As I write this piece, Russia is reportedly bombing the rebels in Syria – our allies, the rebels the U.S.A. is backing in the country’s four-way civil war. Meanwhile, Russia’s capricious leader, Vladmir Putin, is saying it ain’t so, claiming they are bombing ISIL (ISIS) in a way reminiscent of Nikita Khrushchev insisting the Soviet Union was not trying to install nuclear missiles in Cuba. Indeed, it seems we may be entering another Cold War with Russia, that tense powder keg standoff situation where the slightest wrong move can spark a nuclear conflagration. I have been obsessed with hungrily consuming each and every news report this week on Russia bombing Syria– so much so that I realized that I was taking this personally. Yes, personally. And I finally figured out why: Living with chronic illness, I’ve been fighting my own Cold War for 30 years.
That’s right, those of us living with chronic illness live our own Cold War, trying to contain and not wake the diseases that are sleeping giants that can instantly turn our bodies into a raging hellfire of conflict and pain.
It was when I was lying in bed that I thought of the comparison. I had gone to sleep the night before feeling tired after spending the entire day running cable wires and hanging a television, successfully I might add, and I was proud of what I had accomplished. Somewhere, in the back of my mind, I knew that I might pay a terrible price for expounding so much physical effort, but I figured it would be a slight soreness, at most. It was only the next morning, when I woke up with my hips on fire, that I realized I might have overdone it and angered my own personal Russia, Rheumatoid Arthritis, and its leader, Shed-a-tear Hurtin’.
The thing is, just as in real life, there’s no way to tell exactly what is going to result in a flare-up, and the amount of work you do or physical effort you expound in no way corresponds to the amount of pain you may or may not feel. Just like in the real world, there’s no telling what spark will ignite a Cold War, or worse. I’m sure that when assassins killed Archduke Franz Ferdinand in 1914, they had no idea it would eventually lead to World War I. Just the same, when I fell outside of a physical therapy appointment years ago, I had no idea that a chain reaction would ensue that would just about destroy my body for good. It’s this uncertainty that makes the Autoimmune Cold War so much more mentally taxing, and I’m sure the same holds true for those in our government who fight each and every day to stop a new Cold War from developing.
I have said to myself many times throughout my thirty years with disease that I’d much rather deal with pain and suffering on a regular basis than live life on a razor’s edge, not knowing what will result in a deep cut. It seems like I’m not the only one, either. There is a study from 2008 that discovered most people would rather hear clear negative news than deal with uncertainty or ambiguity. Doubt and inconsistency are two of the most prolific stress triggers in human beings, and chronic illness is a virtual factory of questions and reservation. Something as simple as banging your elbow could result in a full-blown flare-up, with swelling and discomfort, or it could result in nothing more than the soreness a healthy person would feel. The state of Cold War that exists between patient and autoimmune disease is a tightrope walk that sometimes kills the acrobat.
Unfortunately, the bad news doesn’t end there. Just like in real life, there are times when things can begin to snowball, getting out of control faster than we can mitigate the symptoms. Usually, this happens when a positive feedback loop forms. What does this entail, you ask? Well, picture a person with rheumatoid arthritis who has a fall. It’s not a serious accident, but this person injures their knee enough that it begins to swell. This person does all they can to limit the possibility of the worst outcome – using ice, extra medicine, and getting plenty of rest, but they know that there is still a very real chance of this knew injury causing a full-blown RA flare-up. Believe it or not, this knowledge itself actually adds to the chance that the outcome will sway towards the unwanted, because not knowing what will happen results in that most damaging of mental states – stress.
Stress has also long been known to affect an individual’s physical health. It can reduce the effectiveness of the immune system, it can manifest as injuries in some cases, and, most important, stress exacerbates any chronic illness. So, now not only does this individual have an injured knee, but the stress of not knowing if they will have to deal with a flare-up in the next few days actually adds to the chance that they will have to deal with a flare-up in the next few days. Thus you have your positive feedback loop, and in the same way that real world actions have unintended consequences that turn a Cold War into a full-blown-conflict, a simple event can be the first domino in a serious of events that results, in some cases like mine, a trip to the surgical bay.
So how do those of us with chronic illness live with this crippling uncertainty day in and day out? We don’t sweat the small stuff, for starters. When you have to worry about things like walking the next day, McDonald’s running out of Shamrock Shakes doesn’t seem too important (it’s just vanilla and green anyway). To be honest, it has always amazed me that most people I meet who suffer from autoimmune illness are incurable optimists. Maybe it’s because we learn early on how to deal with disappointment and tragedy, or maybe it’s simply because we have to be optimists or we’d never get out of bed – or maybe even both. Whatever the reason, it’s been proven that an upbeat attitude can positively affect the physical body, and me and others like me are living proof. Even with everything I deal with, there are others so much worse off than I am, and I’ve never heard them complain – not once. I hear normies complain all the time – “they lost my dry cleaning,” “they put whip cream on my Frappuccino,” “Pinkberry is closed!” – it never ends. Just for a minute, imagine if those people had to face a hardship and fight my Cold War for just a week or two. Maybe then the real Cold War would never have happened.