Hello? Is Anybody Listening?
Written on May 18, 2014 by Daniel P. Malito
“Once more unto the breach, dear friends.”
I have been writing this blog for many years now, and I have been fighting for arthritis and awareness almost my entire life. As many of you know, I have even written an autobiography about my life living with the disease. All of this is mainly an attempt to help spread the word about autoimmune illness and rheumatoid arthritis. Some days, I think it’s working, too, especially when I receive emails or messages that explain how much my blog, book, and website have helped to educate and comfort those with autoimmune ailments and even those who remain untouched by disease. It is a great pleasure to know that my work is actually having an effect on the public.
Unfortunately, no matter how many positive signs I receive, I can still be cut down by a single negative comment or event. This is what happened to me a few days ago. I was speaking with someone whose comments underscored the ignorance of the public. What makes matters worse is that this particular individual should have known my work and me well enough to realize the error of his statement. Ultimately, though, it is a sign of just how pervasive and insidious the misinformation and ignorance about arthritis is when it comes to the majority of the public.
It happened in such an offhand way, too, that I almost didn’t catch it. A few days ago, I was visiting a local restaurant, a place my fiancée and I frequent. We love the food, and it isn’t too expensive (we are saving for a wedding, after all). As we were escorted to our table, out of the corner of my eye, I spotted an old acquaintance. Now, at this point, he know I saw him, and I knew that he knew that I saw him, so I had only two choices: totally ignore him and pretend that I was either drunk or blind the next time I saw him, or go over to his table and give the obligatory meet and greet that we all do when we run into someone. I chose the latter, simply because it would be less awkward then making up an obviously false excuse the next time I saw this person. I told Allison I’d be right back and I went over to his table.
Of course, as soon as he saw me coming over, he smiled and waved, and stood up to shake my hand. We exchanged pleasantries and he introduced me to his date, a pretty blonde girl named Dilbert or something like that. I’m not good with names, sorry. As he took a few steps to sit back down, I saw that he was limping slightly, so I asked him what happened. When he responded, “Oh, I have rheumatoid arthritis.” I was so shocked that I immediately said, “You have R.A.?” He responded in the positive once again, and I waited for the recognition of our similar condition. After a pregnant pause that lasted way too long, I finally said, “I have rheumatoid arthritis as well.” He said, “Oh, yeah it sucks,” the same way he would have if I had just mentioned that I had found a Band-Aid in my salad. There was absolutely no surprise or interest in his voice to confirm the fact that he understood just how unlikely it was that we both suffered from the same autoimmune ailment. Even worse, there was absolutely no recognition at all that I had crusaded for years against the public’s ignorance of our shared plight. I considered waiting longer for my due, but I knew that he had absolutely no idea about my work.
I couldn’t believe it. Someone who I was friendly with had come down with the same autoimmune illness I had been fighting for years and publicizing for almost as long. It was an extremely unlikely outcome, and I was almost glad to hear that this person was now going to have to learn about the ailment and help to educate his relatives and friends. Of course, I wasn’t happy that he was in pain, but at least come good would come out of it. I pressed him for more information.
“So, when were you diagnosed?” I asked, eager to hear the story.
“Well,” he said, “I was in the army, and when I was stationed in Afghanistan so I got it from that.”
“Hmmm, methinks something is awry,” I said to myself. How could someone being stationed in a foreign country lead to contracting an autoimmune illness? I was curious, to say the least, so I pressed him a bit further.
“Oh, really,” I said, “how did you get the disease exactly?” I asked, slowly realizing I might know the answer.
“Well, we had to carry at least seventy pounds of gear for hours a day,” he responded, and I cringed, knowing now exactly what he was going to say, “so my knees and ankles are shot. The doctor said I have rheumatoid arthritis now in my lower joints.”
Boom. There it was, ignorance about arthritis personified, standing right in front of me. I put on a brave face, but I felt like someone had punched me in the gut. He had literally proved that all of my efforts have still left people in my local area’s social circle misinformed. I think we can all agree that the army doctor probably didn’t misdiagnose his osteoarthritis as rheumatoid arthritis, so that left only one possibility. This person believed that O.A. and R.A. were as interchangeable as Ketchup and Catsup. What a shame.
I smiled and nodded for the rest of the conversation, and I didn’t even bother to correct him because I knew it would only be forgotten the next day. Besides, I was too upset that such ignorance about arthritis still existed, and so close to home as well. It hurt, I won’t lie, and shook my faith in the efforts I make every day to dispel the myths about autoimmune illness. Allison and I ate our dinner in relative silence, and I went home, sad that we are bombarded with information about every disease in the world on TV, radio, posters, the Internet, and outside the grocery store, and yet people still don’t even know that rheumatoid arthritis and osteoarthritis are completely different ailments. I mean, I’m not expecting the public at large to know specific facts like rheumatoid arthritis caused by the immune system and osteoarthritis is caused by overuse, no, I am literally just expecting them to know that they are separate conditions. Is it too much to ask? Apparently it is.
It was extremely disheartening to see the misinformation live, right in front of me, and I was upset that night. The next day, though, I got up, and got right back up on the horse, writing this blog and working on my new book. The simple fact is that it is going to take a lot more work to get our message out there, folks, so we need to double down and keep up the great work we are doing. Setbacks will happen, but it is all the more reason we need to keep pressing forward.