Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Immune Compromised In a COVID Focused World- What We Want You To Know
I’m not sure the world has ever been more aware of the existence of Rheumatoid Arthritis. Yet, still, that awareness for most is not understanding, far from. Some may know it is an autoimmune disease, or that one of the medications debated about for COVID-19 treatment is used by RA patients, or that it is a type of arthritis. Few have any idea of the scope of this disease. Of the many ways it impacts our lives and the choices it forces us to make. Of the danger we live with everyday of our lives.
Oddly enough, it was the spreading awareness of rheumatoid arthritis that made it clear to me how little people actually know about RA and other autoimmune diseases. Since everyone seems to suddenly be acutely aware that what they do not know might kill us, I thought it might be a great time to share some of the other things we need you to know, because as much as we appreciate the care you take to protect us from COVID-19, there are so many more dangers we need you to know we face. Many of which, come from you.
Rheumatoid arthritis is a systemic autoimmune disease, what this basically means is that our bodies attack themselves, in many different areas. Though the main symptom of RA is painful, swollen joints, joints are not the only part of the body RA destroys. A rheumatoid arthritis diagnosis means a 60% increase in the risk of heart attack, as the heart is one of the many other things RA attacks. Depression impacts an estimated 46% of patients, as symptoms lead to changes is what they can do and often loss of work. Within 20 years of diagnosis, 80% of patients are unable to work. 10% will be wheelchair or bedridden within 10-15 years of diagnosis. Risk of various types of cancer increase by between 5 and 45%, without medications. Cancer risks associated with some medications are even higher. Life expectancy is reduced by 10-15 years upon rheumatoid diagnosis. The point is, life with RA comes with a long list of dangers and some pretty heavy statistics, and those were just the things our bodies can do to us all on their own.
A distracted and oddly behaving immune system, suppressed by medications, also leaves us open to a variety of dangers from the outside world. In fact, 25% will die of an infection, perhaps from something as simple as a bad pedicure. Tuberculosis, fungal infections, flu, pneumonia, meningitis, all potentially deadly to someone with a suppressed immune system. Which explains why, when COVID-19 came our way, many of us were prepared to avoid it. What we were not prepared for, was the way everyone else reacted. After all, when you walk around in a world full of things that have a 45% chance of killing you, news that a new virus with a 2-7% death rate among the population doesn’t sound all that scary. It was like you told us there was another strain of flu going around, because, essentially, that’s the situation.
Now you ask us all to continue to hide out, apparently indefinitely, and many of us look at those numbers and say, why? Because, you see, we’ve used stats to soothe ourselves for years. That 45% chance we will get a deadly cancer? That’s also a 55% chance we won’t. A disease that kills 7% of the people it infects, leaves 93% alive. Stats like that, are what keep us moving forward and living our lives. It’s knowing that 90% of patients are NOT wheelchair bound that gets us up on our feet fighting to not be that 10% that have to sit for life. Despite the pain, the struggle, and the fact that it might not save us from the chair in the end, we do all we can to avoid it. Including taking medications that just might kill us. Most of which, in fact, have a much higher chance of killing us than COVID-19.
So, while the world seems to have just realized we are vulnerable, we need you to understand, we have always been vulnerable. That cold you went to work with? It could have turned to pneumonia and killed your immune compromised co-worker. That staff infection you’re being treated for, it could kill the friend you shared your hand lotion with, because her immune system can’t fight like yours can. An eye infection could cost us our sight. An infected toe may lead to amputation or death. For the immune compromised, these are all real dangers.
In a world full of deadly germs, medications, and diseases that can kill us, in a body that is often hell bent on doing it’s own part to take us down, one more germ just isn’t that big of a deal to many of us. We can’t give it our fear, there isn’t any left to give, it’s been eaten up by our reality. Besides, stress triggers our bodies to increase the assault, so stress and fear are killers we avoid like the plague. At the end of the day, we can’t live in fear of COVID because that fear might cause the attack on our heart to begin. All we can do is add it to our list of things to be vigilant for along with the flu, tuberculosis, and that bad pedicure. Since the world is full of dangers, and fear is one of them, we tuck the fear aside and keep moving.
Hopefully the rest of you can figure out how to do the same. Hopefully you can carry this lesson with you into the world and make it safer for us every day, not just when there is a pandemic on the news. We hope you learn to stay home when you are sick, to keep your distance and respect people’s personal space, to wash your hands, to sanitize the things people touch frequently, to have a healthy respect for deadly germs. We hope you stop showing up to gatherings with a kid who clearly has the flu. We hope you remember that what doesn’t kill you might in fact be deadly to others and learn to be careful about spreading your germs. We hope employers learn to allow people to take the time needed to no longer be contagious before returning to work. We hope you are all learning that keeping people safe and alive trumps every other “need” society has. You don’t need to take that flu to work, to the basketball game, to the concert, to the grocery store. You can stay home and rest when you are sick, and the world will not come to an end. If you learn nothing else from this pandemic, we hope you learn that.
Tenacious ME 