Pandemic from a Chronic Viewpoint
“EVERYTHING WE DO BEFORE A PANDEMIC WILL SEEM ALARMIST. EVERYTHING WE DO AFTER WILL SEEM INADEQUATE” – Michael Leavitt
Written by: Amanda Henderson March 18, 2020
As of today (Wednesday, March 18, 2020) something unprecedented in our history has occurred: many countries have been asked by their governments to remain at home. We are all at war, right from our own living rooms. It's new, unfamiliar territory and we're all learning about it as we go, including how it spreads, which is a concept that is constantly updated as we learn more about it.
It's in our news stories, our social media feeds, and on our minds- this new reality that has leveled the playing field, globally. I am well-informed about the effects of the virus, and the percentages involved in this viral storm, since I'm familiar with medical research as a part of my own conditions. It can all seem daunting, yet I hold on to hope that most people in the U.S. will make it through this, virtually unscathed, physically. However, I'd like to share my personal viewpoint as a chronically ill member of society who lives with a rare and incurable disease.
I'd like to begin by stating I am not afraid of the coronavirus. I've learned its origin, how it spreads, and how we are all susceptible. I don't believe in allowing fear to control me, because this virus has a will of its own that I cannot change. I do believe in the importance of staying informed through reputable sources and being mindful of our civic duty to follow guidelines. They are in place not only for our own benefit, but for the benefit of all around us.
I will take this teachable moment to share what I've learned about this ordeal that does have me worried, on a personal level. I've been a part of the medical community as a chronically ill patient for the last 14 years. I have a unique experience, compared to the "normal" community of folks who visit doctors and hospitals for "regular" medical necessities i.e. annual exams, cold and flu checks, and having babies or knee replacements.. you get the idea. I know many of my doctors, nurses and pharmacists by name, as does a majority of the chronically ill folks I keep up with in international online groups. Because of this chronic lifestyle, as I read about the experiences of other countries, Italy, China, Switzerland to name a few, I can place myself in the heart of the battle. I visualize the familiar faces of the nurses who care for me at the hospital in Council Bluffs every week, not to mention my own medical staff family members who work on the front lines. I can imagine exactly how the hallways and rooms that I wander through will change drastically, how clinical staff will be exhausted and possibly become ill themselves as they are doing their utmost best to save our lives. They will have the crushing responsibility of choosing between savable patients and those who will be turned away. You see, the problem is not in the virus itself, nor the fact that it might not effect most people terribly. For us, the issue lies in the susceptibility we have in becoming markedly ill with our very own illnesses, and not being able to receive the care we will so desperately need because there is no room for us.
How many people are affected by chronic diseases? Generally incurable and ongoing, chronic diseases affect approximately 133 million Americans, representing more than 40% of the total population of this country- projected to grow to an estimated 157 million, with 81 million having multiple conditions. Not to mention, for normal folks out there, leading causes of death in the U.S. are heart disease and cancer. When hospitals are brimming with corona virus cases, how can people who require treatments or whose illness flares going to get the treatment they need to stay alive and well? I've already imagined life without weekly IV, and I am facing more physical issues than I care to list, with the very worst case scenario being a stroke. I live with genetically smaller veins in my brain (due to my chronic illnesses), which is most likely what prompted my first stroke. I was lucky to receive treatment in the ER in time, and though I continue to have short term memory and dysphagia issues, they are mild in comparison to not being able to speak at all, nor write, as I was that night. The possibility that I won't be able to keep up with my treatments, and that the ER will not have an area to treat a stroke is more disheartening to me than working through a virus, no matter the outcome. This is not a far-fetched idea- it is the current situation in Italy.
I urge every U.S. citizen not to mire in the fear and helplessness this situation can bring, for fear of the unknown is common. Instead, be aware of the impact our daily lives can have on others. Arm yourself with knowledge and common sense. Take part in 'flattening the curve'. We can get through this together, with less impact than other countries are facing, if we learn from them and our healthcare professionals immediately. In spite of the inevitable future, I believe my life is just as valuable as the next person's. Let's be proactive collectively, bearing that theory in mind. I have been encouraged by the groups of people coming together for the good of others and their families in this difficult time. Here are just a few simple guidelines to live by for the foreseeable future, as well as:
• HAVE SOME FAITH - in whatever spiritual guidance you seek, and in each other.
• WASH YOUR HANDS, often and well.
• DON'T TOUCH anything in the store and set it back down for someone else to pick up.
• STAY HOME (only you know how effectively you can maintain this guideline) OR PRACTICE SOCIAL DISTANCING. Be mindful of the people and establishments you come into contact with. If they become infected and you are asymptomatic, stay home!
• DON'T FLY- everything is closed anyway.
• DON'T SPREAD MISINFORMATION. If it seems highly unusual, it probably is. Please fact check before reposting! Spoiler alert: No BATS were eaten to kick start this pandemic.
Be well, know you are loved, and see you on the flip side.. -ah
