noam Chomsky to the French philosopher Michelle Foucault, the analysis of power pervades the social sciences. The main idea is simple: power is inherent in society, from the language we use, to politics, capitalism, war, surveillance, violence, racism, and sexism. The arguments that stem from this idea are less simple, and massive academic debates can occur over variations in the functions and maintenance of power. One idea that is pretty self-evident, and not the subject of much debate, is that power is inherent in relationships. When I am talking to my boss, the power relationship is different than when I am talking to my kids.
When I was in my Masters program in psychology, I heard a lot of whacky stuff. My program was a linear cohort, meaning that twelve of us went to the exact same classes together, four days a week, for two years. When I developed RA, everyone noticed. I came limping to class, and rather than being active and engaged, was lost in fatigue, exhaustion, and mental fog. The program director asked me about it, and said some inconsiderate things. She had control over my future, my grades, and my daily life at school. There was little I could do to leverage my power in that relationship. Instead, I went to my doctor and the accessibility counselor on campus to get legally binding academic accommodations for my illness. I fought the unequal power of the relationship with greater external power, and graduated at the top of my class with my head held high.
One day while slowly limping to the cafeteria, a fellow student asked me what was wrong. I told her that I had Rheumatoid Arthritis, and that I was in a lot of pain. She came back with one of my all time favorites: "Have you tried cherries? They are anti-inflammatory." I'm pretty used to hearing nonsense, but the audacity of others to assume they are in a position to give advice still bothers me.
I wanted her to know that unsolicited advice was not okay, and that though the power between us as students is equal, I have more authority on the subject of RA and my treatment. I replied as calmly as I could something to the tune of, "I spend hours of my time reading the research on what will help. My doctor and I know what we are doing. If you would like to do some medical experiments on the effectiveness of cherries in treating an incurable autoimmune disease, please do." She apologized, and seemed embarrassed. A few days later she told me that she didn't actually know what RA was, and that she felt stupid for saying what she did. I gave her a brief summary, and we finished the year without further incident or ill feeling.
5. It implies risks, and it is not our fault.
I never did get kicked out of that building while lit on fire, falling hundreds of feet to an airbag below. I still want to. I did get to live my dream job though, traveling, performing, and flying high. It was the opportunity of a lifetime, and I will never regret the many sacrifices it required.
Traveling and walking the line. Some risks I have always been willing to take.
Most athletes and acrobats I have known and worked with want to get things right on the first try, and want to do it with minimal risk. I do too. Nothing about that is realistic. Even when I do everything to the best of my ability, I might not accomplish what I set out to. I have always been willing to risk that.
Communication about RA involves two or more people, so there are natural limits on what one can do. I can try everything I possibly can, applying everything I know, and still be dismissed, misunderstood, and tread on. Some people have no desire to understand, and that is a harsh reality. I don't like it and it frustrates me. The lack of certainty inherently implies risks. I am not always willing to take those risks, and talk about RA with others. There are situations I have encountered where disclosing I had RA worked against me. I try to be judicious, and I try to correct the spread of misinformation when it arises. I am not ashamed of having RA, but it is an uphill battle when the disease and the struggle are often invisible, and people have negative beliefs about illness and those who live with it. When others do not understand, it is not our fault.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?